The Story of My Cancer Journey
January 2008
I found the perfect pocket calendar minus one thing; had to fill out all the dates. Then I remembered I had a sake & sushi date with Janet and figured I could fill in all the days while we visited. So there I was chopstix in one hand and a pen in the other mindlessly filling out the calendar. I was turning the page to June when this feeling swept over me. I sensed God was telling me to stop. I put down the pen thinking it was just a funny feeling and I would resume after my next bite of sushi. I picked up my pen and once again "STOP" came to mind. Well... if God doesn't want me to finish I better not! I tucked the calendar away in my purse. I called Janet later laughing about it but somewhat curious at the same time. She said sometimes we just get weirded out for no particular reason and not to worry. She reminded me of this incident in June when I learned of the journey I was about to take.
April 2008
Went with my mammogram mate, Janet, for our annual screening, and this time I noticed a change in the demeanor of the technician after she checked to make sure she got all the images. I was soon called back for a biopsy.
Later that April—boob's squashed like pancakes, even more so then the mammogram if that's possible, they began the biopsy. They decided 5 stabs otta do it. All computerized and precisely done, in went the knife for the first one... ouch...that sucks! Then the second and third. As they went in for the forth a stream of blood shot up, they hit an artery. The tech checked out what he had and decided there was enough tissue to get the info needed, so the other two samples weren't taken. They all tested positive for cancer. It looked non-aggressive and a simple lumpectomy and a little radiation should do the job. Or will it?
I soon had appointments with an oncologist, radiologist, and a surgeon to go over all the details. I was happy to have Naomi there with me as support and a second set of ears to collect all the overwhelming information given.
May 2008
Went to Bremerton for an MRI. There was a table I had to lie on with two holes for each ta-ta! “One size fits all”, said the (male) technician. I aimed for the holes. As I laid there I suddenly felt like my breasts were transformed into udders in a machine and ready for the milking. I was thinking everyone could see them awkwardly hanging through the holes and felt a bit embarrassed. What a sight for the technician and Janet, so to make lite of it all I just started to Moooo! They let Janet sit in the MRI room the whole time and I watched her through angled mirrors as she signaled how much time was left during each part of the process.
The nice Filipino tech showed us immediately after the MRI where the cancer was and what it looked like. We all agreed that it looked like an easy removal.
May 2008
Ann, a school district psychologist and breast cancer survivor, saw me walk by her office on the way to my classroom, she popped her head out and invited me in to shared her story of the wonderful experience she had with the Seattle Cancer Care Alliance (SCCA). She encouraged me strongly to get my cancer treatment in Seattle or at least go there for a second opinion. So I did.
Soon I had an appointment to meet with an oncologist, a surgeon, and a radiologist at SCCA to discuss their take on my cancer treatment. They were very happy that it was caught early and positive that it would be an easy removal with only relatively minor surgery and radiation. Chemo was not included as part of the therapy at that time because the biopsy report came back non aggressive and as far as they could see I didn't need it. Once again Naomi was there for support. On the way home we talked about how God was in control and I needed to trust His lead.
June 2008
First surgery. Removal of the lump was successful. After further examination of it they found what would of been found back in April during the biopsy, had they been able to retrieve all the tissue they wanted to. The cancer was aggressive.
On getting the results, Dr. Anderson, the surgeon, called me on his way to a conference in Brazil and told me there was a possibility that the cancer had spread to the lymph nodes. He assured me that the possibility was slight but he needed to be sure.
Later in June 2008
Second surgery, I had to have the tumor area tagged so I traveled from one hospital to another with a wire and slip hanging from my flesh like USDA approved beef. I then go in and have radioactive dye injected to make me glow a pathway between the sentinel nodes and the tumor area, then the doc knows exactly which nodes to remove, One of the advantages of doing my surgeries in Seattle is they are able to examine the removed tissue to see if it is malignant while I am still on the table and under anesthesia, then they can go in and remove what they need to without doing a second surgery. If the nodes test positive they would remove a layer of tissue around them for extra measure, but it would also mean chemotherapy was a definite. I then became very aware of my vanity. I know the chemo would suck but I was really more concerned about how funny I would look bald. God says "a woman's hair is her crowning glory". John was first attracted to me because he liked my long chocolate brown hair that flowed down to my hips and that meant a lot to me.
Dr. Anderson found three out of five lymph nodes were malignant and fifteen more were removed which were all fine. While I was in recovery, he went out and told Janet what was going on. She then called John and my mom who could spread the word to everyone else.
They finally let Janet back to the recovery room. She stood bedside me with eyes concerned but a smile on her face she reached out to hold my hand and tell me the news, before she could I mouthed the word “chemo” to her with tears in my eyes knowing that meant my fears would come to past. Poison, sickness and worse of all baldness. Little did I know that would be the least of what was in store for me.
Mariah was so helpful to me as I recovered, measuring the fluids and marking them down and bringing me breakfast in bed. She never left the house until she knew I had everything I needed. Thank you sweetheart.
July 2008
After finding out that I was going to need chemo, Janet reminded me of the perfect pocket calendar I tried to fill out between sake and sushi back in January. This became a source of comfort for me through the whole ordeal because I now knew without a doubt that back in January I didn't need to worry about my future plans because God was letting me know that He was already going before me to lay out the path He knew I needed to be on to ensure my healing, well being and strengthen my relationship with the one who knit me in my mothers womb. Jeremiah 29:11 I know the plans I have for you declares the Lord, plans to prosper you and not to harm you plans to give you hope and a future.
I would have a month of healing before I started chemotherapy.
September 2008
The SCCA docs wrote up the chemo protocol for me and sent it to the Sequim Cancer Center which was 20 minutes away from my home. I hoped to do my treatments locally instead of going to Seattle every week. At this point, I was introduced to Dr. Kummit, oncologist and wonderful man and the friendly staff of nurses. I went every Thursday from 2:30 to 5:30pm.
My chemo lasted for six long months. I worked at the Port Angeles School District in the scholastic and life skills class with medically fragile middle-school students. I felt I needed to make a goal so I could get up every morning face the day and make it through to the next, so I decided not to miss a single day of work that year, and I didn’t. In fact, I was the only person in our working group not to miss a day! I’d get up, throw up if I had to, take a shower, dress and get to work. I'd pour myself into loving on those sweet kids and that would get my mind off of my yuck. I would stop at the store on the way home to get something for dinner, cook it and collapse for the rest of the evening. John took care of everything else.
My Hero!!!
I’d go through the whole week until Thursday, then I'd leave straight from work, drive to Sequim, get infused in the Sequim Cancer Center for 3 ½ to 4 hours. I remember the first infusion. Nurse Kasey came in and asks me my name and birth date to make sure the chemo cocktail is mine. Earlier that month I had a power port surgically inserted upper left chest. Kasey accesses it and draws enough blood to run a series of tests to make sure I am okay to receive chemo. Everything looks good and in she comes in with a bag of chemo. She hooks it up to a machine that will calculate exact timing of the infusion, then she hooks it up to my port and turns it on. I watch the chemo move slowly through the tube closer and closer to my vein and it occurs to me what it is—a form of mustard gas poison that’s designed to destroy my body. It’s a good thing Naomi was there to help me with the mix of emotions I had—fear, happiness, realizing the necessity yet being horrified about what was about to enter into my veins. I held my breath, as if that was going to help.
After that first unsettling time, I got used to the idea. Friends would often come with me or I brought knitting to work on. We had a great time laughing and joking. We often laughed about what the other chemo patients must be thinking with all the laughter in our part of the facility. The entire staff was amazing.
Saturday morning taking a shower when I notice I am ankle deep in water, I turn to look at the drain and saw that it is clogged with handfuls of my hair. I cried through the rest of my shower. Called my mom, still crying, she calmly said to me, "that's okay honey it's doing what its suppose to do, now we know the chemo is working".
Well my wig hadn't arrived and I promised the kids they could shave my head when it started falling out. Sierra brought over her electric razor and Rylan, Zoe and Sierra began carving out a Mohawk on my head. Mariah didn't do as well seeing the first tangible evidence of her mommy having cancer and went to her bedroom unsure of what to do with all the emotions. Sierra took lotsa fun pictures and when it came time to cut the liberty spikes off Mariah came out and snipped off a few. Monday morning and no wig. I am not a hat person and now I had to go out in public bald with a hat I was horrified. By the end of the week my wig arrived. But now, as I tried it on, I felt God impress on me how much more usable in sharing my story I could be if I were obviously bald. And boy was He right, I had people coming up to me all the time asking questions or concerned about a loved one and would ask me how they could help them. Some even scared about loosing their own hair. A whole new opportunity to share that would of been missed just by putting on a wig.
I am very grateful to the people who offered to spend that time with me, to sit and visit and get my mind off what was going on and all the prayer warriors and dinner deliverers, Sierra, Mariah, Naomi, Janet, Karol, Grandpa Mike, Sharon, Melanie, Robert, Ruth, Dawn, Karen, Mary, Ed, Marsha, My Church family at Hillcrest, Mom, Bob, Lia, Michelle, dad, Jenny, cousins, aunties, uncles. So many more, I don't like naming names because with my chemo brain I will forget someone, without you I could not of made it though as well as I did. I’m grateful to my husband John for being such a support, working so hard and holding down the home front while I went through this first part of my cancer journey.
April 2009
Chemo stopped and radiation started 6 weeks Monday through Friday. Sunburn wasn't so bad, I had good skin type. I used lots of aloe vera 3 or more times a day. It makes you feel tired but tolerable. I just drove to Sequim everyday after work. It only took 30 min from the time I walked in to the time I left.
May 2009
I was finally done with all this (or so I thought)!
June 2009
All seemed fine, I felt better than ever that fall as Hillary and I had started the Candida diet and what I thought was my new normal post chemo wasn't. All the little physical annoyances I thought I had to live with due to the affects of chemo were gone and I was doing really well. I was off all my medications except for tamoxifin. I even started to loose the weight that had held on to me from the toxins that invaded my body to save my life. I told Dr. Kummet that I was looking forward to at least loosing weight through the process but I ended up gaining. He said God forbid that you will ever have to go through this again Camille, but if you do I won't give you the anti nausea meds and you can loose all the weight you want. He's a funny guy. I doubt I will take him up on that.
Summer 2010
I started checking in to the variety of breast reconstructions offered. The simplest was a tissue transplant from the tummy to the breast. Since it was just a small indent it would be an easy surgery.
December 2010
The Doctor felt confident this surgery was the best option for me. He said the only concern was that my breast had been radiated which makes the skin less stretchy and could cause severe wrinkling and or bad stretch marks. So #1 mammogram to double check it was clear of cancer then a little liposuction off my stomach to fill in the breast. Don’t we all wish we could do that?
March 2011
The breast started wrinkling so I went in for the doctors to take a look. They did #2 mammogram and all was clear so they said I probably had to have another surgery. There was a lump in the breast but they figured it was due to the tissue transplant so no worries. I asked if I could do the surgery in the summer since I have summers off working for the school district. They felt that would be fine.
May/June 2011
The breast continued wrinkling, and I was looking forward to getting in for surgery. In June I had #3 mammogram which came back clear of cancer. I then met with the plastic surgeon and upon looking at the breast he said he was concerned and wanted to have an MRI done before he did anything. The weird thing was I never felt there was anything wrong I knew I didn't have cancer all the other tests had come back clear and I was confident the MRI would too. But that wasn't what happened, The test came back and so did the cancer, and this time with a vengeance and it was in both breast. Sigh....
When I got the call I was at home planning my summer trip to California. I asked the doctor if I needed to cancel and he said there was a bit of pre-surgery planning to do and I should go on my trip and relax, but be ready for an aggressive double mastectomy when I got back.
July 2011
Before they let me leave on my road trip to California they decided to run me through a series of tests. PET scan, CT scan and Brain scan. They all came back clear so I packed my little RV and hit the road with Sierra, Zoe, Mariah and Kody.
We were all having a fun and eventful time at mom's as usual. Sierra was painting a beautiful tropical mural on the wall in mom & Bob's bedroom, Mariah and Kody spent a lot of time at the beach surfing, mom and I spent most of our time cuddling, swimming and playing with Zoe. Mom said she wanted to treat me to a facial with her friend Gigi. While there she shared with me her mom's experience with breast cancer and talk to me about a friend of hers who sold these mushrooms that helped shrink tumors. I was interested but knowing it didn't pertain to me, as I was scheduled for a double mastectomy, I just politely listened. She was sure I needed to have some of these mushrooms and insisted I start taking them. Okay, I have heard of the medicinal uses of mushrooms so it could only help. Besides a bottle of mushroom capsules and a box of mushroom tea won't cut into my vacation savings much... $30 to $35 tops. Later that week I got a call that my mushrooms were in. I grabbed a 50 and drove to the spa. When the lady gave me the invoice it read $88. yikes... I had to leave and get more money. When I returned Carol explained all the benefits of the mushrooms. I only half way listened as I was still in shock at paying $88 for mushrooms. As we talked Gigi came out from doing a facial for a lady named Courtney, when she looked over and saw me she grabbed Courtney's hand and quickly came over to me and said "Camille, it is no accident that you are here, this is a divine appointment". She asked Courtney to sit with me a while and tell me her mothers breast cancer story. As she talked to me she wrote down notes for me of all the therapies she had researched and the doctors she had interviewed. She spoke mostly of tumor shrinkage and knowing it didn't pertain to me due to my upcoming mastectomy, I found my self still dwelling on spending all that money on mushrooms, little did I know, this was a divine appointment and God would bring me back to this day and use it to bring me hope.
August 2011
Had a powwow with the oncology doctors in Seattle at the SCCA, plus assorted radiologists and interns. So thankful to have John, Naomi and Janet there. As I went into the examination room I watched each doctors faces as they came over to take a look one by one. They were way too serious and the surgeon even gave me the boo-boo lip. We went into the conference room and waited. The oncologist and radiologist came in with grim looks on their faces. She told me she would start me on a chemo that was physically tolerable so I could continue my daily activities, but she didn't expect it to work. The surgeon came in next and told me the tumor was inoperable. Great. Thanks, Doctor. We left in a cloud and I thought back to the trip and how I was so sad that I would be getting a double mastectomy and now here I was driving home just wishing that I could get it done.
The first most horrible night of my life. How could this happen I was healthy and feeling better then ever. It was breast cancer, people hardly die of breast cancer these days. This can't be happening! I have Ross, Rylan and Mariah to watch walk down the isle and more grandchildren to meet. I have Zoe to cuddle and need to be there for Sierra & Joe. I have a husband whom I promised to grow old with. Please God make this all just a bad dream and wake me up!
I had the whole weekend to go through before I could call another doctor to tell me they were mistaken. Monday arrived and I was on the phone calling Dr. Kummet, he got me in as soon as possible. Melanie and Janet went with me and we met with Dr. Kummet and another retired doc that fills in on occasion, he was on the board of directors at the SCCA, they said they couldn't give me a different diagnosis but I was healthy and young and they felt I could handle a stronger chemo, they came up with a good mixture and started me on it as soon as they put in a new port. I was happy they were bringing the big guns out to help me battle.
I remembered the mushrooms I tucked away in my suitcase along with the notes Courtney wrote out for me, I found them and swallowed a couple caps and made myself a cup of mushroom tea. After steeping I took the tea bag out of the hot water and placed it on my breast hoping it would absorb into the tumor and help shrink it. Desperation was sinking in and that $88. seemed like pennies now. I called mom and told her to call Gigi and get Courtney's number. I got a call that night from her and she went over all the notes of information she gave me. This time I listened very closely because I knew once again God had gone before me and was laying out the path I needed to be on. She told me about the Cancer Treatment Centers of America so I decided to start there. Turns out that fateful day in the summer was a divine appointment!
Karen, a friend in Oklahoma, called to encourage me. Before she hung up she said one thing she wanted me to remember, be still and know that He is God. That night as I lay awake I started praying. Okay, how do I be still and know? Is this what I am doing now? I'm still and I know.... Is it laying here praying? Or is it just laying here? Soon I have a sense of someone speaking to my heart and saying, "shut up" so I lay there quietly....then... "And know that I am God". Okay, how do I know that You are God? Well, You set the stars in the sky and You know them by name.... You cause the sun to rise and fall... You have every hair on my head counted... Wait, that means you know every cell in my body too, because you knit me in my mothers womb. Psalm 139 tells me that, I know because it was the first Psalm I ever memorized. I'll recite it now.... I laid there thinking it over until I came to a verse that says, "All the days ordained for me were written in Your book, before one of them ever came to be. Wait a minute... That means the doctors can't put me on palliative care, my days are ordained by You and no one can change that day but You. So the only days I need to worry about are all the ones in between, right? Right!
In my Sunday school at church we take turns presenting the lesson and it was my turn. The study was about healing (weird) A group of friends had carried their paraplegic friend to be healed by Jesus but when they arrived there was a crowed. So they carried him up to the roof top, made a hole and lower him down. Jesus, seeing how faithful the mans friends were said to him, "Because of their faith you will be healed". Hmmm...I think I remember other places where Jesus said this, so I started looking them up there were many stories and I read them all. Jesus healing the sick and raising the dead because of the faith of their family and friends. Well what does this mean to me Lord? That night as I once again lay awake trying to be still and know, it came to me. All the days of their lives had been ordained too but because of the faith of their friends and family God altered their day. Wow... this made a world of difference to me, I had so many people praying for me, all over the world even, and they were all expecting a miracle! Their prayers became the most important thing to my life, for now I knew because of their faith, I would be healed.
September 2011
After a week of highs and lows, I started seeking alternative therapies.
I was involved with a Bible study at Naomi's house, we were reading through the Bible in a year together and upon hearing of my diagnosis John and Janna offered alkaline water from their Kangen water filtering system. Many benefits for cancer patients. Staying hydrated with it, Hillary and I were looking up alternative therapies and cancer treatment centers whenever we had the chance. We learned more about breast cancer then we ever wanted to. I came to the conclusion that my treatment needed to be a mixture to Western and Eastern medicine.
Cancer Treatment Centers of America (CTCA) offers alternative therapies together with Western traditional ones like chemo. After calling I found I would need to travel cross country for treatment, I was willing but my insurance was not. I had other insurance options and started looking into them. I was surprised to see a road block so quickly as I really felt that was where God was leading me. Was I mistaken, maybe I was suppose to piece together what they had to offer so I could stay local. I went to John and Janna's to get water and we talked about my dilemma. John said will lets pray, when we were done he said you know this verse keeps coming to mind, Proverbs 17:24 'a discerning person keeps wisdom in view, but a fool's eyes wander to the ends of the earth' not sure what it means for you though. Janna grabbed another translation, she plopped the book down and opened it, "oh look I opened it up right to the verse" she read it and it was the same, so she got another translation, and once again opened it up to the exact page the verse was on, but no new insight. Well one more translation and (weird) one more time at opening it up to the exact page. Okay this is when it stops being a coincidence. I still didn't know how it pertains to me but I knew I better write it down and tuck it into my purse. John gave me the name of a friend of his who is a Naturalistic doctor here in town, I called him the next day, very nice guy and very willing to help in any way and he gave me the name and number of a friend of his in Renton, Dr Gignac, who is a Naturalistic Oncologist and wanted me to see him so he could confer with him about my treatment. I called and made an appointment, he was so booked up that they couldn't get me in till end of October. They said they would call me back to let me know of my insurance coverage. Not sure what happen in between then and later, but I received a call 2 hours later and they said it was CTCA calling with info on my insurance. Wait..CTCA... are we back there again? Am I going cross country now? They said I was covered and the doctor rearranged his schedule and wanted to see me the next day. What doctor and where was I going? Dr. Gignac in Renton. But I thought this was the CTCA? Yes it is.... Dr. Gignac works for the CTCA. I knew God said I was going there but when I called they said I would be going to Chicago or Oklahoma. I told the receptionist and she said the other facilities were larger and they usually send patients to them because they have more to offer. Well all I knew was God had answered my prayers and I was going to the Cancer Treatment Centers of America. Yippee!!! I reached into my purse to get my keys out and drive home and a slip of paper was caught on them I opened it up to see what it read. Proverbs 17:24... Oh now I get it.
Naomi and Janet went over with me for my appointment and I will never forget what Dr. Gignac said to us, "I'm not going to let this cancer intimidate me!" I had been waiting for sooo long to hear someone say that!! I knew I was at the right place. We went to dinner afterwards and then had a great drive home, much different then the last trip home from Seattle. I asked Janet and Naomi over and over again to tell me what he said about the cancer and over and over again one of them would say "I'm not going to let this cancer intimidate me! I just couldn't get enough of hearing that! The following week Naomi and I drove to Renton again to met Dr. Chin the oncologist and he was as positive as his colleague. But still I started thinking of the expenses and wondered if I could do it. Naomi spoke up and said If you don't just make the choice to do this what has all your praying and trusting God been about? Make the commitment and let God take care of the rest. Okay.... here it goes.... Make the appointment. Dr. Chen wanted to run a few tests that day so we did that and smiled all the way home.
With the encouragement of Naomi and Janet and an army of friends who were willing to drive me to Renton once a week, I started my vitamin C infusions along with chemotherapy and an assortment other alternative therapies. Janet made phone calls and brought a calendar to church and everyone happily filled it in through the month of January. I have the best friends ever! Thank you my faithful Chemo drivers.
October 2011
I just got my hair to the point that I could put it up in a pony tail and now it was time again to shave it. Of course I will be sporting another Mohawk, Sierra brings over her razor once again, Zoe and Janet are there to help. When I first was diagnosed I was given a book called Chemo Kitty it was written to help young children understand the affects of chemo on their loved one. I read the book to Zoe and had no idea how much it would make an impression on her until this moment. Sierra begins shaving and Zoe becomes very concerned. What are you doing to Lala's hair mommy. Well its starting to fall out because of the chemo so we are just shaving it off so it doesn't make a mess everywhere.... You mean like Chemo kitty? Yes, just like Chemo Kitty. Grandpa comes out when we are almost half done and Zoe informs him that their cutting off my hair just like Chemo Kitty's so he doesn't have to worry.
Later that day Zoe comes over to me and takes my face in her sweet little hands and gives me a kiss and says don't worry Lala after your better all your hair will grow back just like Chemo Kitty's hair did.
I went to work at the middle school the next day with a big Mohawk and made a lot of people smile.
Dr Chen said it was time to get an MRI to see how the chemo was doing. We found out the cancer was still growing. That meant I had to change chemos. They started me up right away and sent my previous biopsies in for a chemo sensitivity test. It also charged me up to finding the next alternative therapy. Hillary, Janet and I read and read and we realized the only choice for me at this point was Brachy therapy (a radiation treatment) together with hyperthermia treatment (more or less microwaving the tumor tissue right after a Brachy treatment). We called all around and there are some that do the Brachy in Washington but none that did Hyperthermia. I brought information to CTCA for the docs there to tell me all they knew about it. They looked into the CTCA in Chicago and they did Brachy and wanted to send me there. But they didn't offer hyperthermia. The founder of both those therapies were in L.A. county I learned about them from Courtney when I was visiting mom that summer. They were 2 of the many treatments she told me about during my "divine appointment" at Gigi's. It was nice to see God going before me again. I never would of known of these treatments to even look up and study If I hadn't gone for that facial. Another source of comfort from God. Thanks for the leads.
Reality hits again and I start worrying about leaving my family and finances. How am I going to make this work? Hillary and I would have many talks about it until she finally just tells me that I have two choices, go to California or stay here and die! No... She really didn't say it like that she was a lot nicer and rational about talking me into it. I just like to say it that way because she is super sweet and loves me bunches and when she hears me say that she freaks and say "I didn't say that!!" But we both knew it was true.
Quick phone call to mommy then that Friday I hopped on a plane to my old hometown of Huntington Beach, California. Treatments were 20mins away at the Long Beach Memorial Hosp.
November-December 2011
Monday morning and ready for my appointment. Mom and I would meet Auntie Nani and Courtney there and start my first appointment with Dr. Syed. In walks this dear sweet man, bald with a big smile and an India accent, he looks just like my grandpa Benny. How cool is that for God to give me my grandpa-like doc to spear head this whole ordeal. Quick examination then a meeting in the conference room. My auntie Nani is a nurse and headed many department conferences in a variety of hospitals including the Tumor Board Meetings and right away she starts talking to Dr. S about getting my case ready for the tumor board meeting on Wednesday. She said she would do whatever she could to help. He was reluctant as it takes time to put the presentation together but with a little more persuasion from my auntie and he said he would get my case together and ready to present. I would of had to wait till next months meeting if she wouldn't of been there. She had a couple more pep talks with him out of the room. Between her and Courtney doing her doctor interview making sure all basis were covered concerning me, I was beginning to feel a little sorry for him, but thankful they were watching out for me. He told me he would do both therapies but seeing how aggressive the tumor was he could only give me a 40% to 50% chance that it would work. Well that was better then, I'm gonna do this but I don't expect it to work...right? Uncle Burt was waiting out front for us and as we walked to the car he put his arm around me and said everything is going to be okay sweetie you are a strong Filipino woman and you will beat this! I didn't feel very strong at that moment, walking under his big strong arm I just felt like little Camille again and I wanted him to kiss the owey and make it disappear. I cried like a baby all the way to the car and he cuddled me under his comforting arm and encouraged me the entire way. Surgery was scheduled for the following Tuesday. Mom wakes up early and makes sure I'm ready and off we go. They insert 21 tubes, 1 foot long and the same size around as a cocktail straw. 8 tubes through the tumor area up against the wall, 7 tubes right through the middle of the tumor and 6 tubes in the upper part of the tumor. Then they wheel me in to get a scan of the precise surrounding area of each tube and calculate how much radiation will be needed in each one. Amazing Right. Every morning after that for 12 treatments went like this. In the evening mom and I looked through cookbooks for a yummy dinner to cook the next day. Get up the next morning to be ready for a 9:00am appt. then Kanita the radiologists hooks me up to the Brachey radiation machine and steps out of the room. They watch me through the cameras set up in the room and do everything they need to do for me from the computer room. Aprox 30mins in there. Then they bring me into the Hyperthermia room. I get all set up in there and they microwave me for one hour. This opens all my blood vessels to receive the chemo and radiation and pump it into the tumor. Mom brings along her people magazine and reads it to me as I lay still, and I say that because every time I move mom says "be still honey". We leave the hospital go have lunch then to the grocery store to get the things for dinner then home to put them away. We get Lani & Leah (mom and dads little Maltese puppies) to take them for a walk. Dr. S said not to sit around because he wanted me to keep my blood circulation strongl. I didn't want to move around so much but mom made sure I did, keeping me busy knowing it was important (see mom, I knew what you were doing). Friends Friday... Mom's friends and prayer warriors meet us at the house to play Mexican Train, drink wine and eat chocolates, I sadly had to skip the wine part. These fabulous ladies became a sweet source of strength for me while I was there. I love you Diana, Kathy, Debbie, Judy, Marilyn and Mom. I was doing pretty well for the first half of the treatments and I mention to mom after seeing some of the patients sitting in the far corner just barely out of their jammies, I think they would feel better if they got up and showered and put fresh clean clothes on, I know it helps me. Famous last words.... towards the end of my treatments, exhausted, rt tumor burnt and covered with ulcers and the surrounding skin had the worse sunburn ever. Mom would wake me up... Wanna get up and take a shower sweetie... No.... I'd lay there till the last minute, step into some comfy baggy sweat pants throw on one of dads over sized sweat shirts and then on the way out,
step into my slippers. As I walked across the street to the hospital I looked down at myself... Mom, why did you let me leave the house like this...We both got a chuckle out of it, then sat in the far corner of the room with the rest of the lazy dresser. During this time I was also seeing Dr. Deo for my chemo treatments once a week and at our first appointment I asked him if he could get me Vitamin C infusions, he said he had not done them before but was willing to check it out for me. He finds convincing information on it and puts nurse Ann on the job of finding some. After much unsuccessful searching I gave Dr. Gignac a call back in Renton to get his help. He said the main lab was two towns away from me in Santa Ana and gave me all the info. Ann had it ready for me by my next infusion. In the chemo infusion room. Large rectangular room with a nurses station to the right, turn to the left and see comfy recliners all around the room against the wall, next to each one is a stand that holds the bags of your variety of chemo cocktails, in the middle of the room is a table where you can do puzzles or paperwork far side of the room is the bathroom and pharmacy, hung on the wall next to the nurses station is a big screen T.V. I Love Lucy was on that day and as they brought out my vitamin C the other two patients on either side of me were amazed. My what a big infusion bag you have... The better to kill cancer with my dear...What are they giving you, one asks, I tell them all I know about it, give them a few websites to look at, and answer any questions I could. Later, after returning to Washington, I called the office with a couple questions, Ann got on the phone and called me a trouble maker. She said they are having more and more people asking about vitamin C infusions and wanting them. And after Dr. Deo read more information and testimonies on it he couldn't say no with a clear conscience.
