March 18, 2015-It’s hard to imagine that in just a few short weeks, it will be the four-year anniversary of being diagnosed and the nine-year anniversary of my entire world being rocked. It had been a five-year span of multiple diagnoses and toxic drugs and treatment plans. Then came the diagnosis and the master treatment plan, the plan I have dedicated my heart and soul to each and every passing day. A part of me is better, but a bigger part is still not the person that I need to be. I have continued to search for a better way and a better life. While on the journey, so much has occurred that I will share as I continue to blog. I have found great comfort in my relationship with the Thurlow family, especially my Running Partner, Nick. On April 14, 2015, I will return to see a Bone Marrow Transplant Doctor. I was promised that there would be something new to offer me. I was promised that I would have to wait until spring. My bags are packed, and I’m ready to go. I hope that the doctors are ready for me!
Fall 2008-I was confronted with probably one of the most difficult questions I would ever have to answer. It always seemed as though it would be such an easy decision to make, but when reality struck, there were many factors to consider. I always believed it was as easy as “ashes to ashes, dust to dust” and the ground would be my final resting place. However, times had changed, there were other options available, and many of my family members and family friends were choosing a different final destination. Many family members had purchased shelves to find peace and comfort in. My parents decided they would opt for this and wanted to purchase several shelves near each other. I was really torn about this decision and in a sense did not really make a decision nor did I object to it either. I ultimately decided I would be okay with going into a mausoleum. I thought if my time would have to come prematurely and long before it should really come, I was comforted by the thought of having my grandparents, my aunts and good family friends nearby. I felt we would once again be reunited in a different place at a different time.
October 2008- It was Halloween. My son went trick-or-treating with his two friends on the block and around the corner. I basically stood outside on my front porch talking to one of my girlfriends and monitoring the situation. All of a sudden, my son came running back to the house with his two friends yelling. He said, “Mommy, W called you a bald, freaky asshole.” I told him not to worry about it, but I was heartbroken inside. Luckily, the incident did not really put a damper on his day. I knew this whole process would eventually lead to cruel, insensitive behavior. I would not have expected anything less. Thankfully, this was one of our first bouts.
Fall 2008- The two infusions were completed, but my disease course was not being altered. I would not give up determination or hope. I knew something was horribly wrong. You just know your own body and know when things are not right. I continued taking the methotrexate but really doubted its effectiveness. What would be my next course of action? I applied to Northwestern University to have my case reviewed for a possible stem cell transplant. I desperately tried to be accepted into Memorial Sloan Kettering under hematology. It often took weeks or months for files to be reviewed or to receive a response, and on days, my heart would drop every time the phone rang. I consulted with yet another Rheumatologist in NYC who was empathetic towards my situation. We reviewed my case and discussed all of the previously failed therapies. He wanted to consult with some other specialists but was considering putting me on an immunomodulator called Cellcept. Of course, I anxiously awaited his decision, because I was eager to try anything with just one glimmer of hope. It was decided that I would stop the methotrexate and begin taking the Cellcept. This was another drug that would need to build up in your system before you could determine the effectiveness of it. I was cautiously hopeful but quite honestly, somewhat doubtful. It did not appear that the Rituxan had worked either. The whole process had become painstakingly nerve-wracking, but I was determined to win. I often said to myself that “I will not give up, and I am going to turn this son of a b—- around.”
December 2008-I gradually began the Cellcept and built up to the recommended dosage over the course of a few weeks. Once again, I was back to the lab for weekly blood drawings. My CD19 and CD20 counts were also checked. My CD19 count was at zero, but I was told that is to be expected after the Rituxan treatments and can sometimes take months to regenerate.
Winter 2008-2009-Things remained status quo. I continued taking Cellcept and had reached my target dosage. I wondered whether or not it was working. I saw some very subtle changes in my nail beds, as at one point, I was close to losing them. “I am not done”, and as previously mentioned, I continue to persevere.
February 2009-Memorial Sloan Kettering could not help me, but the doctor who reviewed my case referred me to an Immunologist in NYC. I had to wait several weeks for that appointment and counted the days. I was grateful that there were at least some TV programs to look forward to watching in the evenings. It helped me to break up the time into smaller fragments.
March 2009-My husband was violently ill with the flu, but my parents and husband all went to the consultation with the Immunologist. We were extremely excited and thrilled and felt she would be the doctor that would ultimately help me. After all, she was given rave reviews. We were there for close to 4 hours. I always came prepared with a lunch box full of food in case I was in need of anything. She reviewed my stack of records but not without numerous interruptions and coming in and out of the examination room. She knew my case was quite complex and must review it more carefully. She decided to order more specialized lab work. I went to the lab the next day and again anxiously awaited the results. Again, my CD19 count was at zero. Could this still be, or rather should I ask should this still be? Why weren’t the levels bouncing back? The last infusion was in August 2008, and the Rituxan was certainly not beneficial. The doctor questioned the level on the lab report but did nothing to follow-up with me. It was decided that she could not help me any further and would simply just mail me her consultation report in the mail. I knew I was only one patient and an extremely complex one at that, but I questioned why so many doctors had given up so easily.
Written by Tara Notrica