Cayci's Medical Fund
Hello everyone! I am Cayci, a 31 year old who is fighting Hodgkins Lymphoma for the 4th time in 4 years. This is my 5th battle with cancer since 2011.
My cancer story actually starts on a high-note! I married my husband Luke in April 2011. We were in Vegas and Elvis sang me down the aisle. Afterwards we celebrated our anniversary in Australia for a week. About a month after getting home I was at my computer at work and I felt a hard lump at the base of my neck. I called my doctor and within a few days was told I had a growth on my thyroid and it needed to come out. So in June 2011, 4 days after my 28th birthday, I had a complete thyroidectomy. One week later the lump was still there, at my followup appointment my surgeon said that it was most likely swelling and that they had taken a biopsy of my thyroid and it came back that I had Thyroid Cancer.
My Surgeon said it wasn't a big deal but I needed to see a Radiologist for follow-up. I was recommended to the best Radiologist in town, upon meeting him he asked me "Cayci, why do you have enlarged lymph nodes in your chest?". I looked at him like he had two heads! I said "I don't, maybe you should check your information to see if you have the right person." I know my tone of voice was not at all friendly. He was kind to me and said he would double check. The next day he verified those were indeed my scans and he wanted to know why my lymph nodes were enlarged before we would attempt any treatment for my Thyroid Cancer.
Within the next month I had met an oncologist, given several dozen vials of blood, had a Bone Marrow Biopsy (while awake...not fun), had a chest biopsy (still awake for this one...), a port-a-cath insertion into my chest, and ultimately another biopsy in my neck at the initial site where I felt the lump. In August 2011 I was diagnosed with Hodgkins Lymphoma, Stage 2A.
At this point I looked good, felt good, and was in good spirits so I had no concerns about going through treatment. I was invincible! Thankfully my Oncologist recommended fertility treatments before chemotherapy. With the financial help of Fertile Hope (through LIVESTRONG) and my parents, my husband and I went through 2-3 weeks of fertility treatments and ended up with 7 embryos that are frozen and ready for us. My parents call them their "grandsicles"!
The week after fertility treatments I started ABVD chemotherapy. Every other week I traveled to the Cancer Center for a 6 hour day of treatment. It wasn't fun but I got to spend time with my parents, eat yummy food (when I had the appetite) and joke about the weird side affects of the chemo (like peeing red for a few hours, we made lots of vampire jokes about that).
Before treatment I had cut off my long, blonde curly hair and donated it to Locks of Love. My husband and I also purchased our first home, we worked so hard to get it.
During treatment I lost about 80% of the hair that I had left. I was pretty pale, very lethargic, but had minimal side effects other than hair loss, low energy, and a sore mouth here and there. My employer was very supportive in the beginning with my therapy, however after 2 months of me missing work for treatments, appointments, and one hospital stay for a blood clot, they changed their mind and let me go. I was working so hard to keep our life stable; working full-time, settling into a new home, we had only been married 6 months! The loss of my job was heartbreaking.
Thankfully after 2 cycles of chemotherapy I was considered in remission. So I finished the last 2 cycles and was done with treatment. My Doctor and I decided not to do radiation and so treatment was over for me!
Three months after my last chemo I had a follow-up PET Scan, it was in March 2012. It showed some uptake in my initial site of concern, the lymph node in my neck. After an ultrasound and biopsy (awake for again...) I was diagnosed with a recurrence of my Hodgkins Lymphoma.
My Oncologist didn't want me to do more chemo so he sent me directly to Radiology. I was able to see the local Radiologist here in my town and was able to go through about 3-4 weeks of radiation. The worst part of Radiation was being fitted for my radiation mask. It was the worst experience of my life, and I had my first anxiety attack during the whole process. It also made me Claustrophobic, which I had never been before. Thankfully (3 years later) I am almost over my fear of small spaces and confinement. After the radiation I was considered to be in remission again.