Hee Hee Hee my plan to get vitamin C infusions in every cancer treatment center one by one is working.
Timing was important at this point, the left tumor was growing so they kept me on chemo to slow it down while they worked on the right tumor. The plan was to finish brachy and go into surgery to remove the left tumor and take the brachy tubes out. But by the time I finished I was worn out and my blood cells were down. So no surgery, but the tubes were still coming out. Mom had a dentist appt so dad took me in. Dr. S warned me that this was going to be uncomfortable... yeah 21 times. He said he would pull out more then one at a time. One of the most wonderful nurses in the world, Jessie was there, I could write a whole chapter of all the ways she helped me, and all the strings she pulled to make everything work together as smooth as possible and all the kind words she spoke to me. She held my hand and told me to take a breath...Big yank..Ouch!!! He showed me 2 tubes. Okay only 10 more yanks to go. Another deep breath and yank.. That one hurt even worse... Then another and another each one more painful then the last. Ouch...Wait... I need to take a break... Okay, but I'm all done he says. What?!? How did that happen? Well, people always freak out if I tell them I'm going to pull them out by the hand fulls so I show them the first 2 and their usually good with that. Tricky grandpa looking doctor.
The next day was Thanksgiving and I was happy not to have a bunch of tubes hanging out of me as I enjoyed a relaxing and delicious dinner with friends and family. Thankful for a Thanksgiving I actually got to rest through. Everyone cooked and cleaned and just kept telling me to take it easy, sit down and enjoy myself. How awesome is that. Thanks Novak's & Kaiser's Mom and Bob your the best.
Monday morning I call Dr. Evans (the most awesomness breast surgeon ever) to make an appt for left side mastectomy. Receptionist says she can definitively get me in next Monday and will try for that Friday. Dr Evans surgery days are only on Mon & Fri. After I hung up was the first time I felt scared. They had been holding off the surgery trying to get the right tumor under control first but the left tumor was still growing fast and spreading into the lymph nodes. A lot could happen in a week for me at this point. I start crying to my mommy... She told me to call nurse Jessie. I pulled myself together and called. Jessie asked me if I got my surgery date yet. I start crying again. Jessie they don't realize what is going on with me and can't get me in until next Monday. It's okay Camille just relax, go take a hot shower and when Dr. Syed gets here we will take care of everything. Shower crying is the best, you don't have to wipe your tears, let the water run down your face and just let go... God I know it isn't an accident that I am here, I know you have a plan for me and can keep this cancer from spreading this week...Heck, You already have, the doctors continue to be amazed that it hasn't spread to other parts of my body. Please help me trust You in all things. 5mins after I get out of the shower Dr. Evans calls me. Camille I don't want you to worry, Dr. Syed called me and I was able to get the surgery room for tomorrow so you need to get in here today for all your pre-op stuff. Another miracle... Mom and I spent 5 hours at the hospital that day getting all my tests done before the next days surgery. Thanks mom, your a trooper. I tell Bob (honorary dad) everything that happened and he says to me,"I've never seen anyone so happy to about getting their breast removed." Wow...I hardly called them breasts anymore, I started calling them tumors, I guess to separate myself from them so I would be ready for this day. But now all of a sudden there breasts again. Early the next morning more shower crying. I have the special, before surgery soap, and as I lather up I felt the need to say good-by. Well...this is it...the last time I see you. We've been through a lot together, from a little raisin to holding my precious children in my arms as you fed them. You've done a swell job and I'm sorry this happened to you and that we have to be separated like this. I just want to say thank you for everything and farewell. Off to the hospital and off comes the tumor. They suggested I stay the night in the hospital but after 4 hours of my mom being my personal nurse, I decided she would be more comfortable taking care of me at home. Thank you Rebecca for the delicious carrot cake (my favorite) I got to eat when I got home. And my sweet Autumn walked up to the car as I was getting out and said, Why Auntie you look so thin, have you lost cancer?!?! Why yes I have!!! Recovery time... Dr. Syed comes in the examination room to see if and/or how much the therapy worked. To the unprofessional eye it looked like a mess, but when he saw it he gave me the biggest smile. Look here Camille, remember the nodules that were all over this section of the skin? They are all gone. Remember the raised lines that were here and here? They are all gone. Remember how this whole area was hard as a rock? Its much softer now!!! I am bumping you up from the 50% I told you in the beginning to a 90% that this is going to work. Dr. Syed was standing between me and my mom and when he moved to the counter to write his notes I could see my mom's face. Tears were streaming down over the biggest smile I'v ever seen...Now those are what I call Tears of Joy! We made phone call after phone call on her speaker phone car blue tooth but know one was picking up, so we left silly messages on everyone's phone.
The drainage tubes from the left side mastectomy was taking forever to finish up, but I was finally in Dr. Evans office getting them removed. She liked how everything was healing up after surgery, Then she wanted to examine the right tumor. She was thrilled to see the difference, and when she moved it she said it had much more mobility. She said she had been looking over the CD's of my mri, pet and ct scans and she can see a margin. She wanted to put a presentation together for January's tumor board meeting and suggest the removal of the tumor. This was truly a miracle, every other surgeon that examined me said I would need one to two years of chemo and radiation before they would even consider removing it. But the majority said it might not ever be able to be removed. Dr. Evans said she was hoping for February... Of 2013? I asked. No this February...2012... I couldn't believe my ears. My heart was beating so fast with glee. I turned to smile at my mom and once again, the tears of joy were welling up in her eyes. She gave Dr. Evans the biggest hug.
Doctor Evans also gave me a prescription for new silicone boobs with bras, so mom and I went to the booby store to try some on. The lady helping us was very nice and gave us plethora of brand new information. We walked out with 2 bras and a perky new set of ta-tas all covered by my insurance. She said they will cover one set a year. I wore them home. They felt so soft but firm I couldn't keep my hands off of them, mom reminded me that the people driving by don't know that they aren't real and suggested I quit playing with them until we get home. We stopped at the grocery store and I was bumping into things because my new perky ones kept getting in my peripheral vision and I kept looking down to see what it was. The other ones were 50 years old and fed 4 kids, they were at least 2 - 3 inches south of where these ones are. It was unusual to have them so close to my chin. Not that I'm complaining, I just have to get use to having young ones again.
Christmas was coming up soon and my plans to spend it with my husband and kids were falling apart as I had two more appointments the following week. These would be the first holidays I have ever missed having with my children since I became a mother. My husband lovingly said I will gladly trade in these ones to have many more in our future. We all agreed.
January 2012
I made it home to celebrate the new year with my family. Zoe spent the night, we watched movies and ate popcorn and fell asleep before midnight. The fireworks woke me up we rolled over and smiled a 'happy new year' and fell back asleep.
I am now back at work and getting chemo and vita C weekly to keep this tumor under control while my skin is healing.
My first appointment with Dr. Chen and he was so happy to see the improvement. I told him before I left that Dr. Syed told me he would be going to Chicago soon to talk about and hopefully train and set up Brachy radiation with Hyperthermia microwave in there cancer centers. He said he was surprised they were doing it so fast... What do you mean?... Well I used your case to explain the need to be updated with these therapies. Camille it is because of you that we are moving forward with this.... Wow, its all making sense to me now. I can see God's handy work in making everything fall into place perfectly to make this happen. This is what it means to look for His Glory in all things, and I have found it in many many ways.
I have been waiting for a phone call from Dr. Evans to see what the tumor board thought of her presentation.
Last Wednesday before I leave for chemo I get the call. She says she wants to go over all her concerns. She wants to have another surgeon in there, a plastic surgeon in case she has to do any skin grafting as she wants it to look the best it can, especially if she needs to take the pec muscle. OK...and...Thats it? What about your concerns on removing the tumor?
Oh Camille I'm not worried about that at all the tumor board unanimously agreed that I can safely remove it now!! See you in February. The call came January 24th. Surgery is on February 3rd. ALLELUIA!!!!!!! More to come....
February 2012
PET/CT scan scheduled. When you go in to do this it is usually done in a mobile unit because the machines are so expensive and when it's mobile they can get the most for their money. So you sit in a big comfy recliner and a nice tech injects you with a highly concentrated glucose attached with glow serum. You must then relax reclined eyes closed in a dark room so none of your muscles are working for 40 min allowing the serum to attach only to the areas that may be malignant. They lay you on a moving table which takes you in and out of a tube with lasers shooting through you detecting all the places that has uptake of serum. The percentages are assessed and the doctors determine the different reasons for serum uptake which can vary depending on each patients history. For me here were the written results:
1. Metabolically active right breast mass, consistent with known cancer.
2. Mild metabolically active left axillary lymph nodes, consistent with known metastasis.
3. Mild metabolically active left seventh rib, lefty clavicular head, concerning for bony metastasis.
4. Right middle lobe mildly metabolically active opacity, likely pneumonia. Suggest followup CT post treatment in 3 to 4 weeks for better characterization.
5. Mildly metabolically active right supraclavicular node is concerning for disease involvement.
Well that didn't sound to promising and took the wind right out of my sails.
I flew out to California the very next day and brought the disk and written results to Dr. Evans and she eased my mind saying. Notice that all the unknown are mild uptakes ranging from 20 to 30, we don't start to worry until they reach up into the two hundreds, so lets figure out the reasons for the uptake. The right lung - you just went through a very aggressive radiation therapy above your lung and post surgery you had walking pneumonia, I think this is a residual result of that.
#7 rib - Three weeks ago you took a neupegen shot which is designed to stimulate the bone marrow and up your white blood cells. I believe at this point any mild uptake we see in your bones will be due to this. Lymph node under the left arm - Surgery for left mastectomy was recently done and fluid uptake can get caught in various scar tissue. Right lymph node above clavicle - This could be an area of concern since it is the flow in which your particular cancer will go, but, it is a mild uptake and only 4x4 mm and this is not operable. We will continue with the scheduled surgery in two days and remove the right tumor mass, then use radiation to attack the lymph node after you are done healing. Well, not thrilled about the last part, but very relieved about the rest of it. She assured me they will be keeping a close eye on all of it but felt at the next PET\CT scan the other uptakes could be gone. She will get her team of experts together to look at the disc and they will have the perfect game plan for me by next Tuesday.
February 3 2012
The day most doctors said would never happen. Up at 5am to get ready for the surgery of my life or should I say surgery for my life. Ann named it "TUMOR FREE FRIDAY". I didn't have a problem saying good-by in the shower this time because the tumor was so big it was disfiguring, so I was excited to have this one removed. The surgery took 3 hours with two doctors working away at scraping every bit of tissue they were able to get there little scalpels on in that area. Then her little trick to avoid skin grafting is to cut off all the bad skin then pull the skin up from the stomach and under the arm, it is amazing how much skin you can pull. Everything feels reeeeally tight right now, but when I can, I will do stretching exercises and after much time it will be as it was. She is amazing. I prayed before that God would help me with the pain and I would be able to manage with only Tylenol as I tend to get sick on various pain meds. They had already started me on Morphine and when they were scheduled to give me more I told them my pain level was at 7 and if I could try 1000 mg of Tylenol. Answered prayer, it took the edge off. I was brought up to my room where mom and Rebecca keep me company until I feel asleep for a couple hours. Dr Evans came up to my room to check on me at 6:30pm and said she felt very positive about the surgery, she was able to remove all the tissue she hoped to while only taking a portion of the muscle, this would make it possible for me to carry on without any physical therapy. I was thrilled as you can imagine. This meant my kayaking days were not over, I could even arm wrestle in a year or so or do a cart wheel. And best of all, I can pick up Zoe and give her a big cuddly hug! Instructions from the doctor to the nurses were to keep me in a crunch position as she didn't want the skin and muscle pulled and the temperature of the room needed to stay at 80 degrees to keep the muscle warm. I was roasting in that room and asked the doctor if i was well enough to go home. She gave me the okey dokey and when mom arrived at 7:30 she helped me dress and gather my things to go.
I am so thankful for all your prayers and I sit here in amazement of where I started and where I am at this moment, it is absolutely miraculous that I am tumor free.
February 7 2012
Well the weekend went very well. Saturday I went grocery shopping with mom then had many visitors come by to see how I was doing. Sunday my cousin Rebecca picked me up to bring me over to Roxie's house (cousin) for a super bowl \ birthday party. I had so much fun and even won the forth quarter pot. I was doing very well with the tylenol until Monday night. The pain wasn't going away and by Tuesday I was happy to be going to my post op doctor appointments. I thought maybe I over did it and either hurt myself or had an infection. Dr. Syed was happy with what he saw and said he would present my case to the tumor board meeting the next day and after getting all the necessary feed back from the board he will give me the game plan at our next appt. Dr. Evans (surgeon) was not concerned with my pain, she said because of the extensive surgery sometimes the area can go into shock along with being well medicated and she felt it was just now waking up and reacting to the surgery as it should, so she was happy about the pain. She gave me a prescription for 800mg of Ibprofen and that seems to be taking the edge off better. She also gave me one for stronger stuff but it tends to make me sick so I will go with this for now.
I got a call from Nancy and she told me about the incredible baskets Stevens Middle School has been putting together for the talent show\auction happening this Friday and how jealous the other schools were of them. You guys are amazing!!!!
I am so sad I have to miss this event. Rachel is planning on recording it for me and possibly web streaming it the night of.
I truly live in the best town ever!!
February 10
Talent show goes on as planned and I heard it was a great success. Many were there and all had fun and enjoyed the many talents our town has to offer. I can't wait to see the video. Around $9000.00 was raised! Incredible that will take care of my surgery, chemo, radiation and doctor appointments for the year and some post check ups for next year. I can't believe that is no longer something I need to worry about. Thank you family, friends and community.
I was receiving many texts from friends and family at the Talent show and I read them through happy tears. It was so nice to hear about the talents and people who were there enjoying themselves while it was happening. I am one blessed lady!
February 22
Last night I sprung a leak in one of my incisions. Apparently the tubes were not draining well enough so it backed up and
came out at a weak point. Dr. Evans had me in her office early this morning and looked it over. She decided to leave everything as is an let it run its course. She said compared to the extensive surgery, if this is all that happens then she was good with it.
March 12
I think the hardest thing to do is wait for test results. After arriving back from Cali. Dr. Chen wanted me to see the radiologist so I scheduled in Sequim thinking I would be with my previous guy, Dr. Foxly who is fabulous, but when I called I found that he was no longer there so they scheduled me with Dr. Zimmerman. She and her nurse Lynn were a pleasant surprise. I had the most wonderful talk with them and all my concerns were put to rest knowing once again God is in control and leading me in the direction I need to go. Dr. Zimmerman is very much into natural medicine which is very unusual and one of the reasons I appreciated Dr. Foxly. Dr Z was to see about radiation on my left chest wall and side and also the right calvicular area as there is a lump there. She decided to biopsy the area before doing any radiation and to do a bone scan. So off I went for more tests. Naomi drove me to the hospital for the biopsy and they used an ultrasound to find the area and retrieve the tissue. The Dr. doing the procedure showed me the ultrasound and said he was concerned as he was seeing things that weren't in the last pet\ct scan, instead of one enlarged lymph node there were now at least four and there was a particular area that was very suspicious and if he were to see it in the breast tissue he would say it was cancer but in this area it could be a few different things, so he decided to take a few tissue samples to have plenty for the pathologist to look at. When I left the hospital I was pretty low and trying to stay positive. A few hours later I was heading to Sequim for my bone scan and called my mom to tell her what was said. I thought I could keep it together but as soon as I started to tell her the flood gates opened. It took here a while to calm me down and she finally said, honey we don't know the results yet so we need to stay on the positive side and pray that God will take care of it all. Okay God I know you are in control and He even gave me a gentle reminder as Naomi and I left the hospital she reminded me of the 3 dreams she had one night 4 months ago or so. She woke up after each one and could feel God's peace and in each dream I was cancer free. She said after the first one she just thought it was a wishful dream but after the third one she knew it was something she was suppose to tell me. It was the only thing that helped me keep it together for the time being.
When doing a bone scan they inject me with a contrast and I have to wait 45 mins for it all to get into the right places, then they put me in a large tube and I slide in and out of it for another 45 mins. So I have plenty of time think..... I thought of my mom and how she must be feeling after the news I just gave her. I started thinking how I would feel if that were my daughter and I made myself cry for my mommy. I thought maybe I should of waited till I had the results, but then again if it were my daughter I would want to be there for her. Ohhh....way to much time to think.
March 14
I just arrived at the cancer treatment center in Renton and what an interesting drive I had. I decided to come by myself knowing I would receive a call today with the results of my biopsy and I just wanted to be alone so I could handle the news what ever it was to be.
Port Angeles weather was cold but not bad and by the time I got to Gardiner the snow was coming down hard and it continued to get heavier as I drove along, a couple of trucks had already slid into the ditch and the police were busy helping out. I decided to put my blue tooth in so I was ready for anything. Moments later the phone rang and it was Sequim cancer center with the results of my biopsy......NO SIGN OF MATASTICY!!!!! Music to my ears, I better call mom. It was the same music to her ears, and after discussing what it was that the Dr. doing the biopsy saw, we decided that either it was just a weird thing or God answered our prayers and took it away. I sit here now hooked up to my infusion machine, 75 grams of vitamin C being pumped into my veins with Herceptin, Navelbien,
5-F-U, Leucovorin and my favorite anti-nausea med waiting to be infused and I am so happy!
APRIL
And POP went the balloon!
Plan A was that I would go to see the radiologist and they would take me off chemo for 8 to 10 weeks which would allow my incision to finish healing. I met Dr. Zimmerman a great lady and terrific radiologist. She said she just recently received information of a new bone scan that is 45% more accurate then my previous CT bone scans and before she took me off the chemo she wanted me to get the new scan done so they had a good base for me. The following Monday I'm back in the tube. results came back which revealed the cancer had metastasized to parts of my bones. Good news is that it is not "bone cancer" but metastasized breast cancer, so the information they have from the chemo sensitivity test they took on the tumor they removed would be very helpful in killing this one. So we are on plan B. Which is stay on the chemo plus adding a daily chemo pill, go to a wound specialist to help with the healing of the opening incision, no radiation. I was very grateful to God, as the former CT scans did not show this clearly and had I not seen Dr. Z I would not of had the new scan and it could of been months till this was found. It is an early detection and the Doctors are very hopeful and positive about this. Please continue to pray for me as I go through this, I don't want to forget the big picture or miss the blessings I know God has in-store for me.
Well the chemo pill is no walk in the park. I need to take 5 pills a day for 21 days then I get 7 days off. Tomorrow is the end of my 7 days off and it has been reeeeally nice not having to take them, I'm even feeling a little anxious because it is also the day I go for my regular weekly chemo treatments too. I just keep telling myself....I'll live..... and that is a very good thing. In 5 weeks I will have a series of test run to see how the chemo is working on the 'mets' (metastatic). My prayer request to you all is that all the chemo I am taking is doing some major damaged to the mets. I am waiting for a miracle and hope to see the doctor stumped, finding there is no evidence of disease anywhere. Its happened to others and even some I know so why not me. So you all have some major praying to do again and I will be praying for all of you too because you are truly a blessing to me and I am alive today because you choose to lift me up and be diligent in praying for a miracle in my life and I got it. That was so awesome.
APRIL 19
I was nervously anticipating taking "The Chemo Pill" this morning. But like a good girl I made my kefir shake and took my medicine. Melanie was driving me to Renton for my weekly chemo infusions and upon arrival they weigh me and take my vitals. Vitals are good but I dropped a few more pounds, total of 10 pounds in 3 weeks. They take 3 vials of blood then hook me up to my big vitamin bag while they run the tests. When they came back we found that my white blood cells have dropped way below the norm and they were unable to administer chemo that day, I told them I had already taken my morning pill and they said that was fine but to stop those for the week too. I know I should of been a bit nervous as I do need to keep the chemo in my system to keep killing the mets, but I had a peace about it for reasons I can't explain. When the nurse left I asked Melanie what she thought and she was my conformation when she said, "I am so relieved right now for you Camille because I really think your body just needs a break from everything and don't worry, God doesn't need chemo to kill cancer." At that moment I knew where my peace was coming from.
After work I had an appointment with the wound specialist, Linda, she decided to change the wound care to a more aggressive treatment so first thing in the morning I will see how that goes. The hope is all the old dead tissue will sluff off this week and we will put a wound vac on it. Word is, it will make a big difference in wound healing even with the chemo so I'm hoping this will sluff it off fast so I can get hooked up with the vac.
MAY 2012
What a tough month this has been. It began with my white blood cell count dropping to the point of causing a bad infection in my wound. The pain was so bad and after seeing a surgeon she determined I need to be in surgery the very next day. She cleaned out the wound and opened it up a little bit more so she could get to the larger part of the infection. After that they were able to order the wound vac and start treatment the next week. They let me know that because my body was so compromised from the chemo and radiation they were giving me a 50/50 chance that this was going to work. That was so discouraging to me because I thought this was a for sure thing. So once you start the therapy you have to go to the hospital every other day to change the dressing, while I was there Dr. Hiesterkamp wanted to send specimen down to the lab to see exactly what bacteria's she was dealing with, turned out to be quite a few. They started me up on 2 different antibiotics, they both needed to be administered I.V. one of them took 30mins and the other took 2hours.
June and July
Well these months were very trying. I ended up in the hospital for and infection in my chest wound that traveled to my lung and filled it with over a liter of fluid causing my breathing to be very limited. I was at Olympic Memorial for one and a half weeks then sent to Virginia Mason in Seattle for almost another 2 weeks. While there I saw a plethora of medical personnel of a variety of professions. They determined the chest wound would not heal and needed plastic surgery. While there they inserted a chest tube to continue draining the lung. This was very painful. They wanted me to see a Thoracic Surgeon who would be returning from a conference in 2 days to see if he could help me and I ended up in the hospital a day longer. He agreed with surgery but explained there was more of a risk involved as the pleura (paper thin lining around the lung) had become fused to the rib. The rib they feel has become dead from radiation and needs to be removed. In fact they feel 3 ribs and part of the sternum could be involved but they won't know until they go in and start cutting. They say it is a 30% chance the surgery could leave me with tubes unmanageable and I could spend the rest of my life in a nursing home. He sent me for another opinion and he had an added option that sounded a little better but the risk was still the same. After going over it again with the first thoracic surgeon, I felt I was being brushed off. This was confirmed when I talked to the plastic surgeon and he said he likes his chances of positive surgery to be up in the 90% not down in the 70% and told him he would rather have the other surgeon do it if he was willing. Well this put my confidence in the surgery to a new low. I have been praying for Gods lead in all this and it has come about in a strange way. As of now I am not able to be on Chemotherapy as it will cause infection to the wound again and they may not be able to fix it next time because of the damage to the lung. I had my church family pray and anoint me and the following Monday had a bone scan. The doctor reported that the cancer was significantly receding from every bone effected. Praise God!! This made it much more tolerable to be off the chemo. So it gave me time to seek God's lead on the surgery.
August
Some really cool things that have happened this month. First off my mommy and sister came to visit and help me through this, they did deep cleaning in my house and helped me get my nutritional level up and my sprits up. They were here for 2 weeks and it was so hard to let them go. Aside from the miraculous receding of the bone, I have been seeing this wonderful wound specialist which put me on a regimen that has been healing the perimeter of the wound. She was so surprised that it made her cry, she said she had patients that were not having to deal with chemo, infection, malnutrition (I lost 40lb in the past 3 months from loss of appetite mostly in the hospital) or any of my other issues and they have not healed as quickly as I have. I also spoke with my oncologist and he is wanting me to look into Hyperbaric Chamber, they have had incredible progress with it where radiation is concern. My Naturopathic doctor had recommended it to me months ago to start after I was finished with chemo treatments.
