Progressive Hodgkin’s Lymphoma
I was diagnosed with Lymphoma on Guam in May 2005. The byopsy was inconclusive for getting the exact type of cancer cell I was dealing with. My parents live in Phoenix, AZ. Dad researched all the hospitals in the area and found that Virginia Piper Cancer Research Center had the most experience with Hodgkin's Lymphoma. We were able to get an appointment with Dr. Kato immediately on June 15th, 2005.
My Hodgkin’s Lymphoma actually grew during what is known as the CURE. After 7 ABVD chemo treatments, a CT was done. I got a call from Dr. Kato saying don’t come in for chemo. I suggested I come in and get chemo anyway until a new plan to be formed. Dr. Kato said “IT’S NOT WORKING” and we want to give your body a break to be ready for the next step.
So, I said, “Since you are calling me, what’s your plan B?” He said more and harder Chemo to get ready for Bone Marrow Transplant. I was referred to City of Hope, Samaritan, Phoenix. Dr. Alvarnas was great. I wanted to jump to the hardest chemo my body could take to get the cancer. I did very well with the ABVD. I had very little reaction. The Dr.’s discussed it and agreed with me so then I was scheduled for ICE. It is given over 48 hours in the hospital, and then 4 to 5 weeks until my blood numbers come back up.
3 weeks after the second ICE chemo a PET scan was done and it was clear! So wow, I was so excited. I figured that I would only have to have 2 more ICE chemo and I’d be done. When I went back to Dr.Kato and asked, he dropped his head and shook it no. He said I would have to have Bone Marrow and that I might need 2 bone marrow treatments!
I had one more ICE treatment 3 days before Christmas. That was my 3rd ICE treatment. Then on January 4, 2006, I had to go to the emergency room. I had a small bite on my upper leg that got infected; causing my lymph nodes to swell so much the Dr.s thought I needed surgery. I was admitted and stayed in the hospital for a week.
At the same time, I was receiving growth hormone shots to stimulate stem cell production. I started with one shot, and then was switched to 2 times a day. On the last day of that hospital stay, I was connected to a machine that harvests the stem cells out of my blood. We were able to collect almost 6 million cells in one sitting. The process is not painful in any way. It is much like dialysis, except it is collecting new stem cells. Because I was able to do this, I did not have a donor.
I was still clear of cancer, which allowed me to have just one bone marrow transplant instead of two. Everything went very smoothly and I was out of the hospital 11 days after my transplant! Because I was able to use my own cells, recovery was very smooth and easy. The challenge is to do what I can and rest when I need it.
It is now September 28, 2006 and I am doing very well. My scan was all CLEAR of cancer! I do have 2 nodes in my thyroid that showed up this time. We will wait 30 days and take another blood test to check thyroid levels. Also we are watching my sed rate which is 50. It is supposed to be 0 to 20. I still have my portacath in place and the hickman port was removed just days after leaving the hospital.
There is also more to this situation which complicated everything. My medical insurance company quadrupled the rates for the renewal and therefore, my company had to change insurance companies. In that change, Bone Marrow Transplant was not covered. On November 10th, I was told that the payment plan for bone marrow is: $150000 in the hospital account prior to starting the bone marrow process. $150,000 up front! This is the “payment plan”. It was Marvin and my 21st anniversary too! I had to call Marvin in Honolulu to let him know what was up. For the next 2 weeks, he got a line of credit, and my parents and his parents transferred funds to the hospital. This allowed the process to start.
In the meantime, fundraising through National Foundation for Transplants began. We had events and letters in both Guam and Phoenix. It was very successful and covered almost all of the needed funds for the transplant. www.transplants.org is the website if you are having any organ or bone marrow transplant. They can help with living expenses, airfare, and even the bills when you do your own fundraising. That way you do not have to pay taxes on the donations. They keep 5% of the fundraising for their expenses. They were great to work with.
Thank you for reading my entire story. If you have any questions about what I went through email me or call. I’ll help in anyway I can.
All my best