The next year for me was spent forming a new life, I didn't really fit back into the old one. I had horrible short-term memory, my recall was poor, and I couldn't do any critical thinking. So my previous job as a Bookkeeper was completely out of reach. So I decided to work from home and I started my little business, The Natural Fighter. I make handmade soaps, creams, and salves. Healthy ingredients, safe for everyone. I became a member of my local Farmers Market and started a small online shop as well. It was fun and I enjoyed the creativity, it really helped me heal.
My 1 year follow-up, July 2013, I had a follow-up CT Scan that showed some enlarged lymph nodes...again. After a failed biopsy, my Oncologist said it was time for more chemo and then an Autologous Stem Cell Transplant.
I decided to visit the Cancer Treatment Center of America in Chicago, IL for my second opinion. They were able to get a biopsy and confirmed my recurrence.
So in August 2013 I started the ICE Chemotherapy regime. After 1 cycle I lost all of my hair....again. Thankfully after that cycle I was considered to be in remission. I finished the last cycle in September. In October I had my Stem Cell harvest, it took 3 days and I got 2.2 million stem cells harvested.
Later that month I had my high-dose chemotherapy. The rule was I would have to be in the city everyday and night, and I had to have an adult with me all day, 24/7. I wouldn't be able to go home for a month. That was tough, missing the comfort of my home, my pets, and my husband (not necessarily in that order) was more than I had anticipated.
High-dose Chemo was 5, 8 hour days and I ended up in the hospital on Halloween night due to a bad reaction to Etoposide. The chemo was thick, like syrup. Had to be in a glass bottle because it was so volatile. It had a side-effect of dropping blood pressure and that's exactly what it did to me. My BP was so low it wouldn't register on the machine, so I got a free ride to the hospital for the night. The next morning I felt better, still had low blood pressure, and I thought maybe I would have the next day off. But nope, cancer waits for no one! I was wheeled back to the chemotherapy center and finished my last 8 hour day.
The next week I had my Stem Cells given back to me and I went to the Cancer Center daily for blood tests and monitoring. I still had to have a person with me 24/7, I was never alone. If I got a fever or was sick, I had to have someone available to me. After that week I took a turn for the worst. I felt horrible, started having a bleeding problem, and my blood pressure was dropping again. So I ended up in the hospital for another week. During that week I received multiple blood and platelet transfusions, and my immune sytem was starting to rebuild. I was feeling better. I ended up getting to home a few days ahead of schedule on Nov 22, 2013. I was able to be by myself for the first time in 1 month and I drove myself home. It was scary but so empowering. I was still very bald but I was a fighter and a survivor. I finally had felt like I was over it, no more cancer, just a long and happy life. I felt like the coolest 30 year old ever ☺
2014 was such a change for me. I revamped even more with my health. Healthier food, exercise, my brain was coming back, and my little business was booming. I felt great, better than even before cancer. I had a couple questionable moments in my follow-up scans but it was never anything serious. 10 months later a follow-up CT Scan showed enlargement of two lymph nodes. This was totally out of the blue. I had a biopsy later that month (still awake....), and it confirmed another recurrence. This was my 4th Hodgkins Lymphoma batter, and my 5th cancer battle overall.
My Oncologist has me scheduled to go through more chemotherapy and then a Bone Marrow Transplant, hopefully an allogenic with one of my sisters being a donor.
However I realized that the chemotherapy/radiation/surgery route isn't working for me. While I do believe in this therapy, I also realize there are many more facets of my health that aren't being evaluated. So I started doing more and more research and the Riordan Clinic had my answers.
The Riordan Clinic that has extensive testing and therapies that may be able to find out what is going on in my body and with my immune system, and why it's letting my cancer keep coming back. This clinic is willing to help me and dig deep into the "whys" as to my recurrent cancer. I have never had a doctor(s) willing to go the extra mile to save me. This place will.
My husband, Luke, and I haven't asked for much during this journey. We have been through hell and back, and we have never given up. Even when times are tough and relentless, we keep moving forward. But we need help with this, we have got to get me to this clinic. Because really, my life and our future depends on it.
If you feel moved to help us, please do. We would appreciate anything you are willing to give. If you can't make a monetary donation then please send us good thoughts and keep us in your prayers.
We love and appreciate everyone helping us! Love to all!
To your health,
Cayci & Luke