8/13 I had a really productive day even took a bike ride and that night I was sitting up in bed and John was telling me about something he ate was salty and when I repeated what he said i couldn't say the word salty, i said its saaty, its sorty, its serty john said what are you doing say salty. I said I think i over did it today and I'm just tired so i laid down to sleep but John asked me a question about 5 mins later and when i answered him only jibberish came out. i thought i just needed to get up and walk around and take some deep breaths but John said we were going to the hospital now when we got there they thought I was having a stroke since I couldn't talk and they got me in for a brain scan asap and found a 5 centimeter tumor. It had just swelled enough to effect my speech and my vision started doing wacky things too like taking one eye off of the doctor. They gave me all the appropriate shots to get the swelling down then kept me overnight to keep and eye on me. The next morning I was back to normal (if that is what this all is) and able to go home. They put me on a steroid that will keep the swelling down so I can function well. I saw the radiologist Dr. Zimmerman (the most amazing woman) soon after and she was very confident that with the newest radiation machine they got a year ago, in fact we have right here on the Olympic Peninsula the second radiation machine in the USA the first one went to the Mayo Clinic. People come from all over the world to be treated. She has had great success and felt very confident she could take care of it. She also spoke of the Hyperbaric Chamber, she was in the navy and had a lot of experience with it and had seen it do incredible healing on wounds and bringing blood vessel and cell production to life in tissue and bone. This would be and answer to prayer in my situation. I know this sounds strange but having this brain tumor has put me in a place where it is obvious I need to hold off on the surgery. I was concerned about not being on chemo but two strong prayer warriors Melanie and Naomi at separate times had told me what a peace they had that I was not on the chemo and they felt God was taking care of it. This was confirmed while mom and Lia were here, they went with Janet and I to Seattle for a doctor visit where they took a CT scan and found no uptake to the bones where the cancer was. I was concerned though about the brain tumor arising due to no chemo until I saw the oncologist and he told me about the brain blood blocker and it was most likely unaffected by the chemo due to this natural protection it is a place that has been known metastasis to, we will never know if it is malignant as radiation will just wipe it out and there is no need for a biopsy. So all this said as we are praying for complete healing of the bones, lungs, wound and cancer it is exciting when we see answer to prayer like this. The doctors tell me due to the severity of the wound it could take up to 60 treatments in the Hyperbaric chamber at 2 treatments a day. This would take me to Seattle to live for a month which would be very expensive so I called the hospital in Long Beach where I did my other treatments at and found they have one there and I could stay with my mom again and she could bring me to my treatments. This would be a less expensive option. I am still seeking what it is that God wants me to do and trying to stay positive knowing that complete healing is something God can do and it is His will that I live a long life abundant and full, so I concentrate on living like a well woman. A friend of mine Kim was chased by the hounds of Heaven to send me a great book called the 10 day Spiritual healing (I recommend it to anyone desiring a peace beyond understanding and a real hope for complete healing) it is on the Kenneth Copeland website). It has been such a blessing and keeps me hopeful. It has taught me to pray for this healing in a strong Biblical way and I can see the positive changes in the way I think, feel and act. I know all this has changed my life in many incredible ways that would not be, and I am thankful for the new strengths, insights, relationships and much more I am gaining through this and will continue to fight the good fight. My sweet husband john reads a chapter out of the book to me every night and it is soothing to my mind and brings hope to my Spirit before i rest for the night. Please do continue to pray for my complete healing. My prayer has been that I meet all my grandchildren and they know me well. And I look forward to it, knowing the great promises of healing I have in a Great God.
MORE IN AUGUST Was up most the night thinking about my 8am appointment with the oncologists. I was hoping since the radiologist was in the same building i could see what was going on with the insurance. When I got there I had many questions as a variety of issues have come up but he put many of them to rest and feels most will resolve after the tumor is removed. We did a complete scan of the bones and they are stable so that is answer to prayer as I haven't been on the full regiment of chemo, so the hormone therapy is doing its job. There are a few biopsy's they will have to do on a couple new little bumps so please be praying for a big negative on those, because it could slow down the hyperbaric chamber idea to start working on the wound. While I was there the doctor went over and got the radiation nurse to come over and get me set up for consultation. He also got me in right away to get my Herceptin and saved me a trip to Renton. While the pharmacist was mixing it up, I got my consult. And she told me they just received conformation from insurance and could start the mapping on Thursday, then radiation beginning of next week. All this and i was out of there by 11am. I like when God schedules things. First day back to work tomorrow, excited to see how it will all be working out this school year, I have a couple sweet new girls that I will be working with. Praying I will be able to schedule the radiation around my job.
STILL MORE IN AUGUST
I had my fitting for the radiation on the brain tumor to come. incredibly enough, here on the Olympics we have the second radiation machine in the USA that has change the radiation world, The Varian "True Beam" Linear Accelerator. They set me up on the table and mix a bag o goop, activate it then put it under my head and it swells up to perfectly fit around it just up past my ears. Then they make a mouth mold and when the two are clamp together they hold your head perfectly still and you cannot budge. The alternative to this, which is still done in many top notch hospitals is to have screws surgically inserted to your scull then you are clamped down to the table for a less exact radiation treatment. True Beam is absolute exact. Dr. Zimmerman is grrrrreat. Answered prayer, Radiation schedule is at 4pm. I will work my full schedule and Naomi said she willl drive me over.
Isaiah 53:4-5 You, Lord, have taken my grief's (sicknesses, weaknesses and distresses) and carried my sorrows and pains. You were wounded for my transgressions, bruised for my guilt and iniquities; the chastisement needed for my peace and well-being was upon You, Jesus, and by your stripes I am healed and made whole.
I love that this is reads present tense "I am healed" so I am really just experiencing the manifestation of my complete healing unfold.
SEPTEMBER
Experiencing more and more side effects and had to go to the emergency. My face was swelling up and weakness in my legs is getting worse. I've lost 70% use of my right arm and my vision will sporadically get a little blurred. That day I was very foggy headed. The doctor said since the tumor is on the left side it is causing the right arm to weaken and he feels it will come back after the tumor is gone and pressure released. The steroids they have me on work the opposite of what you would think as these ones weaken the body and they don't like to have people on them for more the a couple weeks, I have been on them over a month and need to stay on them as they are keeping the tumor area from swelling. They are now throwing my blood sugars off and all I can say is God is good as my blood sugar was 427 (normal is 150) The doctor said I should of been passed out somewhere but instead I had worked all day and been driving around. I am now having to do all the diabetic stuff, pokes and shots. I am learning so much.
Wednesday 12th got my first radiation shot yippy!! It takes an hour from start to finish, They put me on the table and fit my head into the mold they made with the mouth piece then clamp it down nice and tight. I just closed my eyes an have d tried to relax and I did such a good job because 45 min later I was waking up from a nice little nap. Naomi and Janet were waiting for me when I came out they have been such a great support to me (i love you bunches) Friday i got my second shot and it went as perfect as my first. The radiation crew are the best. Next week I will go in on Monday, Wednesday and Friday that will be enough to completely blast this sucker to smithereens. In the mean time i am able to still work and I rest a lot in between.
Isaiah 40:29, 31 You give power to me when I am faint and weary. In my weakness, You increase strength in me. I wait for You expect, look for, and hope in you) and You renew my strength and power. I will lift up with wings of strength and rise as an eagle. i shall run and not be weary, i shall walk and not faint or become tired.
MORE SEPTEMBER
Friday 21st my last radiation shot Alleluia...I came out of the treatment room to the Doctor and techs holding up a certificate of completion. then around the next corner were my faithful friends Janet and Naomi BIG HUGS!!!! Dr. Kummets nurse was there to whisk me off to Oncology for the next part of this journey, addressing the suspicious cluster on lumps below the chest wound. We had our talk, did and exam to compare them to the pictures we took last month and he felt there was little change and he set me up for a needle biopsy on Monday with the results on Wednesday. Monday they called me at 9am to come in at 10am I was at work but able to take my lunch break early. The pathologist decided to take a sample from 3 different areas 2 lumps below the chest wound and 1 lump above it next to the clavicle bone. They don't give you anything to numb you up because they have to stick a needle in you and if they numb you then its 2 needles, but the aspiration needle is reeeeeally big and they have to move it around a bit while there in there. Owie!!! They put the fluid in separate containers but also make a slide of each one to look at right away to make sure they have what they need while I'm still there in case they have to get more. Well when he came back in he said he got good fluid and even added that he did not see any cancer cells on any of the slides!!!!! Of course they will examine all the fluid and give a full report on Wednesday, but I asked him if the percentage was high or low that the rest would be clear. He said it looks good and he would send the slide report to Dr. Kummet that day and the full report the next day. thank you for your prayer support God is listening and answering. The Doctors had already determined these were cancer and were planning how they were going to combat it. The biggest problem with this is that chemotherapy is what caused the wound to get so infected and reverse the healing process so I can't do chemo until the wound is healed as infection could be even worse then last time and unmanageable. it would be quite the dilemma so I am thrilled to no end for answered prayer.
Philippians 1:6 I am convinced and sure that He who began a good work in me will continue until the day of Jesus Christ, developing and perfecting and bringing it to full completion in me.
LAST IN SEPETMBER
All the results are in and all the fluid was negative. The Doctor is still stumped, I love it when that happens!!! I know that God healed me!!! Now I am cleared to go to California and start the healing of this hole in my chest. I will be so happy not to have to do dressing changes or even just looking at it. It's pretty freaky looking at your rib bones. I was on the website for Long Beach Memorial Hosp. hyperbaric chamber and noticed a list of things that were important to tell your doctor and one of them had to do with water in the pleura which is what I was hospitalized for last Spring. It didn't say you couldn't do it, so I am hoping and asking for your prayers again that all goes well and they are able to get me in the chamber. I called Dr. Syed in Calif. to set up an appointment and they can get me in at 3:00pm on the 10th of October. I called my mom to let her know that I would be arriving around then but hoping to work right up to the day. Well we found a ticket soon after that will put me in Long Beach at 1pm on the 10th. Mom said we will have just enough time for a quick lunch before my appointment. So things are already working out. Oh yeah the plane ticket cost $104.87. What a deal!!!!
Philippians 4:6-7 I will not fret or have anxiety about anything, but in every circumstance and in everything, by prayer and petition with thanksgiving, continue to make my requests known to God. God's peace which transcends all understanding, shall garrison and mount guard over my heart and mind in Christ Jesus
October
This has been a very emotionally roller coaster month! After arriving in California I expected everything to go as well as it went last time. Dr. Syed the man who spearheaded it all last year had a family emergency and was in India. So i was left with a substitute doctor who was very nice but knew nothing about me and started running tests. He was unsure of the report I brought him from the doctors back home and wanted tests done again as he felt I had cancer close to the wound site and didn't think i could go into Hyperbaric or surgery. Not what I waned to hear. Next was an appt with Dr. Evans my surgeon she was much more optimistic and wanted me in hyperbaric and felt we should at least get the ball rolling with the insurance while we are waiting for all the tests to come back. Tests ordered were Pet/CT scan on the whole body and an MRi of the brain, a series of blood work and chest x-ray. It took a couple weeks to get them all done and the results, which is how long it took for the insurance to preapprove the hyperbaric treatment. the results of the tests were not much help because when you see the areas light up in the body they could be 1 of 2 things, it either shows the area is infected or the area has a tumor which could be malignant or benign. And it did light up in the area of the wound. If there is cancer there then everything changes as they cannot do surgery to cover up the wound if cancer exist. I did take a test before I left home, it was the aspirated biopsy on the lumps below the wound which they found to be clear of cancer and since it was linked with the more suspicious lumps it was considered to be so for all of them as they didn't want to disturb the lumps closest to the wound because healing in that area is not good. I continue to stand on that truth, there is no cancer in that area and healing will take place in due time. i had an appt with Dr. Hurvitz, she is the head of the UCLA breast cancer research center and she was very optimistic about the cancer she spoke of being able to do maintenance on the cancer cells to keep them under control and not growing. In many cases study shows that the life expand of the women who were cured and women who's cancer was managed were the same. That was encouraging and she felt with a good regiment of hormone blocking medicine would do this for me. I am on Herceptin, Arimidex, tykerb, and exgevia (not sure of the spelling) They all starve the cancer in one way or another and make it difficult for it to grow. They will run a blood test tomorrow get tumor markers and watch it that way seeing if the meds are working. She also spoke of a drug that the FDA would be approving early next year that would be beneficial to me as it targets the cancer cell only then releases Herceptin and a chemo directly into the cell, it does not affect any other cells but the cancer cells so the bad effects like losing your hair and getting sick doesn't happen.(amazing) It is specific for my type of cancer too so she said when i get this wound taken care of I should be all healed up by the time the drug is released, so that was very hopeful. Next i had an appt with a group of doctors, Dr. Miller (Hyperbaric) had a Thoracic Surgeon and Plastic Surgeon meet with me to discuss the wound. They came up with a plan to do 20 treatments of hyperbaric then go into surgery to clean out all the dead tissue and bone, then they would leave the wound open and put me back into hyperbaric to allow more healing to take place. In the mean time they will check all the tissue and bones for cancer.. if any is found then we can't go on but when they find no cancer and see the wound being miraculously healed then they will take me back into surgery and do a skin graft to close up the hole. Next week they will be doing a test on my bones in the wound area to see how deep the necrosis is, The plastic surgeon was very positive and said he had seen much worse and found there was much more live bone then expected so he would stay positive with me. If there is to much dead bone to remove and it interferes with the lungs then they will need to come up with a different plan. So as you can see much prayer is needed. The most important is that there is no cancer any where near the chest wound area and that my bones are healthy and they only have to scrape a small amount off the surface. Also for healing of the wound itself because as of now it has not grown any new tissue on its own for months. i just had my first hyperbaric treatment yesterday 10/30 and will go every day, we are expecting to see healing so the surgeons have something to attach the skin graft to when the time comes.
Psalm 91 Because i have made You Lord, my refuge, and the Most High my dwelling place, there shall no evil befall me, nor any plague or calamity come near my house. Because i have set my love on You Lord, therefore You deliver me. You set me securely on high, because i have known Your Name. I call upon You Lord and You answer me in trouble. You deliver and honor me. With LONG LIFE (I like that part) You will satisfy me and show me Your salvation.
November
This has been a whirl wind month so many doctors have looked at the inside of me by way of ultrasounds, xrays, bone scans, ct scans and pet scans. It delayed the hyperbaric treatment that I originally came here for by weeks.
I really expected to be in and out of surgery by now, although I am thankful they are being careful with me. The
hyperbaric treatments are quite interesting. It is 100% oxygen and I am closed up in a big clear tube. Because it is highly
combustible you can only wear 100% cotton so there is no possibility of static electricity. There is a TV attached to the outside of the tube so I can watch a movie while I am pumped up with oxygen. I am in there for 1 ½ hours.
Mom sits on the outside watching the movie with me and there is a phone she can pick up to laugh with me at the silly parts. I will do 1 treatment daily for 20 days then they will do the first surgery of debris removal in the wound. On the 23th I had a bone scan which was very important as it would tell me if there is blood flow in the 3 exposed rib bones. By the
looks of it the doctors were not hopeful but I told them that God has given me much hope and so I would stay hopeful.
I got the results on the 26th and they found blood flow in all the ribs. So surgery was scheduled for December 4th. This was a huge deal because of the pleura being attached to the bone had made this surgery so dangerous. There was a 30% chance I would end up with unmanageable chest tubes that would put me in a nursing home for the rest of my life.
When I got the results the doctor was still a little pessimistic, he said the other doctor felt this could work and was staying on the positive side but he said he could only give me a 50% chance that surgery would be successful.
DECEMBER
Day of surgery. Up at 6am to be at the hospital for prep at 8am and surgery at 10am. I awoke to the first smile I'v seen on my surgeons face. He said he was pleasantly surprised at how well surgery went as he had not expected to see as much live tissue as he saw. He said for the first time he felt this was going to work out. What a great feeling that was to know that all this time away from my family again for Thanksgiving and Christmas would ensure us to have many more other Christmas's to come. They put a wound vac on while I was still in surgery and brought me down to the hyperbaric chamber the very next morning to help in the healing. I stayed a couple days in the hospital, but continued hyperbaric every other day making sure the granulation of the tissue would keep getting better. It kept getting better, but it is slow going so the doctor gave me a choice. He said the hyperbaric had done its job and I had the choice of just keeping on the wound vac and going home until the healing was at 90% or more.
JANUARY 2013
I arrived back home in Washington January 5th then the next morning spent the day at Sierra's house for a delicious Christmas breakfast with family and friends. Monday morning came to soon and when the alarm went off I got up to get ready for work. It was nice to be back with my fabulous colleagues and sweet students. I also found it nice to be in my old normal again.
I had an appointment with the wound care nurse to begin my wound care, then another appointment with the oncologist to continue all my meds. I was set up for Monday Wednesday Friday to have the wound vac dressing changed and every three weeks I have my Herceptin drip then an xgeva shot every four weeks and 4 pills of tycurb taken every day along with 1 aremidex. This is the recipe to keep the bone cancer from growing while we concentrate on healing the wound. They are hormone blockers that target the cancer cells and block the hormones that the cancer needs to feed on to grow. The hope is to stop the growth or slow it way down. It has been successfully used for many years for Her2nu positive breast cancer. This allows me not to be on any chemotherapy that causes the cells to die and make healing very hard for my body to do. I will get a bone scan done soon to see if it is working.
FEBRUARY
On the 4th I got a bone scan done and results came the following Wednesday. They said that on all the bone mets they found none of the cancer had grown and in 4 areas it had actually receded. When I asked them how it could recede he said when it comes to me they stopped trying to figure out how it all works out, they just say, yea Camille's body. This was the best news as now I can relax about the healing of the chest wound taking so long. Especially since I got a yeast rash from the draping around the wound and had to go off the wound vac for over 2 weeks so healing is even a bit slower. March 15th I will have a brain scan done to make sure all is well in that area. My right arm continues to grow stronger, it still does not have the range of motion but I will continue stretch and exercise it. I know the most important thing is to keep a good attitude and have faith and hope for a long future, I always say I have a lot of people praying for me and big God so with all that going for me I am doing just that. My days are filled with work, doctor apt, Mariah's basketball games and spending what leftover time I find with my husband, I am thankful for his patients and care for me. I am thankful for the friends that come and sit with me in the hospital knowing that is the only time I have to visit them.
Carpe diem (Cease the day) is one of my new favorite things to remember.
MARCH
A long day in the hospital yesterday. A wound vac change, blood work done and a brain scan. I didn't get out of there until 7pm I should get the results on Tuesday during my Dr. appointment with the oncologist. I'm glad the people who work at the hospital are nice happy people and fun to be around. The wound is looking pretty good, still not ready for a trip to California, there is some concern for a small infection in a tiny section of the wound and they are not sure what to do with it yet. We have Spring break coming up first week of April so my choices are to go to Calif and let the docs there check it out or go over to Seattle area and talk with the docs that brought me back to life last summer. There is a wound care doctor, plastic surgeon and thoracic surgeon there that hasn't seen me since my brain tumor and the doctors in Calif said it would be a good idea to fill them in just incase we needed them. Monday, Wednesday, Friday I will go to the short stay at the hospital for wound vac dressing change 3:30pm-5:00pm, every other Tuesday or Thursday to Sequim for medicine infusions 4:00pm-5:30pm. Between all that I'm pretty tired but try to get some cuddle time with Zoe and quality time with the rest of my family and friends. Sierra and Joe are inches away from owning their first home and Ross is heading to Japan tonight for some long awaited quality time with his fiancée, Kyeong. Mariah will be signing her letter of acceptance to Olympic College where she is receiving a double scholarship, one for basketball and one for fastpitch. And Rylan is enjoying his job working in a lumber mill and meeting new friends. It has been very tough to go through this season of our lives fighting a disease so these fun things are happily welcomed. My emotions continue to ride the roller-coaster but my faith keeps me grounded even through the arguments I sporadically have with the One who knit me in my mothers womb. I try and focus on all the miracles He has blessed me with, but never imagined I would still be dealing with this disease 6 years later. I am thankful to still be able to strive for a relationship with all my unborn grandchildren but there are days when Heaven looks pretty good. I know my place is here and I am very happy about that. My hope is to continue the good fight and win!! One of my favorite sayings I heard on The Best Exotic Marigold Hotel, "Everything works out in the end, and if its not working out, its not the end yet!!!"
APRIL 2013
Well April just began and Spring break just ended and we are all back to school now and just in time as the rain has decided to water this part of the world. My rhubarb plant has to be the fastest growing vegetable in the world, every day I walk by it has added an inch to its leaves and/or a new red bulb has popped out of the ground. I love the Spring as it reminds me of new life and the promises I have from a Great GOD. I am leaning heavily on them now as my condition has slightly changed. I developed a small lump on my upper middle chest about 2 inch below my chin and the biopsy has come back positive. After consulting with the doctors they are hoping the new chemo the FDA just approved around my birthday will be covered by my insurance as it will be exactly what I need to began fighting this bad boy. Now I also made a trip to Seattle to visit the wound doctor (Jessica Pierce) and plastic surgeon (Dr. Schlinker). They both had great news for me. They have not seen my wound since last summer and had very little hope for its healing back then. When they saw it this time they couldn't be happier, they said it is ready for an addadictomy, this is a process where they take the foreskin which has been donated from the many circumcises done daily and process them for use in wound care, in my case it will do two things, one help my wound to build up granulation which is healthy tissue and two, when they see it working it tells them my wound will accept a skin graft. They place the processed skin into the wound and leave it on for a week to allow the healthy tissue to be used by my cells then they remove what is left after a week and replace it with a new one, this will happen for a couple months or until it is absolutely ready for skin graft. Now I questioned Dr. Pierce about the name of the procedure and if this was true.... Come on... addadictomy....foreskin...LOL she informed me this is what her office calls it cause its funny and easier to remember and you know she's right cause I don't even remember what its real name is LOL. So I told her I would be able to go ahead with it since I wasn't Jewish. Hee Hee Hee. Although God has given me a peace about this my human mind keeps butting in trying to rob me of this peace as I wait for the insurance to give the answer for both procedures. I had a full body Pet scan yesterday to make absolute sure it is no where else and will get the results for that on Thursday. Until then I will keep thinking positive thoughts knowing you all are praying for me and expecting the best to arise in me. I know God has a plan and I will keep seeking it.
2 Timothy 1:7 God has not given me a spirit of timidity and fear. He has given me a spirit of power and of love and of a calm and well-balanced mind, discipline and self-control.
More April stuff
Well the pet scan results are in and they are positive :( I was a bit disappointed and had a little argument with my maker, I reminded Him of all the people praying for me and of all the scripture I read to cover myself with (when I remember) and how I try reeeally hard (and sometimes hit the mark) to glorify Him with everything that has happened to me so all this, which seems so bad, could hopefully be used for good. He reminded me of the Apostle Paul and how when he came to God over and over again asking to take the thorn from his side, God replied "My Grace Is Sufficient for you. Well I didn't like that answer anymore then Paul probably did. I had a chat with Mary yesterday who is also going through a tough time, I wanted to encourage her and was reminded about a time when I was laying in bed in that space between asleep and awake when I started chatting with God and I said, "You know, You are the beginning and the end, the holder of all space and time so what if we go back in time to the place where I have to make the decision to do the tissue transfer surgery and instead of saying yes, I say no, then all this is wiped away, there is no cancer, no mastectomy, no infection, now wound, I just get my life back." And He said "Okay, I will do that for you, but if we do this remember everything that has happened between then and now will also be wiped away." Well I started thinking about "everything" and the first thing that came to mind was my family and even though we have this thorn in our sides some how their faith has grown and their attitude towards life is clearer as they watch God work in my life and see His power working in their lives. I thought of my mom and Bob and the day he told me that he and mom prayed for me at night together before they go to sleep. My mom has her own prayer chain and they are so faithful to pray for me as she keeps them well informed so their prayers are specific. Mom and dad are not normally a praying people yet their relationship with God is somehow closer because of this. My sister Lia is the same way but now she finds herself praying while she takes a walk, drives to work, taking a shower, in so much of her day she talks to God and not just about me but everything an she finds that her days seem more hopeful and her attitude is brighter. She even agreed to read the Bible through with me this year. People have come together against all odds to support me with spaghetti feeds, talent shows, cards, dinners, uplifting talks to keep me centered, driving me to appointments, people who have never met me and know my situation through a friend have sent me cards to tell me they are praying for me and putting me on other prayer lists and much more. Many of them say how they are touched to see God working in me and some how this thorn in my side has brought them closer to the One who causes the sun to rise and fall and yet He is so personal with me that He has the hairs on my head counted (and believe me with all the chemo injected and hair coming and going that has been a chore). Am I reeeeally ready to wipe away my cancer journey in its entirety? No, this is when I realized that His Grace is sufficient for me. You know in this life shit happens, God didn't throw this at me, it happened because this is just the world that we live in, it is full of disease and bad things happen because sin exists in this world and we are all susceptible. When life happens it is how we deal with it that makes a difference in life, we can choose to make it better or wallow in our sorrow and give up and let it take over our life. Our Choice. I have found that when I choose to look to God for my answers (doesn't always happen but I keep trying) my attitude was better, I was more hopeful, my faith grew stronger and others were blessed. His Grace is sufficient for me. I went to see one of my favorite doctors Jessica and showed her my pet scan results and she put it in perspective for me, she said I was giving this way to much negative energy as if I just found out I have cancer. She reminded me that the cancer was already in my bones, so no big surprise, we just have to move forward with what is already in place, the new chemo that just got approved in February is the perfect fit for my type of cancer and had this happened last year there would not of been a choice for me and though we were trying to hold off in using it until the wound was healed, but there is a time for everything under the Heavens, and now just happens to be the time for me. So as the famous Dori (from finding Nemo) put it.... Just keep swimming, Just keep swimming, just keep swimming swimming swimming, what do we do we swim swim swim!!!
Please be praying the Chemo and Dermagraft (for the wound) is approved by my insurance.
MAY 30
After a call to the insurance company every other day for the entire month to see if my chemo had been approved they finally gave me the answer I had been hoping for. I just can't believe it took 30 days to get the approval, and let me tell you, I am not naturally an anxious person but everytime I hung up the phone with the insurance company I wanted to scream as the tumor is just below the skins surface and I can actually watch it grow and every day that passed made me more angry then the last. Dermagraft is on the back burner for now until the cancer is gone.
I called Dr. Kummet's office as soon as I found out to let them know the approval letter was being mailed out that day and schedule the infusion. Dr. Kummet said no way are we waiting for the letter to get here!!! He had his office call the insurance company and fax the papers over asap. When they got there they called me and scheduled my infusion for the very next day. What a great doc!
Friday....Work is over and off I go to Sequim for my infusion. It was a 2 hour drip and now I have the weekend to see how I will handle it. We measured the lumps and took pictures so we can watch for any noticeable changes. He said it could take 2 to 3 months before we see anything. My prayer was that God would take the chemo and cause it to work triple overtime!!!
JUNE
I handled the chemo pretty well, I didn't get sick but my tummy was a little sensitive so I lived on Miso soup and Wonton soup and in the morning a protein/vita shake. I've been able to have other things here and there but even now what I handle the best is still that. I still go in Mondays and Thursdays for my vitamin C infusions and every 3weeks they will trade in my Thursday vita C for the chemo. This Thursday I will receive my second infusion of Kadcyla (the official new name of the chemo). The exciting news is the changes in the lumps that have already taken place!! I had a lump the size of a pea on the lower right side at the rib and while we were waiting for the insurance to come through it opened up a little and once it does that it does not heal until the cancer starts dying which is one of the reasons my doctor was getting so angry. Well yesterday while I was changing the dressing on the chest wound I noticed the lump was flattening and it was completely healed over!! This is so exciting for me as not only does it mean the chemo is working on my type of cancer but my prayers have also been answered as it is working triple overtime. I have a doctors appt. tomorrow and can't wait for Dr. Kummet to see the changes.
JUNE 17
Whirl wind day today. Woke up not feeling well and John came home from work sick too so I thought it was just that. But when I went to change my chest wound dressing I noticed there was an abcest that developed over night on the side of the wound so John took me into the emergency. It was about 11:00 in the morning. I got in right away and when the doctor saw me he said it looked like a simple abscess and he would most likely do a 1inch slice across it, drain and pack it and send me home as it could all be done in the emergency room. But first he wanted a couple of tests run so they started with EKG, CTscan and blood work. When they took the CT scan I asked if they were going to do a contrast with it and they said the doctor didn't order it so he must not need it. Weird because they always do a contrast with anything having to do with my chest since its so compromised. When he got the results back the said the infection had gone into my lungs and the heart looks ify too so they wanted me to go to Seattle where they have a Thoracic surgeon that will be needed in the surgery. It is now 8pm and I have not eaten all day because they couldn't decide on surgery. I told them I wanted to have someone drive me over and they were fine with it, but when they called the Thoracic surgeon on duty at Virginia Mason Hosp he said due to the information he got he wanted me ambulanced over. So off I go and it was a fun ride. It usually takes 1hr and 30min to get to Kingston ferry and we got there in 55min. I felt fine so I was sitting up watching all the cars part for us, boy that EMT was a great driver then when we got to the ferry everyone had to be rearranged so we could be the first one off on the other side which usually takes 35min I had no idea those ferry's could move so fast, we got to the other side in 18min. So into the Virginia Mason Hospital I go. The Doctor comes in and says you look pretty stable I wonder why they had you come over by ambulance?!?! My question exactly I say. Sierra wanted to come over right away, but I told her there was no reason and to just get a good nights sleep and come in the morning. The next morning the Thoracic surgeon came in around 10ish and asked if they had done a contrast with the CTscan because he didn't see it anywhere, and to see what he needs to see he needed a contrast. Sooooo off the radiologist I go. They are still not allowing me to eat in case of needed surgery. I call in the nurse at 1pm and ask if the decision has been made and she said it was added in my notes that I can be on a normal diet but she wanted to confirm with the doctor first. 2pm the doc finally comes in to tell me that I can eat whatever I want and according to the scan the lungs and the heart are not involved at all with the infection and he would be in later to do a 1inch slice across the abscess drain and pack it and he wanted me to stay one more night so he could watch for bleeding and if it looks good he will release me in the morning. Wow isn't that what they should of done in the first place at the other hospital?!?! That was a waste of a lot of $ and time. But isn't that how it goes sometimes? And I did get the most BITCHEN ambulance ride ever! My daughter Sierra is the best, she came the very next morning early and never left my side. She brought her computer and movies for us to watch and we just sat around all day enjoying eachothers company while we waited for the doctor. There was this window sill that was about 2feet wide and 4feet long right next to my bed and she put pillows up there and slept there rolled up in a little ball. She said the chair got uncomfortable and wouldn't recline. She is the sweetest ever!
FORTH OF JULY
Another year I get to celebrate our independence, how thankful am I!!!!! The wound is looking good, there is a bit of pain involved so the doctors have been trying a series of drugs on me so I am not using so much IBprofin and Tylenol. He said he wants my liver and kidneys in tiptop shape to handle all the other stuff they want to use to kill the cancer. Which is going well. The lumps continue to shrink, so keep praying that God uses the Kadcycla Chemo to work triple time on the cancer. The pain med that worked the best without making me sick is Oxycodone. They say it won't hurt any of my organs but it is addicting. Great. but after all is done we can slowly take me down and I will be good as new. I can't wait for that day to come. 'GOOD AS NEW'
Mariah is working at the Red Lion now and it is a beautiful hotel on the waterfront, so they are having a BBQ for staff and family and have blocked off a nice grassy area on the waterside of the hotel and brought out chairs and a huge spread of food. The firework display is shot off down the waterfront trail about 1/4th mile down from the hotel so it will be a nice spot to sit and watch. I am thankful for the Freedom we have in the great USA and I am so proud of our military and the sacrifice they and their families have made so we can celebrate this glorious day. And thank you Lord for the freedom you give us in Christ so we can be set free from the chains of sin and live an eternal life in a glorious place, 'Heaven' Where I really will be GOOD AS NEW!!!!
August 2013
Well they did a MRI to check out the progress and found that the Kadcycla is not working perfectly and some of the tumors have increased. That was so surprising to hear. I had felt for sure that this was going to work as it was so perfect for all that ailed me. When I found out the news I didn't understand why. I felt my hope starting to slip away. Three of the tumors around the base of the neck had grown large enough that the doctor was concerned and wanted me to talk to Dr. Zimmerman about radiating the whole area. She agreed and we started a pretty strong zap 5 days a week. Two weeks into it I was having more pain in my lower back, left side. I went to the Chiropractor and he found a lump and wanted me to get it checked out. I did and we found another tumor so Dr. Zimmerman just added it on to the rest of the radiation. She said she was hoping the insurance would put it through asap so we could shoot it along with the others. It has usually taken up to 3 weeks for them to put through an okey dokey. Naomi and I left and met up with Karen Q. and we had a prayer time. Karen went straight to the source and prayed that the insurance would clear this in record time. Well, the next day I went to my radiation appt and they said I had to go in to get the lower back mapped out for radiation because the insurance had cleared it. She said she had never seen it clear that fast. Well after the CT scan it has to go to about 3 different doctors to okay the mapping and it usually takes a week. The next day when I went in for my appt they said they were going to zap the back. Apparently while one of the doctors were looking at my scan the others happen to come in for one reason or another and while they were there decided to look it over and it got okayed. Miraculously 3 days later I was getting the radiation on that area. Within a week my back was starting to feel better. The tumor had wrapped around a muscle which was causing the pain and it responded very well to the radiation, so did the other tumors around my neck. Because they had to use a strong ray on the lower neck area it became very burned and blistered. Ouch. I remembered Dr. Gignac telling me how successful tea tree oil worked on radiation burns so I got some aloe vera and mix it with the tea tree oil and slathered it all over the area, it healed up fast and nicely.
September 2013
While at a wedding I was turned around in my chair watching the sweet couple listen to their bestes of friends reveal to the rest of us their secrets in a toast. As I leaned back against the table I felt a bump so I adjusted my sweater and leaned back against the table again I still felt the bump so I adjusted my dress to see if that would make a difference but it didn't and when I put my hand back to feel it I found it was another lump. The next day I showed it to Dr. Zimmerman and she said the problem is that she could just zap it but soon another will pop up and then another and what I really need is something systemic to reach all the places growing that we can't see. The problem with that is it means chemo and last time I was on a chemo that was not targeted to the cancer cells my wound got horribly infected and I ended up in the hospital for 3 weeks. The doctors then told me that if it gets that bad again they don't know if they could get it back under control. All I could think of was that I could possibly go back to California and see if Hyperthermia could be an option for me. I called and made an appt Dr. Syed could get me in Oct 2. I talked to Dr. Kummet in Sequim and he asked if I would first see if he could find a specialist that could help me. He called the Seattle Cancer Care Alliance and found a doctor who specializes in Her2new breast cancer and had just finished a clinical trial that was very successful. Dr. Lupe Salazar had found that a cream used for genital warts called Imiquimod was the only thing that worked without reoccurrence because it caused the body to use its own immune system to increase in the area needed. She tested it with a chemo Abraxane and found that the two of them complemented each other so well that they are publishing it and getting ready to distribute it to the nation in December. The earliest appointment she had was October 2. So now I had to make the choice to stay here or go to California. I took a pole and the consensus was to see what Dr. Salazar had to say so I cancelled my appt in California. I really liked Dr. Salazar the moment she walked into the room. She is very down to earth and very through. I liked what she had to say and felt very hopeful, more then I have in quite a while. I've also gotten back on Kagen water the high alkaline water, and I have been feeling really well. My energy level is up and my pain is lessened. I am also boosting up my vitamins and hopefully getting to a place where I can handle chemo again. Dr. S said that when using the cream right over the tumor site it allowed her to lowered the milligrams of the chemo from 130 to 80 and patients are infused low doses once a week instead of a high dose every 3 to 4 weeks. She found with certain high doses of vitamins most of her patients did not have mouth sores or neuropathy in their feet, although they still lost their hair. The majority of them had healing in 3 months and the rest had healing in 6+months. I thought when she looked at my tumor sites and wound she would think they were awful but she didn't even blink and eye, she had seen far worse and still had success. October 17th is the starting date should I choose to do it. So far its a yes.
October
Well I have now completed 2 rounds of Chemo with the Imiquimod cream. So far so good I haven't felt to bad and my energy level is pretty good. I even painted my kitchen to match the new counters my wonderful husband surprised me with. The last appointment I was at they said my red blood cells were low and asked if I was feeling tired, they were surprised when I told them how well I had been doing so they allowed me to receive the chemo and said they would check my iron next time and if it went down any more I may have to get a blood transfusion. There are so many illnesses going around I have been drinking apple cider vinegar tea with lemon and honey hoping to stay well. John and Rylan are both feeling under the weather so I have them drinking tea too and keeping their distance from me. I remember Dr. Gignac telling me that the chemo will work in my system against the cancer cells for 3 to 4 days and after that I can drink lots of water to flush the chemicals out of my system. I figured the Kangen water will be helpful for this. Went to the eye doctor because my vision has changed since I did hyperbaric. They said It sometimes changes a persons vision and sometimes changes back. Mine flip flopped, my long distance is now blurry and reading is better, it was opposite so they changed my lenses and I should be seeing perfect again in 10 days. I was happy to have such an easy fix, that doesn't happen often.
November
Well, I finished my first round of chemo with the imiqumod and so far so good. The tumors are changing, they kind of look like they are melting but lots of open wounds and scabbing going on, this is either very good or very bad, we will find out Tuesday when I go see Dr. Salazar. Naomi, Janet, Mariah and I went to see the wound specialist Dr. Jess and she was very pleased with what she saw, even though the wound has been causing me more pain since I started on the chemo it still showed healing. That was very good news, I had been worried about it. My blood work came back good. I told Dr. Kummet that I used cold pressed sesame seed oil after my showers on my skin as Dr. Chen had me do that when my red blood cells would drop and it was a quick fix. Dr. Kummet quickly started looking it up to see why. I love that he is so open to new stuff that could help his patients. So no blood transfusion. Yippy!! My hair is starting to fall out so it looks like I will have to go into my warrior mode and shave a Mohawk for a day by next week. Zoe always gets a kick out of it. I put my hats in a box and stuck it in storage so if I knew anyone who might need them I could pass them on, unfortunately this is the second time I pass them back to me. Maybe that's the problem....I need to burn them or something drastic like that.
Naomi and I went to see Dr. Salazar and right away I told her that I will be able tell how things are going when I see the look on your face as she sees the changes in the tumors. Well lets take a look, she says.....Wow this is exactly what I was hoping to see!!! That was all I needed to hear. She began measuring the tumors on the side under my right arm, then she went back to her notes, scratched her head and came back to measure them again. I asked if everything was alright and she said it's great I just want to double check to see how great. After she was finished she announced that the measured area is almost half the size from the last measurement. She said she doesn't expect it is that way on all the tumors but at least we know its working and the side effects are tolerable, so we can continue. Great news!!! Naomi and I contained ourselves until we got to the parking garage then we both yelled our happy cheering and did a happy dance. By the time I got home my cheeks were aching because of the smiling I did on the 3 hour drive home.
Well, for the most part I just write about all my therapies and there is much more life being lived besides that. When I am in California I am taking walks in the parks with mom and her pups, lots of shopping, beach combing, lunches with friends and family and of course every Friday Mexican Train game with mom and the gang. Mom and I have so much fun together. At Christmas we spend the week setting up her entire house with mini Christmas villages and decorations to the hilt. She still has all the Christmas tree decorations we had when we were young so it is a walk down memory lane when we decorate the giant Christmas tree. When I'm at home I am still working for the school district and loving it and the people I work with. I do have my therapies twice a week and there is usually a friend that goes with me for chat time. Twice a month I go out of town, once for the wound doctor and once for the oncologist at SCCA. I have Naomi and or Janet who always go with me for quality girlfriend time. Last month Janet and I went to the wound doctor and then continued going east to Leavenworth a quaint German town in the mountains. The next morning at breakfast we sat outside enjoying the mountain view as a cut little old man dressed in German shorts and suspenders and a little hat came out on the ledge and blew a 12 foot horn. He played a couple songs, it was the cutest thing. We walked the streets of the decorated town until our legs were aching then sat in the restaurant eating and drinking till our legs were ready to go again. When we got home I was surprised to find that John and Rylan had installed new granite counter tops in the kitchen. How they did that so fast and without me knowing is still a mystery to me. It was the nicest surprise. I enjoy tea time at the Renaissance, a nice little spot overlooking the ocean with a view of Mt. Baker in the distance and the beautiful Canadian mountain range to the left. They specialize in exotic coffees, teas, local cheeses and wine with yummy organic slaws and a crazy variety of grilled cheese sandwiches. I love hanging out their with my friends. Zoe, my grand daughter, is the best cuddlier ever and comes over often to cheer me up and everyone else whose around. lately she always asks me to turn on the computer so we can watch the funny video of "What does the Fox say!!!" We are going to learn the dance together. I walk down to Country Aire (natural food store and restaurant) often to get an organic fresh squeezed juice and/or a cup of homemade soup. I always come home with something yummy and good for me from their grocery store. Melanie and I went there a few weeks ago and she went crazy filling up the basket with hemp products (high in protein) and Kombucha and yummy protein bars. We even got a foot long hemp heart macadamia nut dark chocolate bar. It was so yummy. She said she wanted to make sure I was getting good nutrition while I was getting the chemo. All my friends are always looking out for me, getting me to all my appointments, making sure I have good nutrition and just being there for me any time of the day or night. We take walks, go for bike rides, lunches, shopping or just hang out with me when I feel like just sitting around the house or going for a drive up the mountain roads or around the lakes. John makes sure I am as comfortable and happy as he can make me. I know his heart is breaking for me and he feels so out of control, he just wants to fix me like that's his job, but he can't and that makes him feel helpless. He sometimes goes for a drive to clear his mind, then comes home and bends over backwards to help me and keep me smiling. I have the best kids ever too, anything I ask of them and its done. I love just hanging out with them and listening to all the happenings in their lives or watching a movie or cooking something in the kitchen together, I have pushed exercise and good nutrition on them their whole life and they are now making sure I am doing it for myself. A couple nights a week when I crawl into bed and turn on a previously taped show usually the Waltons, John is there waiting with a bowl of ice cream and one spoon. He lets me sit up with the covers pulled all the way up to my neck so I'm warm and cozy and he takes turns spooning ice cream into both of our mouths. What a nice way to end the day. Life is good and I am a blessed woman!! Cancer does not rule my life as I have determined to live as a well woman and enjoy all that I have been blessed with and because you have chosen to pray for me, God has responded and I have been able to do just that. Thank you!!
DECEMBER 2013
New experience this month....Vertigo...Woke up Thursday morning and was feeling a little light headed but got in the shower and continued getting ready for work. About an hour into work I started feeling very dizzy and it caused me to vomit. With my medical history in mind Chuck (my boss) wasn't taking any chances and called 911 and off to the emergency I go. The doctor on duty was familiar with my case because my son in law Joe is a nurse in the emergency room. She quickly had me down getting a brain scan which thankfully came back normal. She determined it was vertigo gave me meds and sent me home. Janet drove me as Sierra went to fill my prescription. I stayed home and rested but was ready for work on Monday. I had another successful visit with the wound doctor. The wound is continuing to heal and the pain is less. The following week I visited with Dr. Salazar at SCCA and once again looking to see the expression on her face to see if it's going well. She was satisfied with what she saw. She said the healing wound says a lot because the cancer will cause it not to heal and seeing the amount of healing that is taking place is a good sign that the cancer is stabilizing. I was happy to hear that because the tumors are looking their worse and from past experience that is not good. She said that this treatment is different in that it irritates the fast growing cells and that could sometimes cause the tumors to get inflamed and appear as though they are getting worse. Good to know but it still freaks me out to look at them. Walk by Faith not by sight came to mind and so I will rest in that. Next month they will do the needed scans to compare the sites. Please be in prayer for me that all the tumors will have shrunk in size and remission is in my near future.
Christmas was Fabulous!!!! It was the first time in four years that John and I have celebrated with all our children. Debbie, Tony, (Joe's mom and brother) and friends Janet, Demetrius, Mesky and Adam also joined us. Sierra, Joe and Zoe were the perfect hosts. They bought a home this year and wanted to have Christmas in their new home. We had crepes with all the breakfast fixings and Zoe passed out all the presents which we gleefully opened. Zoe got the movie Miracle on 34th Street so we settle in and watched it. Dinner was a yummy Christmas present from my mommy, Honey Baked Ham with all the holiday fixings including prime rib!!! Everything just had to be warmed up, except for the prime rib which Joe slow smoke to perfection. Peace, Joy, Love and Hope is what Christmas has to offer and that is just what we all got to experience.
I await the new year with hope in my heart that it will bring complete healing from the top of my head to the souls of my feet! I pray for a blessed New Year for all of you and thank you for praying for me throughout 2013.
JANUARY 2014
Well I had all the test run to see if after 3 months the new treatment plan is working. We found that the tumors had grown and there is evidence of new tumors. One of the great things so far is that through all this it has not spread to any of the organs. This time however it did reveal a couple spots on the lungs and liver and a tiny spot on the right side of the brain. This changes how we can treat this. There is a tumor that is causing some pain so we are going to address this first, which means traveling to California once again. I will be leaving February 9th and have an appointment with Dr. Syed on the 10th. There are options of Hyperthermia, Brachey radiation, Hyperbaric chamber (I'm sure I miss-spelled all of those) and they are all in the same hospital which makes it very convenient. Since there is evidence in the organs I do need to be on chemo. When they did a chemo sensitivity test on the tumor that was removed it showed it to be sensitive to 5-FU and the oral chemo to that is called Xeloda, so they started me on that right away. Dr. Kummet said he has quite a few clients on it that have liver and lung spots and they are responding very well. So please get your prayer partners in hand and start up the powerful prayers that have gotten me through to this point!
FEBRUARY 2014
Well I'm at mom's house now and we went to my doctor appointment on Monday the 10th, it was so nice to see Dr. Syed again and as usual he was getting everyone together to start my treatments. He is concerned of the many tumors and said they have to be treated differently because of the placement of them so he will be working on a treatment plan for those. The ones he does know what to do with he immediately started working on and said Wednesday I would come in at 8am to start treatment on the lower chest tumors with radiation and hyperthermia and the following Wednesday I would go in for surgery to get the tube implants for brachey radiation and I would begin that treatment the same day on the back tumor, upper chest and neck. The problem for me will be laying on the table for an hour, as the back tumor is effecting the muscle and nerves and causing a lot of pain in my back and I can't stay in any position for any length of time. It keeps me up all night and I am getting very weary and dealing with pain all day and night is not fun so I really hope the brachey works fast. Next Wednesday seems like forever right now. He said he will be looking into radiation on the entire brain since this is the second tumor on the brain and there may be some others that don't show up on the scan yet. We are hoping the Chemo I am on will be working on the lungs and liver. Much prayer needed for my sanity, pain and attitude and that the doctors will come up with the perfect treatment plan to rid my entire body of this yuck. Another birthday will come and go on the 26th and I will have ONO and Scallops Parmesan my most favorite Shushi at Mahe's Restaurant.
MARCH 2014
This month has been a whirlwind. My Birthday was fun and I did get my yummy Shushi!! But the most incredible thing to happen was I have another Ginger grand daughter, Keilawni May Frazier born 3/21 at 6:36am 7lbs 2oz 20inches of sweet, gorgeousness cuddles and knowing that is what I have to look forward to helps me to stay in the right frame of mind in getting this good and done.
Brachey radiation was done on my side and partial back with 8 tubes and my neck with 7 tubes. I had 10 treatments my first on the day of radiation then 2 a day for the next week ending with 1 on the last Wednesday. It was very successful.
They decided on using the CyberKnife radiation to pinpoint the tumor and rid it with minimal to no effect to the other brain cells. I went in to get fitted with a mask that would keep my head completely still while they treated the 2 areas. They use a medium gage mesh plastic sheet 2ft X 1ft and warm it up in a large pan of water until it is pliable, then they lay me on my back on a table and stretch the plastic sheet over my face and strap it down till if forms my profile and hardens.
4 treatments on the brain, and each session is aprox 45 min to and hour. I certainly don't recommend this for the claustrophobic. I am not, but, the entire time I was strapped down I wanted to rip that mask off and smash it against the wall. LOL So glad there were only 4 treatments.
The day after my last treatment they had me right back into radiation treatment on the upper right chest and partial lower right neck.
APRIL 2014
Radiation five days a week at 9am it takes about a 20-30 minutes then they put me in Hypethermia treatment for an hour right after radiation on Monday, Wednesday and Friday. On Monday after Hypethermia I have Chemotherapy for about an hour and a half and on Wednesday after Hyperthermia I have a vita C infusion which takes 2 hours. Weekends I get to rest from it all and get ready to start up again on Monday. I have been experiencing shortness of breath for about a month and 1/2 and it got pretty bad while at Radiation so the doctor admitted me into the hospital. That was Wednesday 16th. They started running test after test for the rest of the day into the evening and the next morning they started up again at 7am.
All the tests came back good accept for the CT scan on the lungs. It showed suspicious shadows that were not allowing my lungs to take in enough oxygen to sustain me. I couldn't even climb a flight of stair without having to sit and catch my breath for 10 mins afterwards. They were suppose to have a specialist come in the next day so I was kept over night again. The lung specialist never came in the next day. But the nurse worked all day switching around my pain meds trying to get it under control with a strict written schedule so I can keep on top of it and hopefully experience less or no pain. That would make me very very happy. Then if they can get the breathing regulated I can get back to my treatments. My oncologist came in and said after looking everything over he was very concerned about the lungs as it may be cancer related so he may have to get me on a new more aggressive chemo to get my breathing under control if that is the case. They have to still get the specialist in here. I am on oxygen all day long now and still can't walk across the room without having to sit down for 5-10 mins to re cooperate.
I trust you Lord and I know that no one loves me like You do, so I want to know Your plan and ask that You show me how I can be totally involved because that gives me a cheerful heart and You say in Proverbs 17:22 A cheerful heart is good medicine, but a downcast spirit dries up the bones.
MORE APRIL
I ended up in the hospital for 11 days. Hospital food... not much good you could say about that except if you want to lose weight, and I did 12 pounds, ouch, I needed to be gaining weight so mom has been busy making yummy fatty foods to help me out. While there they found 3 things to address: #1. Slight lung infection, which they pumped me up with antibiotics to fix and it worked but didn't fix it completely because of problem #2. Slight damage due to excessive radiation, which they pumped me up with steroids help out that situation. Radiation was needed to help combat problem #3 cancer in surrounding area. They starting me on a new chemo in hopes it will respond quickly to. Also they addressed the pain issue I was having. I can certainly see how people in pain get addicted to pain meds. They have this one called Dilaudid that they give in the IV and it is instant relief followed by a warm good feeling. They kept me mostly on that as they addressed all the other issues then the last 2 days arranged a timed mixture of Oxycotin and Oxycodone oral medication so I could do it myself at home, so far so good and what a relief, the pain was hard for me to deal with on a daily bases. They started up the new chemo so be praying it is stronger then the cancer. I am still on oxygen about 75% of the day and part of it is because it is real good for cell rejuvenation and other healing properties, but it is still necessary. They are hoping to get me into hyperbarics soon. It is still one day at a time and I am missing home sweet home. My incredible daughter and son in law has funded a trip for 5 to come for a visit and and in 2 days I will be hugging Sierra, Joe, Zoe, John and Mariah. I am the most excited I have been in months,
Thank you
God... What can I say ... Your the bomb!!
John you are the man of my dreams. We have been though the unimaginable and when I look into your baby blues my heart still melts. Thank you for your love that held me up to face each day with a new hope.
Sierra, Joe, Ross, Rylan, Mariah, Zoe you have been a great emotional and caring support to me and I love each of you in the biggest way I know how. I am so blessed to have you as my family.
Naomi and Janet you two have been my stronghold, your support and love has carried me through so much. I could not of done any of this without you by my side. We've traveled miles and miles with tears and smiles. When I grow up I want to be just like you.
Sharon, Marsha, Ed, Sierra, Naomi, Janet, Karol, Jan, John, Laurie, Jim, Bertha, Annie, Wade, Hillcrest Church Family & Super Cool Friends, for the yummy Spaghetti Luau fund raiser. I know much appreciated love, time, and energy went into planning this to make it happen. You are all amazing. It was an awesome good time!!!!
Hillary, Marianna, Nancy, Ann, Colleen and Stevens Middle School staff for coming together and funding my home coming for the new year I was happy to be here for the month of January and enjoyed spending time with my family and friends before having to return in February to run all the necessary tests. Evelyn, Jan, Debbie, Paula and Kathy for sharing sick leave hours so I can do all this and just concentrate on healing with out worrying about my finances. Stevens Staff & Students for the fundraiser baskets. Soooooo thoughtful of you!
Rachael & staff and the leadership class at the High School. I am so excited to see what I know will be the best talent show ever! But what I am most impressed at are your incredible hearts. I know putting on this fund raiser event takes much work and I am awed by your leadership skills and the selfless attitude it takes to make this happen.
Mary, Claire, Walter, Sally, Lily, Maggie, Karen, Chuck, Ariel for listening to God all the way in Oklahoma and making sure I had the naturalistic medicines that my insurance doesn't cover.
John & Janna, Sandy & Clayton, Janette the Kangen water did all we hoped it would do. And I love building new friendships.
Pastor Jeremy thanks for keeping our vehicles in excellent working order. I love hanging out talking about all the ways our Daddy has blessed us through our crazy life. He is so creative isn't He!
Joey can you believe those cards sold for so much?!?! How cool is that!! Well its very cool, but not as cool as you!!!
I love you man!!! This was so unexpected and you are amazing! Thanks for doing the ebay selling son!
Robert, Melanie and the Domino's Pizza gang, you guys are amazing, thank you so much for caring so much about my needs and pulling together to support. And Melanie I am stronger me because of all the nutrition you stuffed me with. Thank you my sweet friend.
Anonymous givers that gifted to me at the most remarkable financial perfect timings ever. You are incredible. I've been saving hugs for you, Big ones!!!!
Emma and Janet you did a fabulous job putting this website together. Thanks for helping me share my story.
Mom & Bob, I could not have gone through those therapies or any of this without you. Thank you for letting me be your little girl again and creating an atmosphere that allowed me to stay strong and heal. I love you so much mommy you are so strong and full of encouragement for me. I imagined how it would feel to be in your shoes going through this with your daughter. I know I can deal pretty well with things that have to do with me, but my emotional state changes drastically when I have to deal with the concerns of my children. I know there were many nights you lay in bed crying and when day time came you were up early getting ready to make my day the best it could be. I am blessed to have your unconditional love. I wish everyone had a mom like you to go through all this with...You should make a business doing this...LOL...Lia told me. Melia you always keep me laughing and that is the best medicine.
Port Angeles residents. Living in this small town and watching you all rally together to make sure one of your own didn't fall through the cracks has been one of the most incredible and humbling experiences I have ever had. I promise to pay it forward with the longer life you all have helped me to achieve.
I know there are loved ones I haven't remembered yet (chemo brain's fault) I will add you in as you come to mind.
So much more I could say about my fabulous friends & family, you know how much I love you and appreciate all you have done.
January 2008
I found the perfect pocket calendar minus one thing; had to fill out all the dates. Then I remembered I had a sake & sushi date with Janet and figured I could fill in all the days while we visited. So there I was chopstix in one hand and a pen in the other mindlessly filling out the calendar. I was turning the page to June when this feeling swept over me. I sensed God was telling me to stop. I put down the pen thinking it was just a funny feeling and I would resume after my next bite of sushi. I picked up my pen and once again "STOP" came to mind. Well... if God doesn't want me to finish I better not! I tucked the calendar away in my purse. I called Janet later laughing about it but somewhat curious at the same time. She said sometimes we just get weirded out for no particular reason and not to worry. She reminded me of this incident in June when I learned of the journey I was about to take.
April 2008
Went with my mammogram mate, Janet, for our annual screening, and this time I noticed a change in the demeanor of the technician after she checked to make sure she got all the images. I was soon called back for a biopsy.
Later that April—boob's squashed like pancakes, even more so then the mammogram if that's possible, they began the biopsy. They decided 5 stabs otta do it. All computerized and precisely done, in went the knife for the first one... ouch...that sucks! Then the second and third. As they went in for the forth a stream of blood shot up, they hit an artery. The tech checked out what he had and decided there was enough tissue to get the info needed, so the other two samples weren't taken. They all tested positive for cancer. It looked non-aggressive and a simple lumpectomy and a little radiation should do the job. Or will it?
I soon had appointments with an oncologist, radiologist, and a surgeon to go over all the details. I was happy to have Naomi there with me as support and a second set of ears to collect all the overwhelming information given.
May 2008
Went to Bremerton for an MRI. There was a table I had to lie on with two holes for each ta-ta! “One size fits all”, said the (male) technician. I aimed for the holes. As I laid there I suddenly felt like my breasts were transformed into udders in a machine and ready for the milking. I was thinking everyone could see them awkwardly hanging through the holes and felt a bit embarrassed. What a sight for the technician and Janet, so to make lite of it all I just started to Moooo! They let Janet sit in the MRI room the whole time and I watched her through angled mirrors as she signaled how much time was left during each part of the process.
The nice Filipino tech showed us immediately after the MRI where the cancer was and what it looked like. We all agreed that it looked like an easy removal.
May 2008
Ann, a school district psychologist and breast cancer survivor, saw me walk by her office on the way to my classroom, she popped her head out and invited me in to shared her story of the wonderful experience she had with the Seattle Cancer Care Alliance (SCCA). She encouraged me strongly to get my cancer treatment in Seattle or at least go there for a second opinion. So I did.
Soon I had an appointment to meet with an oncologist, a surgeon, and a radiologist at SCCA to discuss their take on my cancer treatment. They were very happy that it was caught early and positive that it would be an easy removal with only relatively minor surgery and radiation. Chemo was not included as part of the therapy at that time because the biopsy report came back non aggressive and as far as they could see I didn't need it. Once again Naomi was there for support. On the way home we talked about how God was in control and I needed to trust His lead.
June 2008
First surgery. Removal of the lump was successful. After further examination of it they found what would of been found back in April during the biopsy, had they been able to retrieve all the tissue they wanted to. The cancer was aggressive.
On getting the results, Dr. Anderson, the surgeon, called me on his way to a conference in Brazil and told me there was a possibility that the cancer had spread to the lymph nodes. He assured me that the possibility was slight but he needed to be sure.
Later in June 2008
Second surgery, I had to have the tumor area tagged so I traveled from one hospital to another with a wire and slip hanging from my flesh like USDA approved beef. I then go in and have radioactive dye injected to make me glow a pathway between the sentinel nodes and the tumor area, then the doc knows exactly which nodes to remove, One of the advantages of doing my surgeries in Seattle is they are able to examine the removed tissue to see if it is malignant while I am still on the table and under anesthesia, then they can go in and remove what they need to without doing a second surgery. If the nodes test positive they would remove a layer of tissue around them for extra measure, but it would also mean chemotherapy was a definite. I then became very aware of my vanity. I know the chemo would suck but I was really more concerned about how funny I would look bald. God says "a woman's hair is her crowning glory". John was first attracted to me because he liked my long chocolate brown hair that flowed down to my hips and that meant a lot to me.
Dr. Anderson found three out of five lymph nodes were malignant and fifteen more were removed which were all fine. While I was in recovery, he went out and told Janet what was going on. She then called John and my mom who could spread the word to everyone else.
They finally let Janet back to the recovery room. She stood bedside me with eyes concerned but a smile on her face she reached out to hold my hand and tell me the news, before she could I mouthed the word “chemo” to her with tears in my eyes knowing that meant my fears would come to past. Poison, sickness and worse of all baldness. Little did I know that would be the least of what was in store for me.
Mariah was so helpful to me as I recovered, measuring the fluids and marking them down and bringing me breakfast in bed. She never left the house until she knew I had everything I needed. Thank you sweetheart.
July 2008
After finding out that I was going to need chemo, Janet reminded me of the perfect pocket calendar I tried to fill out between sake and sushi back in January. This became a source of comfort for me through the whole ordeal because I now knew without a doubt that back in January I didn't need to worry about my future plans because God was letting me know that He was already going before me to lay out the path He knew I needed to be on to ensure my healing, well being and strengthen my relationship with the one who knit me in my mothers womb. Jeremiah 29:11 I know the plans I have for you declares the Lord, plans to prosper you and not to harm you plans to give you hope and a future.
I would have a month of healing before I started chemotherapy.
September 2008
The SCCA docs wrote up the chemo protocol for me and sent it to the Sequim Cancer Center which was 20 minutes away from my home. I hoped to do my treatments locally instead of going to Seattle every week. At this point, I was introduced to Dr. Kummit, oncologist and wonderful man and the friendly staff of nurses. I went every Thursday from 2:30 to 5:30pm.
My chemo lasted for six long months. I worked at the Port Angeles School District in the scholastic and life skills class with medically fragile middle-school students. I felt I needed to make a goal so I could get up every morning face the day and make it through to the next, so I decided not to miss a single day of work that year, and I didn’t. In fact, I was the only person in our working group not to miss a day! I’d get up, throw up if I had to, take a shower, dress and get to work. I'd pour myself into loving on those sweet kids and that would get my mind off of my yuck. I would stop at the store on the way home to get something for dinner, cook it and collapse for the rest of the evening. John took care of everything else.
My Hero!!!
I’d go through the whole week until Thursday, then I'd leave straight from work, drive to Sequim, get infused in the Sequim Cancer Center for 3 ½ to 4 hours. I remember the first infusion. Nurse Kasey came in and asks me my name and birth date to make sure the chemo cocktail is mine. Earlier that month I had a power port surgically inserted upper left chest. Kasey accesses it and draws enough blood to run a series of tests to make sure I am okay to receive chemo. Everything looks good and in she comes in with a bag of chemo. She hooks it up to a machine that will calculate exact timing of the infusion, then she hooks it up to my port and turns it on. I watch the chemo move slowly through the tube closer and closer to my vein and it occurs to me what it is—a form of mustard gas poison that’s designed to destroy my body. It’s a good thing Naomi was there to help me with the mix of emotions I had—fear, happiness, realizing the necessity yet being horrified about what was about to enter into my veins. I held my breath, as if that was going to help.
After that first unsettling time, I got used to the idea. Friends would often come with me or I brought knitting to work on. We had a great time laughing and joking. We often laughed about what the other chemo patients must be thinking with all the laughter in our part of the facility. The entire staff was amazing.
Saturday morning taking a shower when I notice I am ankle deep in water, I turn to look at the drain and saw that it is clogged with handfuls of my hair. I cried through the rest of my shower. Called my mom, still crying, she calmly said to me, "that's okay honey it's doing what its suppose to do, now we know the chemo is working".
Well my wig hadn't arrived and I promised the kids they could shave my head when it started falling out. Sierra brought over her electric razor and Rylan, Zoe and Sierra began carving out a Mohawk on my head. Mariah didn't do as well seeing the first tangible evidence of her mommy having cancer and went to her bedroom unsure of what to do with all the emotions. Sierra took lotsa fun pictures and when it came time to cut the liberty spikes off Mariah came out and snipped off a few. Monday morning and no wig. I am not a hat person and now I had to go out in public bald with a hat I was horrified. By the end of the week my wig arrived. But now, as I tried it on, I felt God impress on me how much more usable in sharing my story I could be if I were obviously bald. And boy was He right, I had people coming up to me all the time asking questions or concerned about a loved one and would ask me how they could help them. Some even scared about loosing their own hair. A whole new opportunity to share that would of been missed just by putting on a wig.
I am very grateful to the people who offered to spend that time with me, to sit and visit and get my mind off what was going on and all the prayer warriors and dinner deliverers, Sierra, Mariah, Naomi, Janet, Karol, Grandpa Mike, Sharon, Melanie, Robert, Ruth, Dawn, Karen, Mary, Ed, Marsha, My Church family at Hillcrest, Mom, Bob, Lia, Michelle, dad, Jenny, cousins, aunties, uncles. So many more, I don't like naming names because with my chemo brain I will forget someone, without you I could not of made it though as well as I did. I’m grateful to my husband John for being such a support, working so hard and holding down the home front while I went through this first part of my cancer journey.
April 2009
Chemo stopped and radiation started 6 weeks Monday through Friday. Sunburn wasn't so bad, I had good skin type. I used lots of aloe vera 3 or more times a day. It makes you feel tired but tolerable. I just drove to Sequim everyday after work. It only took 30 min from the time I walked in to the time I left.
May 2009
I was finally done with all this (or so I thought)!
June 2009
All seemed fine, I felt better than ever that fall as Hillary and I had started the Candida diet and what I thought was my new normal post chemo wasn't. All the little physical annoyances I thought I had to live with due to the affects of chemo were gone and I was doing really well. I was off all my medications except for tamoxifin. I even started to loose the weight that had held on to me from the toxins that invaded my body to save my life. I told Dr. Kummet that I was looking forward to at least loosing weight through the process but I ended up gaining. He said God forbid that you will ever have to go through this again Camille, but if you do I won't give you the anti nausea meds and you can loose all the weight you want. He's a funny guy. I doubt I will take him up on that.
Summer 2010
I started checking in to the variety of breast reconstructions offered. The simplest was a tissue transplant from the tummy to the breast. Since it was just a small indent it would be an easy surgery.
December 2010
The Doctor felt confident this surgery was the best option for me. He said the only concern was that my breast had been radiated which makes the skin less stretchy and could cause severe wrinkling and or bad stretch marks. So #1 mammogram to double check it was clear of cancer then a little liposuction off my stomach to fill in the breast. Don’t we all wish we could do that?
March 2011
The breast started wrinkling so I went in for the doctors to take a look. They did #2 mammogram and all was clear so they said I probably had to have another surgery. There was a lump in the breast but they figured it was due to the tissue transplant so no worries. I asked if I could do the surgery in the summer since I have summers off working for the school district. They felt that would be fine.
May/June 2011
The breast continued wrinkling, and I was looking forward to getting in for surgery. In June I had #3 mammogram which came back clear of cancer. I then met with the plastic surgeon and upon looking at the breast he said he was concerned and wanted to have an MRI done before he did anything. The weird thing was I never felt there was anything wrong I knew I didn't have cancer all the other tests had come back clear and I was confident the MRI would too. But that wasn't what happened, The test came back and so did the cancer, and this time with a vengeance and it was in both breast. Sigh....
When I got the call I was at home planning my summer trip to California. I asked the doctor if I needed to cancel and he said there was a bit of pre-surgery planning to do and I should go on my trip and relax, but be ready for an aggressive double mastectomy when I got back.
July 2011
Before they let me leave on my road trip to California they decided to run me through a series of tests. PET scan, CT scan and Brain scan. They all came back clear so I packed my little RV and hit the road with Sierra, Zoe, Mariah and Kody.
We were all having a fun and eventful time at mom's as usual. Sierra was painting a beautiful tropical mural on the wall in mom & Bob's bedroom, Mariah and Kody spent a lot of time at the beach surfing, mom and I spent most of our time cuddling, swimming and playing with Zoe. Mom said she wanted to treat me to a facial with her friend Gigi. While there she shared with me her mom's experience with breast cancer and talk to me about a friend of hers who sold these mushrooms that helped shrink tumors. I was interested but knowing it didn't pertain to me, as I was scheduled for a double mastectomy, I just politely listened. She was sure I needed to have some of these mushrooms and insisted I start taking them. Okay, I have heard of the medicinal uses of mushrooms so it could only help. Besides a bottle of mushroom capsules and a box of mushroom tea won't cut into my vacation savings much... $30 to $35 tops. Later that week I got a call that my mushrooms were in. I grabbed a 50 and drove to the spa. When the lady gave me the invoice it read $88. yikes... I had to leave and get more money. When I returned Carol explained all the benefits of the mushrooms. I only half way listened as I was still in shock at paying $88 for mushrooms. As we talked Gigi came out from doing a facial for a lady named Courtney, when she looked over and saw me she grabbed Courtney's hand and quickly came over to me and said "Camille, it is no accident that you are here, this is a divine appointment". She asked Courtney to sit with me a while and tell me her mothers breast cancer story. As she talked to me she wrote down notes for me of all the therapies she had researched and the doctors she had interviewed. She spoke mostly of tumor shrinkage and knowing it didn't pertain to me due to my upcoming mastectomy, I found my self still dwelling on spending all that money on mushrooms, little did I know, this was a divine appointment and God would bring me back to this day and use it to bring me hope.
August 2011
Had a powwow with the oncology doctors in Seattle at the SCCA, plus assorted radiologists and interns. So thankful to have John, Naomi and Janet there. As I went into the examination room I watched each doctors faces as they came over to take a look one by one. They were way too serious and the surgeon even gave me the boo-boo lip. We went into the conference room and waited. The oncologist and radiologist came in with grim looks on their faces. She told me she would start me on a chemo that was physically tolerable so I could continue my daily activities, but she didn't expect it to work. The surgeon came in next and told me the tumor was inoperable. Great. Thanks, Doctor. We left in a cloud and I thought back to the trip and how I was so sad that I would be getting a double mastectomy and now here I was driving home just wishing that I could get it done.
The first most horrible night of my life. How could this happen I was healthy and feeling better then ever. It was breast cancer, people hardly die of breast cancer these days. This can't be happening! I have Ross, Rylan and Mariah to watch walk down the isle and more grandchildren to meet. I have Zoe to cuddle and need to be there for Sierra & Joe. I have a husband whom I promised to grow old with. Please God make this all just a bad dream and wake me up!
I had the whole weekend to go through before I could call another doctor to tell me they were mistaken. Monday arrived and I was on the phone calling Dr. Kummet, he got me in as soon as possible. Melanie and Janet went with me and we met with Dr. Kummet and another retired doc that fills in on occasion, he was on the board of directors at the SCCA, they said they couldn't give me a different diagnosis but I was healthy and young and they felt I could handle a stronger chemo, they came up with a good mixture and started me on it as soon as they put in a new port. I was happy they were bringing the big guns out to help me battle.
I remembered the mushrooms I tucked away in my suitcase along with the notes Courtney wrote out for me, I found them and swallowed a couple caps and made myself a cup of mushroom tea. After steeping I took the tea bag out of the hot water and placed it on my breast hoping it would absorb into the tumor and help shrink it. Desperation was sinking in and that $88. seemed like pennies now. I called mom and told her to call Gigi and get Courtney's number. I got a call that night from her and she went over all the notes of information she gave me. This time I listened very closely because I knew once again God had gone before me and was laying out the path I needed to be on. She told me about the Cancer Treatment Centers of America so I decided to start there. Turns out that fateful day in the summer was a divine appointment!
Karen, a friend in Oklahoma, called to encourage me. Before she hung up she said one thing she wanted me to remember, be still and know that He is God. That night as I lay awake I started praying. Okay, how do I be still and know? Is this what I am doing now? I'm still and I know.... Is it laying here praying? Or is it just laying here? Soon I have a sense of someone speaking to my heart and saying, "shut up" so I lay there quietly....then... "And know that I am God". Okay, how do I know that You are God? Well, You set the stars in the sky and You know them by name.... You cause the sun to rise and fall... You have every hair on my head counted... Wait, that means you know every cell in my body too, because you knit me in my mothers womb. Psalm 139 tells me that, I know because it was the first Psalm I ever memorized. I'll recite it now.... I laid there thinking it over until I came to a verse that says, "All the days ordained for me were written in Your book, before one of them ever came to be. Wait a minute... That means the doctors can't put me on palliative care, my days are ordained by You and no one can change that day but You. So the only days I need to worry about are all the ones in between, right? Right!
In my Sunday school at church we take turns presenting the lesson and it was my turn. The study was about healing (weird) A group of friends had carried their paraplegic friend to be healed by Jesus but when they arrived there was a crowed. So they carried him up to the roof top, made a hole and lower him down. Jesus, seeing how faithful the mans friends were said to him, "Because of their faith you will be healed". Hmmm...I think I remember other places where Jesus said this, so I started looking them up there were many stories and I read them all. Jesus healing the sick and raising the dead because of the faith of their family and friends. Well what does this mean to me Lord? That night as I once again lay awake trying to be still and know, it came to me. All the days of their lives had been ordained too but because of the faith of their friends and family God altered their day. Wow... this made a world of difference to me, I had so many people praying for me, all over the world even, and they were all expecting a miracle! Their prayers became the most important thing to my life, for now I knew because of their faith, I would be healed.
September 2011
After a week of highs and lows, I started seeking alternative therapies.
I was involved with a Bible study at Naomi's house, we were reading through the Bible in a year together and upon hearing of my diagnosis John and Janna offered alkaline water from their Kangen water filtering system. Many benefits for cancer patients. Staying hydrated with it, Hillary and I were looking up alternative therapies and cancer treatment centers whenever we had the chance. We learned more about breast cancer then we ever wanted to. I came to the conclusion that my treatment needed to be a mixture to Western and Eastern medicine.
Cancer Treatment Centers of America (CTCA) offers alternative therapies together with Western traditional ones like chemo. After calling I found I would need to travel cross country for treatment, I was willing but my insurance was not. I had other insurance options and started looking into them. I was surprised to see a road block so quickly as I really felt that was where God was leading me. Was I mistaken, maybe I was suppose to piece together what they had to offer so I could stay local. I went to John and Janna's to get water and we talked about my dilemma. John said will lets pray, when we were done he said you know this verse keeps coming to mind, Proverbs 17:24 'a discerning person keeps wisdom in view, but a fool's eyes wander to the ends of the earth' not sure what it means for you though. Janna grabbed another translation, she plopped the book down and opened it, "oh look I opened it up right to the verse" she read it and it was the same, so she got another translation, and once again opened it up to the exact page the verse was on, but no new insight. Well one more translation and (weird) one more time at opening it up to the exact page. Okay this is when it stops being a coincidence. I still didn't know how it pertains to me but I knew I better write it down and tuck it into my purse. John gave me the name of a friend of his who is a Naturalistic doctor here in town, I called him the next day, very nice guy and very willing to help in any way and he gave me the name and number of a friend of his in Renton, Dr Gignac, who is a Naturalistic Oncologist and wanted me to see him so he could confer with him about my treatment. I called and made an appointment, he was so booked up that they couldn't get me in till end of October. They said they would call me back to let me know of my insurance coverage. Not sure what happen in between then and later, but I received a call 2 hours later and they said it was CTCA calling with info on my insurance. Wait..CTCA... are we back there again? Am I going cross country now? They said I was covered and the doctor rearranged his schedule and wanted to see me the next day. What doctor and where was I going? Dr. Gignac in Renton. But I thought this was the CTCA? Yes it is.... Dr. Gignac works for the CTCA. I knew God said I was going there but when I called they said I would be going to Chicago or Oklahoma. I told the receptionist and she said the other facilities were larger and they usually send patients to them because they have more to offer. Well all I knew was God had answered my prayers and I was going to the Cancer Treatment Centers of America. Yippee!!! I reached into my purse to get my keys out and drive home and a slip of paper was caught on them I opened it up to see what it read. Proverbs 17:24... Oh now I get it.
Naomi and Janet went over with me for my appointment and I will never forget what Dr. Gignac said to us, "I'm not going to let this cancer intimidate me!" I had been waiting for sooo long to hear someone say that!! I knew I was at the right place. We went to dinner afterwards and then had a great drive home, much different then the last trip home from Seattle. I asked Janet and Naomi over and over again to tell me what he said about the cancer and over and over again one of them would say "I'm not going to let this cancer intimidate me! I just couldn't get enough of hearing that! The following week Naomi and I drove to Renton again to met Dr. Chin the oncologist and he was as positive as his colleague. But still I started thinking of the expenses and wondered if I could do it. Naomi spoke up and said If you don't just make the choice to do this what has all your praying and trusting God been about? Make the commitment and let God take care of the rest. Okay.... here it goes.... Make the appointment. Dr. Chen wanted to run a few tests that day so we did that and smiled all the way home.
With the encouragement of Naomi and Janet and an army of friends who were willing to drive me to Renton once a week, I started my vitamin C infusions along with chemotherapy and an assortment other alternative therapies. Janet made phone calls and brought a calendar to church and everyone happily filled it in through the month of January. I have the best friends ever! Thank you my faithful Chemo drivers.
October 2011
I just got my hair to the point that I could put it up in a pony tail and now it was time again to shave it. Of course I will be sporting another Mohawk, Sierra brings over her razor once again, Zoe and Janet are there to help. When I first was diagnosed I was given a book called Chemo Kitty it was written to help young children understand the affects of chemo on their loved one. I read the book to Zoe and had no idea how much it would make an impression on her until this moment. Sierra begins shaving and Zoe becomes very concerned. What are you doing to Lala's hair mommy. Well its starting to fall out because of the chemo so we are just shaving it off so it doesn't make a mess everywhere.... You mean like Chemo kitty? Yes, just like Chemo Kitty. Grandpa comes out when we are almost half done and Zoe informs him that their cutting off my hair just like Chemo Kitty's so he doesn't have to worry.
Later that day Zoe comes over to me and takes my face in her sweet little hands and gives me a kiss and says don't worry Lala after your better all your hair will grow back just like Chemo Kitty's hair did.
I went to work at the middle school the next day with a big Mohawk and made a lot of people smile.
Dr Chen said it was time to get an MRI to see how the chemo was doing. We found out the cancer was still growing. That meant I had to change chemos. They started me up right away and sent my previous biopsies in for a chemo sensitivity test. It also charged me up to finding the next alternative therapy. Hillary, Janet and I read and read and we realized the only choice for me at this point was Brachy therapy (a radiation treatment) together with hyperthermia treatment (more or less microwaving the tumor tissue right after a Brachy treatment). We called all around and there are some that do the Brachy in Washington but none that did Hyperthermia. I brought information to CTCA for the docs there to tell me all they knew about it. They looked into the CTCA in Chicago and they did Brachy and wanted to send me there. But they didn't offer hyperthermia. The founder of both those therapies were in L.A. county I learned about them from Courtney when I was visiting mom that summer. They were 2 of the many treatments she told me about during my "divine appointment" at Gigi's. It was nice to see God going before me again. I never would of known of these treatments to even look up and study If I hadn't gone for that facial. Another source of comfort from God. Thanks for the leads.
Reality hits again and I start worrying about leaving my family and finances. How am I going to make this work? Hillary and I would have many talks about it until she finally just tells me that I have two choices, go to California or stay here and die! No... She really didn't say it like that she was a lot nicer and rational about talking me into it. I just like to say it that way because she is super sweet and loves me bunches and when she hears me say that she freaks and say "I didn't say that!!" But we both knew it was true.
Quick phone call to mommy then that Friday I hopped on a plane to my old hometown of Huntington Beach, California. Treatments were 20mins away at the Long Beach Memorial Hosp.
November-December 2011
Monday morning and ready for my appointment. Mom and I would meet Auntie Nani and Courtney there and start my first appointment with Dr. Syed. In walks this dear sweet man, bald with a big smile and an India accent, he looks just like my grandpa Benny. How cool is that for God to give me my grandpa-like doc to spear head this whole ordeal. Quick examination then a meeting in the conference room. My auntie Nani is a nurse and headed many department conferences in a variety of hospitals including the Tumor Board Meetings and right away she starts talking to Dr. S about getting my case ready for the tumor board meeting on Wednesday. She said she would do whatever she could to help. He was reluctant as it takes time to put the presentation together but with a little more persuasion from my auntie and he said he would get my case together and ready to present. I would of had to wait till next months meeting if she wouldn't of been there. She had a couple more pep talks with him out of the room. Between her and Courtney doing her doctor interview making sure all basis were covered concerning me, I was beginning to feel a little sorry for him, but thankful they were watching out for me. He told me he would do both therapies but seeing how aggressive the tumor was he could only give me a 40% to 50% chance that it would work. Well that was better then, I'm gonna do this but I don't expect it to work...right? Uncle Burt was waiting out front for us and as we walked to the car he put his arm around me and said everything is going to be okay sweetie you are a strong Filipino woman and you will beat this! I didn't feel very strong at that moment, walking under his big strong arm I just felt like little Camille again and I wanted him to kiss the owey and make it disappear. I cried like a baby all the way to the car and he cuddled me under his comforting arm and encouraged me the entire way. Surgery was scheduled for the following Tuesday. Mom wakes up early and makes sure I'm ready and off we go. They insert 21 tubes, 1 foot long and the same size around as a cocktail straw. 8 tubes through the tumor area up against the wall, 7 tubes right through the middle of the tumor and 6 tubes in the upper part of the tumor. Then they wheel me in to get a scan of the precise surrounding area of each tube and calculate how much radiation will be needed in each one. Amazing Right. Every morning after that for 12 treatments went like this. In the evening mom and I looked through cookbooks for a yummy dinner to cook the next day. Get up the next morning to be ready for a 9:00am appt. then Kanita the radiologists hooks me up to the Brachey radiation machine and steps out of the room. They watch me through the cameras set up in the room and do everything they need to do for me from the computer room. Aprox 30mins in there. Then they bring me into the Hyperthermia room. I get all set up in there and they microwave me for one hour. This opens all my blood vessels to receive the chemo and radiation and pump it into the tumor. Mom brings along her people magazine and reads it to me as I lay still, and I say that because every time I move mom says "be still honey". We leave the hospital go have lunch then to the grocery store to get the things for dinner then home to put them away. We get Lani & Leah (mom and dads little Maltese puppies) to take them for a walk. Dr. S said not to sit around because he wanted me to keep my blood circulation strongl. I didn't want to move around so much but mom made sure I did, keeping me busy knowing it was important (see mom, I knew what you were doing). Friends Friday... Mom's friends and prayer warriors meet us at the house to play Mexican Train, drink wine and eat chocolates, I sadly had to skip the wine part. These fabulous ladies became a sweet source of strength for me while I was there. I love you Diana, Kathy, Debbie, Judy, Marilyn and Mom. I was doing pretty well for the first half of the treatments and I mention to mom after seeing some of the patients sitting in the far corner just barely out of their jammies, I think they would feel better if they got up and showered and put fresh clean clothes on, I know it helps me. Famous last words.... towards the end of my treatments, exhausted, rt tumor burnt and covered with ulcers and the surrounding skin had the worse sunburn ever. Mom would wake me up... Wanna get up and take a shower sweetie... No.... I'd lay there till the last minute, step into some comfy baggy sweat pants throw on one of dads over sized sweat shirts and then on the way out,
step into my slippers. As I walked across the street to the hospital I looked down at myself... Mom, why did you let me leave the house like this...We both got a chuckle out of it, then sat in the far corner of the room with the rest of the lazy dresser. During this time I was also seeing Dr. Deo for my chemo treatments once a week and at our first appointment I asked him if he could get me Vitamin C infusions, he said he had not done them before but was willing to check it out for me. He finds convincing information on it and puts nurse Ann on the job of finding some. After much unsuccessful searching I gave Dr. Gignac a call back in Renton to get his help. He said the main lab was two towns away from me in Santa Ana and gave me all the info. Ann had it ready for me by my next infusion. In the chemo infusion room. Large rectangular room with a nurses station to the right, turn to the left and see comfy recliners all around the room against the wall, next to each one is a stand that holds the bags of your variety of chemo cocktails, in the middle of the room is a table where you can do puzzles or paperwork far side of the room is the bathroom and pharmacy, hung on the wall next to the nurses station is a big screen T.V. I Love Lucy was on that day and as they brought out my vitamin C the other two patients on either side of me were amazed. My what a big infusion bag you have... The better to kill cancer with my dear...What are they giving you, one asks, I tell them all I know about it, give them a few websites to look at, and answer any questions I could. Later, after returning to Washington, I called the office with a couple questions, Ann got on the phone and called me a trouble maker. She said they are having more and more people asking about vitamin C infusions and wanting them. And after Dr. Deo read more information and testimonies on it he couldn't say no with a clear conscience.
Hee Hee Hee my plan to get vitamin C infusions in every cancer treatment center one by one is working.
Timing was important at this point, the left tumor was growing so they kept me on chemo to slow it down while they worked on the right tumor. The plan was to finish brachy and go into surgery to remove the left tumor and take the brachy tubes out. But by the time I finished I was worn out and my blood cells were down. So no surgery, but the tubes were still coming out. Mom had a dentist appt so dad took me in. Dr. S warned me that this was going to be uncomfortable... yeah 21 times. He said he would pull out more then one at a time. One of the most wonderful nurses in the world, Jessie was there, I could write a whole chapter of all the ways she helped me, and all the strings she pulled to make everything work together as smooth as possible and all the kind words she spoke to me. She held my hand and told me to take a breath...Big yank..Ouch!!! He showed me 2 tubes. Okay only 10 more yanks to go. Another deep breath and yank.. That one hurt even worse... Then another and another each one more painful then the last. Ouch...Wait... I need to take a break... Okay, but I'm all done he says. What?!? How did that happen? Well, people always freak out if I tell them I'm going to pull them out by the hand fulls so I show them the first 2 and their usually good with that. Tricky grandpa looking doctor.
The next day was Thanksgiving and I was happy not to have a bunch of tubes hanging out of me as I enjoyed a relaxing and delicious dinner with friends and family. Thankful for a Thanksgiving I actually got to rest through. Everyone cooked and cleaned and just kept telling me to take it easy, sit down and enjoy myself. How awesome is that. Thanks Novak's & Kaiser's Mom and Bob your the best.
Monday morning I call Dr. Evans (the most awesomness breast surgeon ever) to make an appt for left side mastectomy. Receptionist says she can definitively get me in next Monday and will try for that Friday. Dr Evans surgery days are only on Mon & Fri. After I hung up was the first time I felt scared. They had been holding off the surgery trying to get the right tumor under control first but the left tumor was still growing fast and spreading into the lymph nodes. A lot could happen in a week for me at this point. I start crying to my mommy... She told me to call nurse Jessie. I pulled myself together and called. Jessie asked me if I got my surgery date yet. I start crying again. Jessie they don't realize what is going on with me and can't get me in until next Monday. It's okay Camille just relax, go take a hot shower and when Dr. Syed gets here we will take care of everything. Shower crying is the best, you don't have to wipe your tears, let the water run down your face and just let go... God I know it isn't an accident that I am here, I know you have a plan for me and can keep this cancer from spreading this week...Heck, You already have, the doctors continue to be amazed that it hasn't spread to other parts of my body. Please help me trust You in all things. 5mins after I get out of the shower Dr. Evans calls me. Camille I don't want you to worry, Dr. Syed called me and I was able to get the surgery room for tomorrow so you need to get in here today for all your pre-op stuff. Another miracle... Mom and I spent 5 hours at the hospital that day getting all my tests done before the next days surgery. Thanks mom, your a trooper. I tell Bob (honorary dad) everything that happened and he says to me,"I've never seen anyone so happy to about getting their breast removed." Wow...I hardly called them breasts anymore, I started calling them tumors, I guess to separate myself from them so I would be ready for this day. But now all of a sudden there breasts again. Early the next morning more shower crying. I have the special, before surgery soap, and as I lather up I felt the need to say good-by. Well...this is it...the last time I see you. We've been through a lot together, from a little raisin to holding my precious children in my arms as you fed them. You've done a swell job and I'm sorry this happened to you and that we have to be separated like this. I just want to say thank you for everything and farewell. Off to the hospital and off comes the tumor. They suggested I stay the night in the hospital but after 4 hours of my mom being my personal nurse, I decided she would be more comfortable taking care of me at home. Thank you Rebecca for the delicious carrot cake (my favorite) I got to eat when I got home. And my sweet Autumn walked up to the car as I was getting out and said, Why Auntie you look so thin, have you lost cancer?!?! Why yes I have!!! Recovery time... Dr. Syed comes in the examination room to see if and/or how much the therapy worked. To the unprofessional eye it looked like a mess, but when he saw it he gave me the biggest smile. Look here Camille, remember the nodules that were all over this section of the skin? They are all gone. Remember the raised lines that were here and here? They are all gone. Remember how this whole area was hard as a rock? Its much softer now!!! I am bumping you up from the 50% I told you in the beginning to a 90% that this is going to work. Dr. Syed was standing between me and my mom and when he moved to the counter to write his notes I could see my mom's face. Tears were streaming down over the biggest smile I'v ever seen...Now those are what I call Tears of Joy! We made phone call after phone call on her speaker phone car blue tooth but know one was picking up, so we left silly messages on everyone's phone.
The drainage tubes from the left side mastectomy was taking forever to finish up, but I was finally in Dr. Evans office getting them removed. She liked how everything was healing up after surgery, Then she wanted to examine the right tumor. She was thrilled to see the difference, and when she moved it she said it had much more mobility. She said she had been looking over the CD's of my mri, pet and ct scans and she can see a margin. She wanted to put a presentation together for January's tumor board meeting and suggest the removal of the tumor. This was truly a miracle, every other surgeon that examined me said I would need one to two years of chemo and radiation before they would even consider removing it. But the majority said it might not ever be able to be removed. Dr. Evans said she was hoping for February... Of 2013? I asked. No this February...2012... I couldn't believe my ears. My heart was beating so fast with glee. I turned to smile at my mom and once again, the tears of joy were welling up in her eyes. She gave Dr. Evans the biggest hug.
Doctor Evans also gave me a prescription for new silicone boobs with bras, so mom and I went to the booby store to try some on. The lady helping us was very nice and gave us plethora of brand new information. We walked out with 2 bras and a perky new set of ta-tas all covered by my insurance. She said they will cover one set a year. I wore them home. They felt so soft but firm I couldn't keep my hands off of them, mom reminded me that the people driving by don't know that they aren't real and suggested I quit playing with them until we get home. We stopped at the grocery store and I was bumping into things because my new perky ones kept getting in my peripheral vision and I kept looking down to see what it was. The other ones were 50 years old and fed 4 kids, they were at least 2 - 3 inches south of where these ones are. It was unusual to have them so close to my chin. Not that I'm complaining, I just have to get use to having young ones again.
Christmas was coming up soon and my plans to spend it with my husband and kids were falling apart as I had two more appointments the following week. These would be the first holidays I have ever missed having with my children since I became a mother. My husband lovingly said I will gladly trade in these ones to have many more in our future. We all agreed.
January 2012
I made it home to celebrate the new year with my family. Zoe spent the night, we watched movies and ate popcorn and fell asleep before midnight. The fireworks woke me up we rolled over and smiled a 'happy new year' and fell back asleep.
I am now back at work and getting chemo and vita C weekly to keep this tumor under control while my skin is healing.
My first appointment with Dr. Chen and he was so happy to see the improvement. I told him before I left that Dr. Syed told me he would be going to Chicago soon to talk about and hopefully train and set up Brachy radiation with Hyperthermia microwave in there cancer centers. He said he was surprised they were doing it so fast... What do you mean?... Well I used your case to explain the need to be updated with these therapies. Camille it is because of you that we are moving forward with this.... Wow, its all making sense to me now. I can see God's handy work in making everything fall into place perfectly to make this happen. This is what it means to look for His Glory in all things, and I have found it in many many ways.
I have been waiting for a phone call from Dr. Evans to see what the tumor board thought of her presentation.
Last Wednesday before I leave for chemo I get the call. She says she wants to go over all her concerns. She wants to have another surgeon in there, a plastic surgeon in case she has to do any skin grafting as she wants it to look the best it can, especially if she needs to take the pec muscle. OK...and...Thats it? What about your concerns on removing the tumor?
Oh Camille I'm not worried about that at all the tumor board unanimously agreed that I can safely remove it now!! See you in February. The call came January 24th. Surgery is on February 3rd. ALLELUIA!!!!!!! More to come....
February 2012
PET/CT scan scheduled. When you go in to do this it is usually done in a mobile unit because the machines are so expensive and when it's mobile they can get the most for their money. So you sit in a big comfy recliner and a nice tech injects you with a highly concentrated glucose attached with glow serum. You must then relax reclined eyes closed in a dark room so none of your muscles are working for 40 min allowing the serum to attach only to the areas that may be malignant. They lay you on a moving table which takes you in and out of a tube with lasers shooting through you detecting all the places that has uptake of serum. The percentages are assessed and the doctors determine the different reasons for serum uptake which can vary depending on each patients history. For me here were the written results:
1. Metabolically active right breast mass, consistent with known cancer.
2. Mild metabolically active left axillary lymph nodes, consistent with known metastasis.
3. Mild metabolically active left seventh rib, lefty clavicular head, concerning for bony metastasis.
4. Right middle lobe mildly metabolically active opacity, likely pneumonia. Suggest followup CT post treatment in 3 to 4 weeks for better characterization.
5. Mildly metabolically active right supraclavicular node is concerning for disease involvement.
Well that didn't sound to promising and took the wind right out of my sails.
I flew out to California the very next day and brought the disk and written results to Dr. Evans and she eased my mind saying. Notice that all the unknown are mild uptakes ranging from 20 to 30, we don't start to worry until they reach up into the two hundreds, so lets figure out the reasons for the uptake. The right lung - you just went through a very aggressive radiation therapy above your lung and post surgery you had walking pneumonia, I think this is a residual result of that.
#7 rib - Three weeks ago you took a neupegen shot which is designed to stimulate the bone marrow and up your white blood cells. I believe at this point any mild uptake we see in your bones will be due to this. Lymph node under the left arm - Surgery for left mastectomy was recently done and fluid uptake can get caught in various scar tissue. Right lymph node above clavicle - This could be an area of concern since it is the flow in which your particular cancer will go, but, it is a mild uptake and only 4x4 mm and this is not operable. We will continue with the scheduled surgery in two days and remove the right tumor mass, then use radiation to attack the lymph node after you are done healing. Well, not thrilled about the last part, but very relieved about the rest of it. She assured me they will be keeping a close eye on all of it but felt at the next PET\CT scan the other uptakes could be gone. She will get her team of experts together to look at the disc and they will have the perfect game plan for me by next Tuesday.
February 3 2012
The day most doctors said would never happen. Up at 5am to get ready for the surgery of my life or should I say surgery for my life. Ann named it "TUMOR FREE FRIDAY". I didn't have a problem saying good-by in the shower this time because the tumor was so big it was disfiguring, so I was excited to have this one removed. The surgery took 3 hours with two doctors working away at scraping every bit of tissue they were able to get there little scalpels on in that area. Then her little trick to avoid skin grafting is to cut off all the bad skin then pull the skin up from the stomach and under the arm, it is amazing how much skin you can pull. Everything feels reeeeally tight right now, but when I can, I will do stretching exercises and after much time it will be as it was. She is amazing. I prayed before that God would help me with the pain and I would be able to manage with only Tylenol as I tend to get sick on various pain meds. They had already started me on Morphine and when they were scheduled to give me more I told them my pain level was at 7 and if I could try 1000 mg of Tylenol. Answered prayer, it took the edge off. I was brought up to my room where mom and Rebecca keep me company until I feel asleep for a couple hours. Dr Evans came up to my room to check on me at 6:30pm and said she felt very positive about the surgery, she was able to remove all the tissue she hoped to while only taking a portion of the muscle, this would make it possible for me to carry on without any physical therapy. I was thrilled as you can imagine. This meant my kayaking days were not over, I could even arm wrestle in a year or so or do a cart wheel. And best of all, I can pick up Zoe and give her a big cuddly hug! Instructions from the doctor to the nurses were to keep me in a crunch position as she didn't want the skin and muscle pulled and the temperature of the room needed to stay at 80 degrees to keep the muscle warm. I was roasting in that room and asked the doctor if i was well enough to go home. She gave me the okey dokey and when mom arrived at 7:30 she helped me dress and gather my things to go.
I am so thankful for all your prayers and I sit here in amazement of where I started and where I am at this moment, it is absolutely miraculous that I am tumor free.
February 7 2012
Well the weekend went very well. Saturday I went grocery shopping with mom then had many visitors come by to see how I was doing. Sunday my cousin Rebecca picked me up to bring me over to Roxie's house (cousin) for a super bowl \ birthday party. I had so much fun and even won the forth quarter pot. I was doing very well with the tylenol until Monday night. The pain wasn't going away and by Tuesday I was happy to be going to my post op doctor appointments. I thought maybe I over did it and either hurt myself or had an infection. Dr. Syed was happy with what he saw and said he would present my case to the tumor board meeting the next day and after getting all the necessary feed back from the board he will give me the game plan at our next appt. Dr. Evans (surgeon) was not concerned with my pain, she said because of the extensive surgery sometimes the area can go into shock along with being well medicated and she felt it was just now waking up and reacting to the surgery as it should, so she was happy about the pain. She gave me a prescription for 800mg of Ibprofen and that seems to be taking the edge off better. She also gave me one for stronger stuff but it tends to make me sick so I will go with this for now.
I got a call from Nancy and she told me about the incredible baskets Stevens Middle School has been putting together for the talent show\auction happening this Friday and how jealous the other schools were of them. You guys are amazing!!!!
I am so sad I have to miss this event. Rachel is planning on recording it for me and possibly web streaming it the night of.
I truly live in the best town ever!!
February 10
Talent show goes on as planned and I heard it was a great success. Many were there and all had fun and enjoyed the many talents our town has to offer. I can't wait to see the video. Around $9000.00 was raised! Incredible that will take care of my surgery, chemo, radiation and doctor appointments for the year and some post check ups for next year. I can't believe that is no longer something I need to worry about. Thank you family, friends and community.
I was receiving many texts from friends and family at the Talent show and I read them through happy tears. It was so nice to hear about the talents and people who were there enjoying themselves while it was happening. I am one blessed lady!
February 22
Last night I sprung a leak in one of my incisions. Apparently the tubes were not draining well enough so it backed up and
came out at a weak point. Dr. Evans had me in her office early this morning and looked it over. She decided to leave everything as is an let it run its course. She said compared to the extensive surgery, if this is all that happens then she was good with it.
March 12
I think the hardest thing to do is wait for test results. After arriving back from Cali. Dr. Chen wanted me to see the radiologist so I scheduled in Sequim thinking I would be with my previous guy, Dr. Foxly who is fabulous, but when I called I found that he was no longer there so they scheduled me with Dr. Zimmerman. She and her nurse Lynn were a pleasant surprise. I had the most wonderful talk with them and all my concerns were put to rest knowing once again God is in control and leading me in the direction I need to go. Dr. Zimmerman is very much into natural medicine which is very unusual and one of the reasons I appreciated Dr. Foxly. Dr Z was to see about radiation on my left chest wall and side and also the right calvicular area as there is a lump there. She decided to biopsy the area before doing any radiation and to do a bone scan. So off I went for more tests. Naomi drove me to the hospital for the biopsy and they used an ultrasound to find the area and retrieve the tissue. The Dr. doing the procedure showed me the ultrasound and said he was concerned as he was seeing things that weren't in the last pet\ct scan, instead of one enlarged lymph node there were now at least four and there was a particular area that was very suspicious and if he were to see it in the breast tissue he would say it was cancer but in this area it could be a few different things, so he decided to take a few tissue samples to have plenty for the pathologist to look at. When I left the hospital I was pretty low and trying to stay positive. A few hours later I was heading to Sequim for my bone scan and called my mom to tell her what was said. I thought I could keep it together but as soon as I started to tell her the flood gates opened. It took here a while to calm me down and she finally said, honey we don't know the results yet so we need to stay on the positive side and pray that God will take care of it all. Okay God I know you are in control and He even gave me a gentle reminder as Naomi and I left the hospital she reminded me of the 3 dreams she had one night 4 months ago or so. She woke up after each one and could feel God's peace and in each dream I was cancer free. She said after the first one she just thought it was a wishful dream but after the third one she knew it was something she was suppose to tell me. It was the only thing that helped me keep it together for the time being.
When doing a bone scan they inject me with a contrast and I have to wait 45 mins for it all to get into the right places, then they put me in a large tube and I slide in and out of it for another 45 mins. So I have plenty of time think..... I thought of my mom and how she must be feeling after the news I just gave her. I started thinking how I would feel if that were my daughter and I made myself cry for my mommy. I thought maybe I should of waited till I had the results, but then again if it were my daughter I would want to be there for her. Ohhh....way to much time to think.
March 14
I just arrived at the cancer treatment center in Renton and what an interesting drive I had. I decided to come by myself knowing I would receive a call today with the results of my biopsy and I just wanted to be alone so I could handle the news what ever it was to be.
Port Angeles weather was cold but not bad and by the time I got to Gardiner the snow was coming down hard and it continued to get heavier as I drove along, a couple of trucks had already slid into the ditch and the police were busy helping out. I decided to put my blue tooth in so I was ready for anything. Moments later the phone rang and it was Sequim cancer center with the results of my biopsy......NO SIGN OF MATASTICY!!!!! Music to my ears, I better call mom. It was the same music to her ears, and after discussing what it was that the Dr. doing the biopsy saw, we decided that either it was just a weird thing or God answered our prayers and took it away. I sit here now hooked up to my infusion machine, 75 grams of vitamin C being pumped into my veins with Herceptin, Navelbien,
5-F-U, Leucovorin and my favorite anti-nausea med waiting to be infused and I am so happy!
APRIL
And POP went the balloon!
Plan A was that I would go to see the radiologist and they would take me off chemo for 8 to 10 weeks which would allow my incision to finish healing. I met Dr. Zimmerman a great lady and terrific radiologist. She said she just recently received information of a new bone scan that is 45% more accurate then my previous CT bone scans and before she took me off the chemo she wanted me to get the new scan done so they had a good base for me. The following Monday I'm back in the tube. results came back which revealed the cancer had metastasized to parts of my bones. Good news is that it is not "bone cancer" but metastasized breast cancer, so the information they have from the chemo sensitivity test they took on the tumor they removed would be very helpful in killing this one. So we are on plan B. Which is stay on the chemo plus adding a daily chemo pill, go to a wound specialist to help with the healing of the opening incision, no radiation. I was very grateful to God, as the former CT scans did not show this clearly and had I not seen Dr. Z I would not of had the new scan and it could of been months till this was found. It is an early detection and the Doctors are very hopeful and positive about this. Please continue to pray for me as I go through this, I don't want to forget the big picture or miss the blessings I know God has in-store for me.
Well the chemo pill is no walk in the park. I need to take 5 pills a day for 21 days then I get 7 days off. Tomorrow is the end of my 7 days off and it has been reeeeally nice not having to take them, I'm even feeling a little anxious because it is also the day I go for my regular weekly chemo treatments too. I just keep telling myself....I'll live..... and that is a very good thing. In 5 weeks I will have a series of test run to see how the chemo is working on the 'mets' (metastatic). My prayer request to you all is that all the chemo I am taking is doing some major damaged to the mets. I am waiting for a miracle and hope to see the doctor stumped, finding there is no evidence of disease anywhere. Its happened to others and even some I know so why not me. So you all have some major praying to do again and I will be praying for all of you too because you are truly a blessing to me and I am alive today because you choose to lift me up and be diligent in praying for a miracle in my life and I got it. That was so awesome.
APRIL 19
I was nervously anticipating taking "The Chemo Pill" this morning. But like a good girl I made my kefir shake and took my medicine. Melanie was driving me to Renton for my weekly chemo infusions and upon arrival they weigh me and take my vitals. Vitals are good but I dropped a few more pounds, total of 10 pounds in 3 weeks. They take 3 vials of blood then hook me up to my big vitamin bag while they run the tests. When they came back we found that my white blood cells have dropped way below the norm and they were unable to administer chemo that day, I told them I had already taken my morning pill and they said that was fine but to stop those for the week too. I know I should of been a bit nervous as I do need to keep the chemo in my system to keep killing the mets, but I had a peace about it for reasons I can't explain. When the nurse left I asked Melanie what she thought and she was my conformation when she said, "I am so relieved right now for you Camille because I really think your body just needs a break from everything and don't worry, God doesn't need chemo to kill cancer." At that moment I knew where my peace was coming from.
After work I had an appointment with the wound specialist, Linda, she decided to change the wound care to a more aggressive treatment so first thing in the morning I will see how that goes. The hope is all the old dead tissue will sluff off this week and we will put a wound vac on it. Word is, it will make a big difference in wound healing even with the chemo so I'm hoping this will sluff it off fast so I can get hooked up with the vac.
MAY 2012
What a tough month this has been. It began with my white blood cell count dropping to the point of causing a bad infection in my wound. The pain was so bad and after seeing a surgeon she determined I need to be in surgery the very next day. She cleaned out the wound and opened it up a little bit more so she could get to the larger part of the infection. After that they were able to order the wound vac and start treatment the next week. They let me know that because my body was so compromised from the chemo and radiation they were giving me a 50/50 chance that this was going to work. That was so discouraging to me because I thought this was a for sure thing. So once you start the therapy you have to go to the hospital every other day to change the dressing, while I was there Dr. Hiesterkamp wanted to send specimen down to the lab to see exactly what bacteria's she was dealing with, turned out to be quite a few. They started me up on 2 different antibiotics, they both needed to be administered I.V. one of them took 30mins and the other took 2hours.
June and July
Well these months were very trying. I ended up in the hospital for and infection in my chest wound that traveled to my lung and filled it with over a liter of fluid causing my breathing to be very limited. I was at Olympic Memorial for one and a half weeks then sent to Virginia Mason in Seattle for almost another 2 weeks. While there I saw a plethora of medical personnel of a variety of professions. They determined the chest wound would not heal and needed plastic surgery. While there they inserted a chest tube to continue draining the lung. This was very painful. They wanted me to see a Thoracic Surgeon who would be returning from a conference in 2 days to see if he could help me and I ended up in the hospital a day longer. He agreed with surgery but explained there was more of a risk involved as the pleura (paper thin lining around the lung) had become fused to the rib. The rib they feel has become dead from radiation and needs to be removed. In fact they feel 3 ribs and part of the sternum could be involved but they won't know until they go in and start cutting. They say it is a 30% chance the surgery could leave me with tubes unmanageable and I could spend the rest of my life in a nursing home. He sent me for another opinion and he had an added option that sounded a little better but the risk was still the same. After going over it again with the first thoracic surgeon, I felt I was being brushed off. This was confirmed when I talked to the plastic surgeon and he said he likes his chances of positive surgery to be up in the 90% not down in the 70% and told him he would rather have the other surgeon do it if he was willing. Well this put my confidence in the surgery to a new low. I have been praying for Gods lead in all this and it has come about in a strange way. As of now I am not able to be on Chemotherapy as it will cause infection to the wound again and they may not be able to fix it next time because of the damage to the lung. I had my church family pray and anoint me and the following Monday had a bone scan. The doctor reported that the cancer was significantly receding from every bone effected. Praise God!! This made it much more tolerable to be off the chemo. So it gave me time to seek God's lead on the surgery.
August
Some really cool things that have happened this month. First off my mommy and sister came to visit and help me through this, they did deep cleaning in my house and helped me get my nutritional level up and my sprits up. They were here for 2 weeks and it was so hard to let them go. Aside from the miraculous receding of the bone, I have been seeing this wonderful wound specialist which put me on a regimen that has been healing the perimeter of the wound. She was so surprised that it made her cry, she said she had patients that were not having to deal with chemo, infection, malnutrition (I lost 40lb in the past 3 months from loss of appetite mostly in the hospital) or any of my other issues and they have not healed as quickly as I have. I also spoke with my oncologist and he is wanting me to look into Hyperbaric Chamber, they have had incredible progress with it where radiation is concern. My Naturopathic doctor had recommended it to me months ago to start after I was finished with chemo treatments.
8/13 I had a really productive day even took a bike ride and that night I was sitting up in bed and John was telling me about something he ate was salty and when I repeated what he said i couldn't say the word salty, i said its saaty, its sorty, its serty john said what are you doing say salty. I said I think i over did it today and I'm just tired so i laid down to sleep but John asked me a question about 5 mins later and when i answered him only jibberish came out. i thought i just needed to get up and walk around and take some deep breaths but John said we were going to the hospital now when we got there they thought I was having a stroke since I couldn't talk and they got me in for a brain scan asap and found a 5 centimeter tumor. It had just swelled enough to effect my speech and my vision started doing wacky things too like taking one eye off of the doctor. They gave me all the appropriate shots to get the swelling down then kept me overnight to keep and eye on me. The next morning I was back to normal (if that is what this all is) and able to go home. They put me on a steroid that will keep the swelling down so I can function well. I saw the radiologist Dr. Zimmerman (the most amazing woman) soon after and she was very confident that with the newest radiation machine they got a year ago, in fact we have right here on the Olympic Peninsula the second radiation machine in the USA the first one went to the Mayo Clinic. People come from all over the world to be treated. She has had great success and felt very confident she could take care of it. She also spoke of the Hyperbaric Chamber, she was in the navy and had a lot of experience with it and had seen it do incredible healing on wounds and bringing blood vessel and cell production to life in tissue and bone. This would be and answer to prayer in my situation. I know this sounds strange but having this brain tumor has put me in a place where it is obvious I need to hold off on the surgery. I was concerned about not being on chemo but two strong prayer warriors Melanie and Naomi at separate times had told me what a peace they had that I was not on the chemo and they felt God was taking care of it. This was confirmed while mom and Lia were here, they went with Janet and I to Seattle for a doctor visit where they took a CT scan and found no uptake to the bones where the cancer was. I was concerned though about the brain tumor arising due to no chemo until I saw the oncologist and he told me about the brain blood blocker and it was most likely unaffected by the chemo due to this natural protection it is a place that has been known metastasis to, we will never know if it is malignant as radiation will just wipe it out and there is no need for a biopsy. So all this said as we are praying for complete healing of the bones, lungs, wound and cancer it is exciting when we see answer to prayer like this. The doctors tell me due to the severity of the wound it could take up to 60 treatments in the Hyperbaric chamber at 2 treatments a day. This would take me to Seattle to live for a month which would be very expensive so I called the hospital in Long Beach where I did my other treatments at and found they have one there and I could stay with my mom again and she could bring me to my treatments. This would be a less expensive option. I am still seeking what it is that God wants me to do and trying to stay positive knowing that complete healing is something God can do and it is His will that I live a long life abundant and full, so I concentrate on living like a well woman. A friend of mine Kim was chased by the hounds of Heaven to send me a great book called the 10 day Spiritual healing (I recommend it to anyone desiring a peace beyond understanding and a real hope for complete healing) it is on the Kenneth Copeland website). It has been such a blessing and keeps me hopeful. It has taught me to pray for this healing in a strong Biblical way and I can see the positive changes in the way I think, feel and act. I know all this has changed my life in many incredible ways that would not be, and I am thankful for the new strengths, insights, relationships and much more I am gaining through this and will continue to fight the good fight. My sweet husband john reads a chapter out of the book to me every night and it is soothing to my mind and brings hope to my Spirit before i rest for the night. Please do continue to pray for my complete healing. My prayer has been that I meet all my grandchildren and they know me well. And I look forward to it, knowing the great promises of healing I have in a Great God.
MORE IN AUGUST Was up most the night thinking about my 8am appointment with the oncologists. I was hoping since the radiologist was in the same building i could see what was going on with the insurance. When I got there I had many questions as a variety of issues have come up but he put many of them to rest and feels most will resolve after the tumor is removed. We did a complete scan of the bones and they are stable so that is answer to prayer as I haven't been on the full regiment of chemo, so the hormone therapy is doing its job. There are a few biopsy's they will have to do on a couple new little bumps so please be praying for a big negative on those, because it could slow down the hyperbaric chamber idea to start working on the wound. While I was there the doctor went over and got the radiation nurse to come over and get me set up for consultation. He also got me in right away to get my Herceptin and saved me a trip to Renton. While the pharmacist was mixing it up, I got my consult. And she told me they just received conformation from insurance and could start the mapping on Thursday, then radiation beginning of next week. All this and i was out of there by 11am. I like when God schedules things. First day back to work tomorrow, excited to see how it will all be working out this school year, I have a couple sweet new girls that I will be working with. Praying I will be able to schedule the radiation around my job.
STILL MORE IN AUGUST
I had my fitting for the radiation on the brain tumor to come. incredibly enough, here on the Olympics we have the second radiation machine in the USA that has change the radiation world, The Varian "True Beam" Linear Accelerator. They set me up on the table and mix a bag o goop, activate it then put it under my head and it swells up to perfectly fit around it just up past my ears. Then they make a mouth mold and when the two are clamp together they hold your head perfectly still and you cannot budge. The alternative to this, which is still done in many top notch hospitals is to have screws surgically inserted to your scull then you are clamped down to the table for a less exact radiation treatment. True Beam is absolute exact. Dr. Zimmerman is grrrrreat. Answered prayer, Radiation schedule is at 4pm. I will work my full schedule and Naomi said she willl drive me over.
Isaiah 53:4-5 You, Lord, have taken my grief's (sicknesses, weaknesses and distresses) and carried my sorrows and pains. You were wounded for my transgressions, bruised for my guilt and iniquities; the chastisement needed for my peace and well-being was upon You, Jesus, and by your stripes I am healed and made whole.
I love that this is reads present tense "I am healed" so I am really just experiencing the manifestation of my complete healing unfold.
SEPTEMBER
Experiencing more and more side effects and had to go to the emergency. My face was swelling up and weakness in my legs is getting worse. I've lost 70% use of my right arm and my vision will sporadically get a little blurred. That day I was very foggy headed. The doctor said since the tumor is on the left side it is causing the right arm to weaken and he feels it will come back after the tumor is gone and pressure released. The steroids they have me on work the opposite of what you would think as these ones weaken the body and they don't like to have people on them for more the a couple weeks, I have been on them over a month and need to stay on them as they are keeping the tumor area from swelling. They are now throwing my blood sugars off and all I can say is God is good as my blood sugar was 427 (normal is 150) The doctor said I should of been passed out somewhere but instead I had worked all day and been driving around. I am now having to do all the diabetic stuff, pokes and shots. I am learning so much.
Wednesday 12th got my first radiation shot yippy!! It takes an hour from start to finish, They put me on the table and fit my head into the mold they made with the mouth piece then clamp it down nice and tight. I just closed my eyes an have d tried to relax and I did such a good job because 45 min later I was waking up from a nice little nap. Naomi and Janet were waiting for me when I came out they have been such a great support to me (i love you bunches) Friday i got my second shot and it went as perfect as my first. The radiation crew are the best. Next week I will go in on Monday, Wednesday and Friday that will be enough to completely blast this sucker to smithereens. In the mean time i am able to still work and I rest a lot in between.
Isaiah 40:29, 31 You give power to me when I am faint and weary. In my weakness, You increase strength in me. I wait for You expect, look for, and hope in you) and You renew my strength and power. I will lift up with wings of strength and rise as an eagle. i shall run and not be weary, i shall walk and not faint or become tired.
MORE SEPTEMBER
Friday 21st my last radiation shot Alleluia...I came out of the treatment room to the Doctor and techs holding up a certificate of completion. then around the next corner were my faithful friends Janet and Naomi BIG HUGS!!!! Dr. Kummets nurse was there to whisk me off to Oncology for the next part of this journey, addressing the suspicious cluster on lumps below the chest wound. We had our talk, did and exam to compare them to the pictures we took last month and he felt there was little change and he set me up for a needle biopsy on Monday with the results on Wednesday. Monday they called me at 9am to come in at 10am I was at work but able to take my lunch break early. The pathologist decided to take a sample from 3 different areas 2 lumps below the chest wound and 1 lump above it next to the clavicle bone. They don't give you anything to numb you up because they have to stick a needle in you and if they numb you then its 2 needles, but the aspiration needle is reeeeeally big and they have to move it around a bit while there in there. Owie!!! They put the fluid in separate containers but also make a slide of each one to look at right away to make sure they have what they need while I'm still there in case they have to get more. Well when he came back in he said he got good fluid and even added that he did not see any cancer cells on any of the slides!!!!! Of course they will examine all the fluid and give a full report on Wednesday, but I asked him if the percentage was high or low that the rest would be clear. He said it looks good and he would send the slide report to Dr. Kummet that day and the full report the next day. thank you for your prayer support God is listening and answering. The Doctors had already determined these were cancer and were planning how they were going to combat it. The biggest problem with this is that chemotherapy is what caused the wound to get so infected and reverse the healing process so I can't do chemo until the wound is healed as infection could be even worse then last time and unmanageable. it would be quite the dilemma so I am thrilled to no end for answered prayer.
Philippians 1:6 I am convinced and sure that He who began a good work in me will continue until the day of Jesus Christ, developing and perfecting and bringing it to full completion in me.
LAST IN SEPETMBER
All the results are in and all the fluid was negative. The Doctor is still stumped, I love it when that happens!!! I know that God healed me!!! Now I am cleared to go to California and start the healing of this hole in my chest. I will be so happy not to have to do dressing changes or even just looking at it. It's pretty freaky looking at your rib bones. I was on the website for Long Beach Memorial Hosp. hyperbaric chamber and noticed a list of things that were important to tell your doctor and one of them had to do with water in the pleura which is what I was hospitalized for last Spring. It didn't say you couldn't do it, so I am hoping and asking for your prayers again that all goes well and they are able to get me in the chamber. I called Dr. Syed in Calif. to set up an appointment and they can get me in at 3:00pm on the 10th of October. I called my mom to let her know that I would be arriving around then but hoping to work right up to the day. Well we found a ticket soon after that will put me in Long Beach at 1pm on the 10th. Mom said we will have just enough time for a quick lunch before my appointment. So things are already working out. Oh yeah the plane ticket cost $104.87. What a deal!!!!
Philippians 4:6-7 I will not fret or have anxiety about anything, but in every circumstance and in everything, by prayer and petition with thanksgiving, continue to make my requests known to God. God's peace which transcends all understanding, shall garrison and mount guard over my heart and mind in Christ Jesus
October
This has been a very emotionally roller coaster month! After arriving in California I expected everything to go as well as it went last time. Dr. Syed the man who spearheaded it all last year had a family emergency and was in India. So i was left with a substitute doctor who was very nice but knew nothing about me and started running tests. He was unsure of the report I brought him from the doctors back home and wanted tests done again as he felt I had cancer close to the wound site and didn't think i could go into Hyperbaric or surgery. Not what I waned to hear. Next was an appt with Dr. Evans my surgeon she was much more optimistic and wanted me in hyperbaric and felt we should at least get the ball rolling with the insurance while we are waiting for all the tests to come back. Tests ordered were Pet/CT scan on the whole body and an MRi of the brain, a series of blood work and chest x-ray. It took a couple weeks to get them all done and the results, which is how long it took for the insurance to preapprove the hyperbaric treatment. the results of the tests were not much help because when you see the areas light up in the body they could be 1 of 2 things, it either shows the area is infected or the area has a tumor which could be malignant or benign. And it did light up in the area of the wound. If there is cancer there then everything changes as they cannot do surgery to cover up the wound if cancer exist. I did take a test before I left home, it was the aspirated biopsy on the lumps below the wound which they found to be clear of cancer and since it was linked with the more suspicious lumps it was considered to be so for all of them as they didn't want to disturb the lumps closest to the wound because healing in that area is not good. I continue to stand on that truth, there is no cancer in that area and healing will take place in due time. i had an appt with Dr. Hurvitz, she is the head of the UCLA breast cancer research center and she was very optimistic about the cancer she spoke of being able to do maintenance on the cancer cells to keep them under control and not growing. In many cases study shows that the life expand of the women who were cured and women who's cancer was managed were the same. That was encouraging and she felt with a good regiment of hormone blocking medicine would do this for me. I am on Herceptin, Arimidex, tykerb, and exgevia (not sure of the spelling) They all starve the cancer in one way or another and make it difficult for it to grow. They will run a blood test tomorrow get tumor markers and watch it that way seeing if the meds are working. She also spoke of a drug that the FDA would be approving early next year that would be beneficial to me as it targets the cancer cell only then releases Herceptin and a chemo directly into the cell, it does not affect any other cells but the cancer cells so the bad effects like losing your hair and getting sick doesn't happen.(amazing) It is specific for my type of cancer too so she said when i get this wound taken care of I should be all healed up by the time the drug is released, so that was very hopeful. Next i had an appt with a group of doctors, Dr. Miller (Hyperbaric) had a Thoracic Surgeon and Plastic Surgeon meet with me to discuss the wound. They came up with a plan to do 20 treatments of hyperbaric then go into surgery to clean out all the dead tissue and bone, then they would leave the wound open and put me back into hyperbaric to allow more healing to take place. In the mean time they will check all the tissue and bones for cancer.. if any is found then we can't go on but when they find no cancer and see the wound being miraculously healed then they will take me back into surgery and do a skin graft to close up the hole. Next week they will be doing a test on my bones in the wound area to see how deep the necrosis is, The plastic surgeon was very positive and said he had seen much worse and found there was much more live bone then expected so he would stay positive with me. If there is to much dead bone to remove and it interferes with the lungs then they will need to come up with a different plan. So as you can see much prayer is needed. The most important is that there is no cancer any where near the chest wound area and that my bones are healthy and they only have to scrape a small amount off the surface. Also for healing of the wound itself because as of now it has not grown any new tissue on its own for months. i just had my first hyperbaric treatment yesterday 10/30 and will go every day, we are expecting to see healing so the surgeons have something to attach the skin graft to when the time comes.
Psalm 91 Because i have made You Lord, my refuge, and the Most High my dwelling place, there shall no evil befall me, nor any plague or calamity come near my house. Because i have set my love on You Lord, therefore You deliver me. You set me securely on high, because i have known Your Name. I call upon You Lord and You answer me in trouble. You deliver and honor me. With LONG LIFE (I like that part) You will satisfy me and show me Your salvation.
November
This has been a whirl wind month so many doctors have looked at the inside of me by way of ultrasounds, xrays, bone scans, ct scans and pet scans. It delayed the hyperbaric treatment that I originally came here for by weeks.
I really expected to be in and out of surgery by now, although I am thankful they are being careful with me. The
hyperbaric treatments are quite interesting. It is 100% oxygen and I am closed up in a big clear tube. Because it is highly
combustible you can only wear 100% cotton so there is no possibility of static electricity. There is a TV attached to the outside of the tube so I can watch a movie while I am pumped up with oxygen. I am in there for 1 ½ hours.
Mom sits on the outside watching the movie with me and there is a phone she can pick up to laugh with me at the silly parts. I will do 1 treatment daily for 20 days then they will do the first surgery of debris removal in the wound. On the 23th I had a bone scan which was very important as it would tell me if there is blood flow in the 3 exposed rib bones. By the
looks of it the doctors were not hopeful but I told them that God has given me much hope and so I would stay hopeful.
I got the results on the 26th and they found blood flow in all the ribs. So surgery was scheduled for December 4th. This was a huge deal because of the pleura being attached to the bone had made this surgery so dangerous. There was a 30% chance I would end up with unmanageable chest tubes that would put me in a nursing home for the rest of my life.
When I got the results the doctor was still a little pessimistic, he said the other doctor felt this could work and was staying on the positive side but he said he could only give me a 50% chance that surgery would be successful.
DECEMBER
Day of surgery. Up at 6am to be at the hospital for prep at 8am and surgery at 10am. I awoke to the first smile I'v seen on my surgeons face. He said he was pleasantly surprised at how well surgery went as he had not expected to see as much live tissue as he saw. He said for the first time he felt this was going to work out. What a great feeling that was to know that all this time away from my family again for Thanksgiving and Christmas would ensure us to have many more other Christmas's to come. They put a wound vac on while I was still in surgery and brought me down to the hyperbaric chamber the very next morning to help in the healing. I stayed a couple days in the hospital, but continued hyperbaric every other day making sure the granulation of the tissue would keep getting better. It kept getting better, but it is slow going so the doctor gave me a choice. He said the hyperbaric had done its job and I had the choice of just keeping on the wound vac and going home until the healing was at 90% or more.
JANUARY 2013
I arrived back home in Washington January 5th then the next morning spent the day at Sierra's house for a delicious Christmas breakfast with family and friends. Monday morning came to soon and when the alarm went off I got up to get ready for work. It was nice to be back with my fabulous colleagues and sweet students. I also found it nice to be in my old normal again.
I had an appointment with the wound care nurse to begin my wound care, then another appointment with the oncologist to continue all my meds. I was set up for Monday Wednesday Friday to have the wound vac dressing changed and every three weeks I have my Herceptin drip then an xgeva shot every four weeks and 4 pills of tycurb taken every day along with 1 aremidex. This is the recipe to keep the bone cancer from growing while we concentrate on healing the wound. They are hormone blockers that target the cancer cells and block the hormones that the cancer needs to feed on to grow. The hope is to stop the growth or slow it way down. It has been successfully used for many years for Her2nu positive breast cancer. This allows me not to be on any chemotherapy that causes the cells to die and make healing very hard for my body to do. I will get a bone scan done soon to see if it is working.
FEBRUARY
On the 4th I got a bone scan done and results came the following Wednesday. They said that on all the bone mets they found none of the cancer had grown and in 4 areas it had actually receded. When I asked them how it could recede he said when it comes to me they stopped trying to figure out how it all works out, they just say, yea Camille's body. This was the best news as now I can relax about the healing of the chest wound taking so long. Especially since I got a yeast rash from the draping around the wound and had to go off the wound vac for over 2 weeks so healing is even a bit slower. March 15th I will have a brain scan done to make sure all is well in that area. My right arm continues to grow stronger, it still does not have the range of motion but I will continue stretch and exercise it. I know the most important thing is to keep a good attitude and have faith and hope for a long future, I always say I have a lot of people praying for me and big God so with all that going for me I am doing just that. My days are filled with work, doctor apt, Mariah's basketball games and spending what leftover time I find with my husband, I am thankful for his patients and care for me. I am thankful for the friends that come and sit with me in the hospital knowing that is the only time I have to visit them.
Carpe diem (Cease the day) is one of my new favorite things to remember.
MARCH
A long day in the hospital yesterday. A wound vac change, blood work done and a brain scan. I didn't get out of there until 7pm I should get the results on Tuesday during my Dr. appointment with the oncologist. I'm glad the people who work at the hospital are nice happy people and fun to be around. The wound is looking pretty good, still not ready for a trip to California, there is some concern for a small infection in a tiny section of the wound and they are not sure what to do with it yet. We have Spring break coming up first week of April so my choices are to go to Calif and let the docs there check it out or go over to Seattle area and talk with the docs that brought me back to life last summer. There is a wound care doctor, plastic surgeon and thoracic surgeon there that hasn't seen me since my brain tumor and the doctors in Calif said it would be a good idea to fill them in just incase we needed them. Monday, Wednesday, Friday I will go to the short stay at the hospital for wound vac dressing change 3:30pm-5:00pm, every other Tuesday or Thursday to Sequim for medicine infusions 4:00pm-5:30pm. Between all that I'm pretty tired but try to get some cuddle time with Zoe and quality time with the rest of my family and friends. Sierra and Joe are inches away from owning their first home and Ross is heading to Japan tonight for some long awaited quality time with his fiancée, Kyeong. Mariah will be signing her letter of acceptance to Olympic College where she is receiving a double scholarship, one for basketball and one for fastpitch. And Rylan is enjoying his job working in a lumber mill and meeting new friends. It has been very tough to go through this season of our lives fighting a disease so these fun things are happily welcomed. My emotions continue to ride the roller-coaster but my faith keeps me grounded even through the arguments I sporadically have with the One who knit me in my mothers womb. I try and focus on all the miracles He has blessed me with, but never imagined I would still be dealing with this disease 6 years later. I am thankful to still be able to strive for a relationship with all my unborn grandchildren but there are days when Heaven looks pretty good. I know my place is here and I am very happy about that. My hope is to continue the good fight and win!! One of my favorite sayings I heard on The Best Exotic Marigold Hotel, "Everything works out in the end, and if its not working out, its not the end yet!!!"
APRIL 2013
Well April just began and Spring break just ended and we are all back to school now and just in time as the rain has decided to water this part of the world. My rhubarb plant has to be the fastest growing vegetable in the world, every day I walk by it has added an inch to its leaves and/or a new red bulb has popped out of the ground. I love the Spring as it reminds me of new life and the promises I have from a Great GOD. I am leaning heavily on them now as my condition has slightly changed. I developed a small lump on my upper middle chest about 2 inch below my chin and the biopsy has come back positive. After consulting with the doctors they are hoping the new chemo the FDA just approved around my birthday will be covered by my insurance as it will be exactly what I need to began fighting this bad boy. Now I also made a trip to Seattle to visit the wound doctor (Jessica Pierce) and plastic surgeon (Dr. Schlinker). They both had great news for me. They have not seen my wound since last summer and had very little hope for its healing back then. When they saw it this time they couldn't be happier, they said it is ready for an addadictomy, this is a process where they take the foreskin which has been donated from the many circumcises done daily and process them for use in wound care, in my case it will do two things, one help my wound to build up granulation which is healthy tissue and two, when they see it working it tells them my wound will accept a skin graft. They place the processed skin into the wound and leave it on for a week to allow the healthy tissue to be used by my cells then they remove what is left after a week and replace it with a new one, this will happen for a couple months or until it is absolutely ready for skin graft. Now I questioned Dr. Pierce about the name of the procedure and if this was true.... Come on... addadictomy....foreskin...LOL she informed me this is what her office calls it cause its funny and easier to remember and you know she's right cause I don't even remember what its real name is LOL. So I told her I would be able to go ahead with it since I wasn't Jewish. Hee Hee Hee. Although God has given me a peace about this my human mind keeps butting in trying to rob me of this peace as I wait for the insurance to give the answer for both procedures. I had a full body Pet scan yesterday to make absolute sure it is no where else and will get the results for that on Thursday. Until then I will keep thinking positive thoughts knowing you all are praying for me and expecting the best to arise in me. I know God has a plan and I will keep seeking it.
2 Timothy 1:7 God has not given me a spirit of timidity and fear. He has given me a spirit of power and of love and of a calm and well-balanced mind, discipline and self-control.
More April stuff
Well the pet scan results are in and they are positive :( I was a bit disappointed and had a little argument with my maker, I reminded Him of all the people praying for me and of all the scripture I read to cover myself with (when I remember) and how I try reeeally hard (and sometimes hit the mark) to glorify Him with everything that has happened to me so all this, which seems so bad, could hopefully be used for good. He reminded me of the Apostle Paul and how when he came to God over and over again asking to take the thorn from his side, God replied "My Grace Is Sufficient for you. Well I didn't like that answer anymore then Paul probably did. I had a chat with Mary yesterday who is also going through a tough time, I wanted to encourage her and was reminded about a time when I was laying in bed in that space between asleep and awake when I started chatting with God and I said, "You know, You are the beginning and the end, the holder of all space and time so what if we go back in time to the place where I have to make the decision to do the tissue transfer surgery and instead of saying yes, I say no, then all this is wiped away, there is no cancer, no mastectomy, no infection, now wound, I just get my life back." And He said "Okay, I will do that for you, but if we do this remember everything that has happened between then and now will also be wiped away." Well I started thinking about "everything" and the first thing that came to mind was my family and even though we have this thorn in our sides some how their faith has grown and their attitude towards life is clearer as they watch God work in my life and see His power working in their lives. I thought of my mom and Bob and the day he told me that he and mom prayed for me at night together before they go to sleep. My mom has her own prayer chain and they are so faithful to pray for me as she keeps them well informed so their prayers are specific. Mom and dad are not normally a praying people yet their relationship with God is somehow closer because of this. My sister Lia is the same way but now she finds herself praying while she takes a walk, drives to work, taking a shower, in so much of her day she talks to God and not just about me but everything an she finds that her days seem more hopeful and her attitude is brighter. She even agreed to read the Bible through with me this year. People have come together against all odds to support me with spaghetti feeds, talent shows, cards, dinners, uplifting talks to keep me centered, driving me to appointments, people who have never met me and know my situation through a friend have sent me cards to tell me they are praying for me and putting me on other prayer lists and much more. Many of them say how they are touched to see God working in me and some how this thorn in my side has brought them closer to the One who causes the sun to rise and fall and yet He is so personal with me that He has the hairs on my head counted (and believe me with all the chemo injected and hair coming and going that has been a chore). Am I reeeeally ready to wipe away my cancer journey in its entirety? No, this is when I realized that His Grace is sufficient for me. You know in this life shit happens, God didn't throw this at me, it happened because this is just the world that we live in, it is full of disease and bad things happen because sin exists in this world and we are all susceptible. When life happens it is how we deal with it that makes a difference in life, we can choose to make it better or wallow in our sorrow and give up and let it take over our life. Our Choice. I have found that when I choose to look to God for my answers (doesn't always happen but I keep trying) my attitude was better, I was more hopeful, my faith grew stronger and others were blessed. His Grace is sufficient for me. I went to see one of my favorite doctors Jessica and showed her my pet scan results and she put it in perspective for me, she said I was giving this way to much negative energy as if I just found out I have cancer. She reminded me that the cancer was already in my bones, so no big surprise, we just have to move forward with what is already in place, the new chemo that just got approved in February is the perfect fit for my type of cancer and had this happened last year there would not of been a choice for me and though we were trying to hold off in using it until the wound was healed, but there is a time for everything under the Heavens, and now just happens to be the time for me. So as the famous Dori (from finding Nemo) put it.... Just keep swimming, Just keep swimming, just keep swimming swimming swimming, what do we do we swim swim swim!!!
Please be praying the Chemo and Dermagraft (for the wound) is approved by my insurance.
MAY 30
After a call to the insurance company every other day for the entire month to see if my chemo had been approved they finally gave me the answer I had been hoping for. I just can't believe it took 30 days to get the approval, and let me tell you, I am not naturally an anxious person but everytime I hung up the phone with the insurance company I wanted to scream as the tumor is just below the skins surface and I can actually watch it grow and every day that passed made me more angry then the last. Dermagraft is on the back burner for now until the cancer is gone.
I called Dr. Kummet's office as soon as I found out to let them know the approval letter was being mailed out that day and schedule the infusion. Dr. Kummet said no way are we waiting for the letter to get here!!! He had his office call the insurance company and fax the papers over asap. When they got there they called me and scheduled my infusion for the very next day. What a great doc!
Friday....Work is over and off I go to Sequim for my infusion. It was a 2 hour drip and now I have the weekend to see how I will handle it. We measured the lumps and took pictures so we can watch for any noticeable changes. He said it could take 2 to 3 months before we see anything. My prayer was that God would take the chemo and cause it to work triple overtime!!!
JUNE
I handled the chemo pretty well, I didn't get sick but my tummy was a little sensitive so I lived on Miso soup and Wonton soup and in the morning a protein/vita shake. I've been able to have other things here and there but even now what I handle the best is still that. I still go in Mondays and Thursdays for my vitamin C infusions and every 3weeks they will trade in my Thursday vita C for the chemo. This Thursday I will receive my second infusion of Kadcyla (the official new name of the chemo). The exciting news is the changes in the lumps that have already taken place!! I had a lump the size of a pea on the lower right side at the rib and while we were waiting for the insurance to come through it opened up a little and once it does that it does not heal until the cancer starts dying which is one of the reasons my doctor was getting so angry. Well yesterday while I was changing the dressing on the chest wound I noticed the lump was flattening and it was completely healed over!! This is so exciting for me as not only does it mean the chemo is working on my type of cancer but my prayers have also been answered as it is working triple overtime. I have a doctors appt. tomorrow and can't wait for Dr. Kummet to see the changes.
JUNE 17
Whirl wind day today. Woke up not feeling well and John came home from work sick too so I thought it was just that. But when I went to change my chest wound dressing I noticed there was an abcest that developed over night on the side of the wound so John took me into the emergency. It was about 11:00 in the morning. I got in right away and when the doctor saw me he said it looked like a simple abscess and he would most likely do a 1inch slice across it, drain and pack it and send me home as it could all be done in the emergency room. But first he wanted a couple of tests run so they started with EKG, CTscan and blood work. When they took the CT scan I asked if they were going to do a contrast with it and they said the doctor didn't order it so he must not need it. Weird because they always do a contrast with anything having to do with my chest since its so compromised. When he got the results back the said the infection had gone into my lungs and the heart looks ify too so they wanted me to go to Seattle where they have a Thoracic surgeon that will be needed in the surgery. It is now 8pm and I have not eaten all day because they couldn't decide on surgery. I told them I wanted to have someone drive me over and they were fine with it, but when they called the Thoracic surgeon on duty at Virginia Mason Hosp he said due to the information he got he wanted me ambulanced over. So off I go and it was a fun ride. It usually takes 1hr and 30min to get to Kingston ferry and we got there in 55min. I felt fine so I was sitting up watching all the cars part for us, boy that EMT was a great driver then when we got to the ferry everyone had to be rearranged so we could be the first one off on the other side which usually takes 35min I had no idea those ferry's could move so fast, we got to the other side in 18min. So into the Virginia Mason Hospital I go. The Doctor comes in and says you look pretty stable I wonder why they had you come over by ambulance?!?! My question exactly I say. Sierra wanted to come over right away, but I told her there was no reason and to just get a good nights sleep and come in the morning. The next morning the Thoracic surgeon came in around 10ish and asked if they had done a contrast with the CTscan because he didn't see it anywhere, and to see what he needs to see he needed a contrast. Sooooo off the radiologist I go. They are still not allowing me to eat in case of needed surgery. I call in the nurse at 1pm and ask if the decision has been made and she said it was added in my notes that I can be on a normal diet but she wanted to confirm with the doctor first. 2pm the doc finally comes in to tell me that I can eat whatever I want and according to the scan the lungs and the heart are not involved at all with the infection and he would be in later to do a 1inch slice across the abscess drain and pack it and he wanted me to stay one more night so he could watch for bleeding and if it looks good he will release me in the morning. Wow isn't that what they should of done in the first place at the other hospital?!?! That was a waste of a lot of $ and time. But isn't that how it goes sometimes? And I did get the most BITCHEN ambulance ride ever! My daughter Sierra is the best, she came the very next morning early and never left my side. She brought her computer and movies for us to watch and we just sat around all day enjoying eachothers company while we waited for the doctor. There was this window sill that was about 2feet wide and 4feet long right next to my bed and she put pillows up there and slept there rolled up in a little ball. She said the chair got uncomfortable and wouldn't recline. She is the sweetest ever!
FORTH OF JULY
Another year I get to celebrate our independence, how thankful am I!!!!! The wound is looking good, there is a bit of pain involved so the doctors have been trying a series of drugs on me so I am not using so much IBprofin and Tylenol. He said he wants my liver and kidneys in tiptop shape to handle all the other stuff they want to use to kill the cancer. Which is going well. The lumps continue to shrink, so keep praying that God uses the Kadcycla Chemo to work triple time on the cancer. The pain med that worked the best without making me sick is Oxycodone. They say it won't hurt any of my organs but it is addicting. Great. but after all is done we can slowly take me down and I will be good as new. I can't wait for that day to come. 'GOOD AS NEW'
Mariah is working at the Red Lion now and it is a beautiful hotel on the waterfront, so they are having a BBQ for staff and family and have blocked off a nice grassy area on the waterside of the hotel and brought out chairs and a huge spread of food. The firework display is shot off down the waterfront trail about 1/4th mile down from the hotel so it will be a nice spot to sit and watch. I am thankful for the Freedom we have in the great USA and I am so proud of our military and the sacrifice they and their families have made so we can celebrate this glorious day. And thank you Lord for the freedom you give us in Christ so we can be set free from the chains of sin and live an eternal life in a glorious place, 'Heaven' Where I really will be GOOD AS NEW!!!!
August 2013
Well they did a MRI to check out the progress and found that the Kadcycla is not working perfectly and some of the tumors have increased. That was so surprising to hear. I had felt for sure that this was going to work as it was so perfect for all that ailed me. When I found out the news I didn't understand why. I felt my hope starting to slip away. Three of the tumors around the base of the neck had grown large enough that the doctor was concerned and wanted me to talk to Dr. Zimmerman about radiating the whole area. She agreed and we started a pretty strong zap 5 days a week. Two weeks into it I was having more pain in my lower back, left side. I went to the Chiropractor and he found a lump and wanted me to get it checked out. I did and we found another tumor so Dr. Zimmerman just added it on to the rest of the radiation. She said she was hoping the insurance would put it through asap so we could shoot it along with the others. It has usually taken up to 3 weeks for them to put through an okey dokey. Naomi and I left and met up with Karen Q. and we had a prayer time. Karen went straight to the source and prayed that the insurance would clear this in record time. Well, the next day I went to my radiation appt and they said I had to go in to get the lower back mapped out for radiation because the insurance had cleared it. She said she had never seen it clear that fast. Well after the CT scan it has to go to about 3 different doctors to okay the mapping and it usually takes a week. The next day when I went in for my appt they said they were going to zap the back. Apparently while one of the doctors were looking at my scan the others happen to come in for one reason or another and while they were there decided to look it over and it got okayed. Miraculously 3 days later I was getting the radiation on that area. Within a week my back was starting to feel better. The tumor had wrapped around a muscle which was causing the pain and it responded very well to the radiation, so did the other tumors around my neck. Because they had to use a strong ray on the lower neck area it became very burned and blistered. Ouch. I remembered Dr. Gignac telling me how successful tea tree oil worked on radiation burns so I got some aloe vera and mix it with the tea tree oil and slathered it all over the area, it healed up fast and nicely.
September 2013
While at a wedding I was turned around in my chair watching the sweet couple listen to their bestes of friends reveal to the rest of us their secrets in a toast. As I leaned back against the table I felt a bump so I adjusted my sweater and leaned back against the table again I still felt the bump so I adjusted my dress to see if that would make a difference but it didn't and when I put my hand back to feel it I found it was another lump. The next day I showed it to Dr. Zimmerman and she said the problem is that she could just zap it but soon another will pop up and then another and what I really need is something systemic to reach all the places growing that we can't see. The problem with that is it means chemo and last time I was on a chemo that was not targeted to the cancer cells my wound got horribly infected and I ended up in the hospital for 3 weeks. The doctors then told me that if it gets that bad again they don't know if they could get it back under control. All I could think of was that I could possibly go back to California and see if Hyperthermia could be an option for me. I called and made an appt Dr. Syed could get me in Oct 2. I talked to Dr. Kummet in Sequim and he asked if I would first see if he could find a specialist that could help me. He called the Seattle Cancer Care Alliance and found a doctor who specializes in Her2new breast cancer and had just finished a clinical trial that was very successful. Dr. Lupe Salazar had found that a cream used for genital warts called Imiquimod was the only thing that worked without reoccurrence because it caused the body to use its own immune system to increase in the area needed. She tested it with a chemo Abraxane and found that the two of them complemented each other so well that they are publishing it and getting ready to distribute it to the nation in December. The earliest appointment she had was October 2. So now I had to make the choice to stay here or go to California. I took a pole and the consensus was to see what Dr. Salazar had to say so I cancelled my appt in California. I really liked Dr. Salazar the moment she walked into the room. She is very down to earth and very through. I liked what she had to say and felt very hopeful, more then I have in quite a while. I've also gotten back on Kagen water the high alkaline water, and I have been feeling really well. My energy level is up and my pain is lessened. I am also boosting up my vitamins and hopefully getting to a place where I can handle chemo again. Dr. S said that when using the cream right over the tumor site it allowed her to lowered the milligrams of the chemo from 130 to 80 and patients are infused low doses once a week instead of a high dose every 3 to 4 weeks. She found with certain high doses of vitamins most of her patients did not have mouth sores or neuropathy in their feet, although they still lost their hair. The majority of them had healing in 3 months and the rest had healing in 6+months. I thought when she looked at my tumor sites and wound she would think they were awful but she didn't even blink and eye, she had seen far worse and still had success. October 17th is the starting date should I choose to do it. So far its a yes.
October
Well I have now completed 2 rounds of Chemo with the Imiquimod cream. So far so good I haven't felt to bad and my energy level is pretty good. I even painted my kitchen to match the new counters my wonderful husband surprised me with. The last appointment I was at they said my red blood cells were low and asked if I was feeling tired, they were surprised when I told them how well I had been doing so they allowed me to receive the chemo and said they would check my iron next time and if it went down any more I may have to get a blood transfusion. There are so many illnesses going around I have been drinking apple cider vinegar tea with lemon and honey hoping to stay well. John and Rylan are both feeling under the weather so I have them drinking tea too and keeping their distance from me. I remember Dr. Gignac telling me that the chemo will work in my system against the cancer cells for 3 to 4 days and after that I can drink lots of water to flush the chemicals out of my system. I figured the Kangen water will be helpful for this. Went to the eye doctor because my vision has changed since I did hyperbaric. They said It sometimes changes a persons vision and sometimes changes back. Mine flip flopped, my long distance is now blurry and reading is better, it was opposite so they changed my lenses and I should be seeing perfect again in 10 days. I was happy to have such an easy fix, that doesn't happen often.
November
Well, I finished my first round of chemo with the imiqumod and so far so good. The tumors are changing, they kind of look like they are melting but lots of open wounds and scabbing going on, this is either very good or very bad, we will find out Tuesday when I go see Dr. Salazar. Naomi, Janet, Mariah and I went to see the wound specialist Dr. Jess and she was very pleased with what she saw, even though the wound has been causing me more pain since I started on the chemo it still showed healing. That was very good news, I had been worried about it. My blood work came back good. I told Dr. Kummet that I used cold pressed sesame seed oil after my showers on my skin as Dr. Chen had me do that when my red blood cells would drop and it was a quick fix. Dr. Kummet quickly started looking it up to see why. I love that he is so open to new stuff that could help his patients. So no blood transfusion. Yippy!! My hair is starting to fall out so it looks like I will have to go into my warrior mode and shave a Mohawk for a day by next week. Zoe always gets a kick out of it. I put my hats in a box and stuck it in storage so if I knew anyone who might need them I could pass them on, unfortunately this is the second time I pass them back to me. Maybe that's the problem....I need to burn them or something drastic like that.
Naomi and I went to see Dr. Salazar and right away I told her that I will be able tell how things are going when I see the look on your face as she sees the changes in the tumors. Well lets take a look, she says.....Wow this is exactly what I was hoping to see!!! That was all I needed to hear. She began measuring the tumors on the side under my right arm, then she went back to her notes, scratched her head and came back to measure them again. I asked if everything was alright and she said it's great I just want to double check to see how great. After she was finished she announced that the measured area is almost half the size from the last measurement. She said she doesn't expect it is that way on all the tumors but at least we know its working and the side effects are tolerable, so we can continue. Great news!!! Naomi and I contained ourselves until we got to the parking garage then we both yelled our happy cheering and did a happy dance. By the time I got home my cheeks were aching because of the smiling I did on the 3 hour drive home.
Well, for the most part I just write about all my therapies and there is much more life being lived besides that. When I am in California I am taking walks in the parks with mom and her pups, lots of shopping, beach combing, lunches with friends and family and of course every Friday Mexican Train game with mom and the gang. Mom and I have so much fun together. At Christmas we spend the week setting up her entire house with mini Christmas villages and decorations to the hilt. She still has all the Christmas tree decorations we had when we were young so it is a walk down memory lane when we decorate the giant Christmas tree. When I'm at home I am still working for the school district and loving it and the people I work with. I do have my therapies twice a week and there is usually a friend that goes with me for chat time. Twice a month I go out of town, once for the wound doctor and once for the oncologist at SCCA. I have Naomi and or Janet who always go with me for quality girlfriend time. Last month Janet and I went to the wound doctor and then continued going east to Leavenworth a quaint German town in the mountains. The next morning at breakfast we sat outside enjoying the mountain view as a cut little old man dressed in German shorts and suspenders and a little hat came out on the ledge and blew a 12 foot horn. He played a couple songs, it was the cutest thing. We walked the streets of the decorated town until our legs were aching then sat in the restaurant eating and drinking till our legs were ready to go again. When we got home I was surprised to find that John and Rylan had installed new granite counter tops in the kitchen. How they did that so fast and without me knowing is still a mystery to me. It was the nicest surprise. I enjoy tea time at the Renaissance, a nice little spot overlooking the ocean with a view of Mt. Baker in the distance and the beautiful Canadian mountain range to the left. They specialize in exotic coffees, teas, local cheeses and wine with yummy organic slaws and a crazy variety of grilled cheese sandwiches. I love hanging out their with my friends. Zoe, my grand daughter, is the best cuddlier ever and comes over often to cheer me up and everyone else whose around. lately she always asks me to turn on the computer so we can watch the funny video of "What does the Fox say!!!" We are going to learn the dance together. I walk down to Country Aire (natural food store and restaurant) often to get an organic fresh squeezed juice and/or a cup of homemade soup. I always come home with something yummy and good for me from their grocery store. Melanie and I went there a few weeks ago and she went crazy filling up the basket with hemp products (high in protein) and Kombucha and yummy protein bars. We even got a foot long hemp heart macadamia nut dark chocolate bar. It was so yummy. She said she wanted to make sure I was getting good nutrition while I was getting the chemo. All my friends are always looking out for me, getting me to all my appointments, making sure I have good nutrition and just being there for me any time of the day or night. We take walks, go for bike rides, lunches, shopping or just hang out with me when I feel like just sitting around the house or going for a drive up the mountain roads or around the lakes. John makes sure I am as comfortable and happy as he can make me. I know his heart is breaking for me and he feels so out of control, he just wants to fix me like that's his job, but he can't and that makes him feel helpless. He sometimes goes for a drive to clear his mind, then comes home and bends over backwards to help me and keep me smiling. I have the best kids ever too, anything I ask of them and its done. I love just hanging out with them and listening to all the happenings in their lives or watching a movie or cooking something in the kitchen together, I have pushed exercise and good nutrition on them their whole life and they are now making sure I am doing it for myself. A couple nights a week when I crawl into bed and turn on a previously taped show usually the Waltons, John is there waiting with a bowl of ice cream and one spoon. He lets me sit up with the covers pulled all the way up to my neck so I'm warm and cozy and he takes turns spooning ice cream into both of our mouths. What a nice way to end the day. Life is good and I am a blessed woman!! Cancer does not rule my life as I have determined to live as a well woman and enjoy all that I have been blessed with and because you have chosen to pray for me, God has responded and I have been able to do just that. Thank you!!
DECEMBER 2013
New experience this month....Vertigo...Woke up Thursday morning and was feeling a little light headed but got in the shower and continued getting ready for work. About an hour into work I started feeling very dizzy and it caused me to vomit. With my medical history in mind Chuck (my boss) wasn't taking any chances and called 911 and off to the emergency I go. The doctor on duty was familiar with my case because my son in law Joe is a nurse in the emergency room. She quickly had me down getting a brain scan which thankfully came back normal. She determined it was vertigo gave me meds and sent me home. Janet drove me as Sierra went to fill my prescription. I stayed home and rested but was ready for work on Monday. I had another successful visit with the wound doctor. The wound is continuing to heal and the pain is less. The following week I visited with Dr. Salazar at SCCA and once again looking to see the expression on her face to see if it's going well. She was satisfied with what she saw. She said the healing wound says a lot because the cancer will cause it not to heal and seeing the amount of healing that is taking place is a good sign that the cancer is stabilizing. I was happy to hear that because the tumors are looking their worse and from past experience that is not good. She said that this treatment is different in that it irritates the fast growing cells and that could sometimes cause the tumors to get inflamed and appear as though they are getting worse. Good to know but it still freaks me out to look at them. Walk by Faith not by sight came to mind and so I will rest in that. Next month they will do the needed scans to compare the sites. Please be in prayer for me that all the tumors will have shrunk in size and remission is in my near future.
Christmas was Fabulous!!!! It was the first time in four years that John and I have celebrated with all our children. Debbie, Tony, (Joe's mom and brother) and friends Janet, Demetrius, Mesky and Adam also joined us. Sierra, Joe and Zoe were the perfect hosts. They bought a home this year and wanted to have Christmas in their new home. We had crepes with all the breakfast fixings and Zoe passed out all the presents which we gleefully opened. Zoe got the movie Miracle on 34th Street so we settle in and watched it. Dinner was a yummy Christmas present from my mommy, Honey Baked Ham with all the holiday fixings including prime rib!!! Everything just had to be warmed up, except for the prime rib which Joe slow smoke to perfection. Peace, Joy, Love and Hope is what Christmas has to offer and that is just what we all got to experience.
I await the new year with hope in my heart that it will bring complete healing from the top of my head to the souls of my feet! I pray for a blessed New Year for all of you and thank you for praying for me throughout 2013.
JANUARY 2014
Well I had all the test run to see if after 3 months the new treatment plan is working. We found that the tumors had grown and there is evidence of new tumors. One of the great things so far is that through all this it has not spread to any of the organs. This time however it did reveal a couple spots on the lungs and liver and a tiny spot on the right side of the brain. This changes how we can treat this. There is a tumor that is causing some pain so we are going to address this first, which means traveling to California once again. I will be leaving February 9th and have an appointment with Dr. Syed on the 10th. There are options of Hyperthermia, Brachey radiation, Hyperbaric chamber (I'm sure I miss-spelled all of those) and they are all in the same hospital which makes it very convenient. Since there is evidence in the organs I do need to be on chemo. When they did a chemo sensitivity test on the tumor that was removed it showed it to be sensitive to 5-FU and the oral chemo to that is called Xeloda, so they started me on that right away. Dr. Kummet said he has quite a few clients on it that have liver and lung spots and they are responding very well. So please get your prayer partners in hand and start up the powerful prayers that have gotten me through to this point!
FEBRUARY 2014
Well I'm at mom's house now and we went to my doctor appointment on Monday the 10th, it was so nice to see Dr. Syed again and as usual he was getting everyone together to start my treatments. He is concerned of the many tumors and said they have to be treated differently because of the placement of them so he will be working on a treatment plan for those. The ones he does know what to do with he immediately started working on and said Wednesday I would come in at 8am to start treatment on the lower chest tumors with radiation and hyperthermia and the following Wednesday I would go in for surgery to get the tube implants for brachey radiation and I would begin that treatment the same day on the back tumor, upper chest and neck. The problem for me will be laying on the table for an hour, as the back tumor is effecting the muscle and nerves and causing a lot of pain in my back and I can't stay in any position for any length of time. It keeps me up all night and I am getting very weary and dealing with pain all day and night is not fun so I really hope the brachey works fast. Next Wednesday seems like forever right now. He said he will be looking into radiation on the entire brain since this is the second tumor on the brain and there may be some others that don't show up on the scan yet. We are hoping the Chemo I am on will be working on the lungs and liver. Much prayer needed for my sanity, pain and attitude and that the doctors will come up with the perfect treatment plan to rid my entire body of this yuck. Another birthday will come and go on the 26th and I will have ONO and Scallops Parmesan my most favorite Shushi at Mahe's Restaurant.
MARCH 2014
This month has been a whirlwind. My Birthday was fun and I did get my yummy Shushi!! But the most incredible thing to happen was I have another Ginger grand daughter, Keilawni May Frazier born 3/21 at 6:36am 7lbs 2oz 20inches of sweet, gorgeousness cuddles and knowing that is what I have to look forward to helps me to stay in the right frame of mind in getting this good and done.
Brachey radiation was done on my side and partial back with 8 tubes and my neck with 7 tubes. I had 10 treatments my first on the day of radiation then 2 a day for the next week ending with 1 on the last Wednesday. It was very successful.
They decided on using the CyberKnife radiation to pinpoint the tumor and rid it with minimal to no effect to the other brain cells. I went in to get fitted with a mask that would keep my head completely still while they treated the 2 areas. They use a medium gage mesh plastic sheet 2ft X 1ft and warm it up in a large pan of water until it is pliable, then they lay me on my back on a table and stretch the plastic sheet over my face and strap it down till if forms my profile and hardens.
4 treatments on the brain, and each session is aprox 45 min to and hour. I certainly don't recommend this for the claustrophobic. I am not, but, the entire time I was strapped down I wanted to rip that mask off and smash it against the wall. LOL So glad there were only 4 treatments.
The day after my last treatment they had me right back into radiation treatment on the upper right chest and partial lower right neck.
APRIL 2014
Radiation five days a week at 9am it takes about a 20-30 minutes then they put me in Hypethermia treatment for an hour right after radiation on Monday, Wednesday and Friday. On Monday after Hypethermia I have Chemotherapy for about an hour and a half and on Wednesday after Hyperthermia I have a vita C infusion which takes 2 hours. Weekends I get to rest from it all and get ready to start up again on Monday. I have been experiencing shortness of breath for about a month and 1/2 and it got pretty bad while at Radiation so the doctor admitted me into the hospital. That was Wednesday 16th. They started running test after test for the rest of the day into the evening and the next morning they started up again at 7am.
All the tests came back good accept for the CT scan on the lungs. It showed suspicious shadows that were not allowing my lungs to take in enough oxygen to sustain me. I couldn't even climb a flight of stair without having to sit and catch my breath for 10 mins afterwards. They were suppose to have a specialist come in the next day so I was kept over night again. The lung specialist never came in the next day. But the nurse worked all day switching around my pain meds trying to get it under control with a strict written schedule so I can keep on top of it and hopefully experience less or no pain. That would make me very very happy. Then if they can get the breathing regulated I can get back to my treatments. My oncologist came in and said after looking everything over he was very concerned about the lungs as it may be cancer related so he may have to get me on a new more aggressive chemo to get my breathing under control if that is the case. They have to still get the specialist in here. I am on oxygen all day long now and still can't walk across the room without having to sit down for 5-10 mins to re cooperate.
I trust you Lord and I know that no one loves me like You do, so I want to know Your plan and ask that You show me how I can be totally involved because that gives me a cheerful heart and You say in Proverbs 17:22 A cheerful heart is good medicine, but a downcast spirit dries up the bones.
MORE APRIL
I ended up in the hospital for 11 days. Hospital food... not much good you could say about that except if you want to lose weight, and I did 12 pounds, ouch, I needed to be gaining weight so mom has been busy making yummy fatty foods to help me out. While there they found 3 things to address: #1. Slight lung infection, which they pumped me up with antibiotics to fix and it worked but didn't fix it completely because of problem #2. Slight damage due to excessive radiation, which they pumped me up with steroids help out that situation. Radiation was needed to help combat problem #3 cancer in surrounding area. They starting me on a new chemo in hopes it will respond quickly to. Also they addressed the pain issue I was having. I can certainly see how people in pain get addicted to pain meds. They have this one called Dilaudid that they give in the IV and it is instant relief followed by a warm good feeling. They kept me mostly on that as they addressed all the other issues then the last 2 days arranged a timed mixture of Oxycotin and Oxycodone oral medication so I could do it myself at home, so far so good and what a relief, the pain was hard for me to deal with on a daily bases. They started up the new chemo so be praying it is stronger then the cancer. I am still on oxygen about 75% of the day and part of it is because it is real good for cell rejuvenation and other healing properties, but it is still necessary. They are hoping to get me into hyperbarics soon. It is still one day at a time and I am missing home sweet home. My incredible daughter and son in law has funded a trip for 5 to come for a visit and and in 2 days I will be hugging Sierra, Joe, Zoe, John and Mariah. I am the most excited I have been in months,
Thank you
God... What can I say ... Your the bomb!!
John you are the man of my dreams. We have been though the unimaginable and when I look into your baby blues my heart still melts. Thank you for your love that held me up to face each day with a new hope.
Sierra, Joe, Ross, Rylan, Mariah, Zoe you have been a great emotional and caring support to me and I love each of you in the biggest way I know how. I am so blessed to have you as my family.
Naomi and Janet you two have been my stronghold, your support and love has carried me through so much. I could not of done any of this without you by my side. We've traveled miles and miles with tears and smiles. When I grow up I want to be just like you.
Sharon, Marsha, Ed, Sierra, Naomi, Janet, Karol, Jan, John, Laurie, Jim, Bertha, Annie, Wade, Hillcrest Church Family & Super Cool Friends, for the yummy Spaghetti Luau fund raiser. I know much appreciated love, time, and energy went into planning this to make it happen. You are all amazing. It was an awesome good time!!!!
Hillary, Marianna, Nancy, Ann, Colleen and Stevens Middle School staff for coming together and funding my home coming for the new year I was happy to be here for the month of January and enjoyed spending time with my family and friends before having to return in February to run all the necessary tests. Evelyn, Jan, Debbie, Paula and Kathy for sharing sick leave hours so I can do all this and just concentrate on healing with out worrying about my finances. Stevens Staff & Students for the fundraiser baskets. Soooooo thoughtful of you!
Rachael & staff and the leadership class at the High School. I am so excited to see what I know will be the best talent show ever! But what I am most impressed at are your incredible hearts. I know putting on this fund raiser event takes much work and I am awed by your leadership skills and the selfless attitude it takes to make this happen.
Mary, Claire, Walter, Sally, Lily, Maggie, Karen, Chuck, Ariel for listening to God all the way in Oklahoma and making sure I had the naturalistic medicines that my insurance doesn't cover.
John & Janna, Sandy & Clayton, Janette the Kangen water did all we hoped it would do. And I love building new friendships.
Pastor Jeremy thanks for keeping our vehicles in excellent working order. I love hanging out talking about all the ways our Daddy has blessed us through our crazy life. He is so creative isn't He!
Joey can you believe those cards sold for so much?!?! How cool is that!! Well its very cool, but not as cool as you!!!
I love you man!!! This was so unexpected and you are amazing! Thanks for doing the ebay selling son!
Robert, Melanie and the Domino's Pizza gang, you guys are amazing, thank you so much for caring so much about my needs and pulling together to support. And Melanie I am stronger me because of all the nutrition you stuffed me with. Thank you my sweet friend.
Anonymous givers that gifted to me at the most remarkable financial perfect timings ever. You are incredible. I've been saving hugs for you, Big ones!!!!
Emma and Janet you did a fabulous job putting this website together. Thanks for helping me share my story.
Mom & Bob, I could not have gone through those therapies or any of this without you. Thank you for letting me be your little girl again and creating an atmosphere that allowed me to stay strong and heal. I love you so much mommy you are so strong and full of encouragement for me. I imagined how it would feel to be in your shoes going through this with your daughter. I know I can deal pretty well with things that have to do with me, but my emotional state changes drastically when I have to deal with the concerns of my children. I know there were many nights you lay in bed crying and when day time came you were up early getting ready to make my day the best it could be. I am blessed to have your unconditional love. I wish everyone had a mom like you to go through all this with...You should make a business doing this...LOL...Lia told me. Melia you always keep me laughing and that is the best medicine.
Port Angeles residents. Living in this small town and watching you all rally together to make sure one of your own didn't fall through the cracks has been one of the most incredible and humbling experiences I have ever had. I promise to pay it forward with the longer life you all have helped me to achieve.
I know there are loved ones I haven't remembered yet (chemo brain's fault) I will add you in as you come to mind.
So much more I could say about my fabulous friends & family, you know how much I love you and appreciate all you have done.