Headed for a challenging 2025 with Bone Marrow Transplant

 Well, the good news is I am in remission for the first time since being diagnosed nearly 8 years ago. I was to have 6 sessions of chemotherapy since beginning in July. I feel, looking back, that the 1st 1 - 3 sessions did many positive things. I no longer have high blood pressure, which they told me could improve with chemo and immunotherapy treatment. All the swelling of lymph nodes went down and all the inflammation I had in my neck, legs, feet, wrists, etc.... went down. I've lost 45 lbs, much of which was inflammation, I am certain. I lost my desire for sweets, wine, and big meals which has undoubtedly contributed to the weight loss. On the other hand, I often don't feel great and I have pretty significant neuropathy in my fingers and toes and left food. The 4th chemo session was so easy that I have joked that I wonder if they even gave me any drugs. My white blood cell count did plummet again, making it necessary for me to isolate for 10 days until it recovered. The 5th chemo was very tough, however. I felt really bad for a full 2.5 weeks afterward, making preparations for the holidays really tough. 

From the beginning, the doctors have wanted me to treat the t-cell lymphoma with chemo, get into remission, and then do a bone marrow transplant. The statistics at the beginning gave me about a 19% chance of "cure," or to still be in remission in 5 years. The remaining 81% relapse before that time, after having gone through all that treatment entails. It didn't make sense to me in light of the other options I was learning about. I was disciplined and hopeful that I could use alternative options for the first couple years. I've always said I am a sprinter rather than a marathoner. Gradually I let go of trying so hard and just lived my life, especially since moving to Colorado. I have had to learn to pace myself better than when I was younger but, in general, I've lived a healthy happy life except for having cancer, until Dec. of 2023. That's when the lymphoma really took off and I knew it was time to look for options again. 

I improved enough to enjoy having a dear friend visit for Jan. of 2024. But then my neck swelled up again and the general feeling of being unwell took over. That's when I met with Dr. Haverkos about the clinical trial, which didn't work for me. 

Beginning in July, I started chemo, leading up to this last Thursday when I anxiously met with Dr. Haverkos again, the T-cell lymphoma expert for University of Colorado Health. He urged us to consider bone marrow transplant. I have responded really well to chemo and immunotherapy therapy and most people don't respond as well subsequently. The stats now show I have a 50% chance of "cure," or being in remission in 5 years. The other 50% would need more treatment. I'm on the young side as most people with AITL are older men who don't tolerate the transplant as well. He said he felt I am a great candidate for "never having to see him again." 

He also let me off the hook for chemo #6, thankfully, allowing for a much nicer Christmas and New Years! 

I have over a dozen appointments before Jan. 10, when I am scheduled to be admitted. Today I met with a social worker and dietitian, both from the hospital. They, along with my regular oncologist, have all said similar things that has me a bit taken aback today, "The time in the hospital will be very rough; you will have to work to eat and if you lose weight, you'll be on a feeding tube. The next two months will be in a hotel near the hospital during which I can't be left alone, can't be in public or leave a 30 mile radius, and still can't be with my grandkids. It will be 6 months until I feel human and a year before I feel like myself again. I was geared up for 3 months. Now I need to prep for 6 months to a year. I am feeling a bit overwhelmed. 

I know I will get back to thinking one day at a time and I have many tools to help me. For this moment, I am in a bit of disbelief about it all. I try not to blame myself for my lack of self-discipline that may have helped manage this. On the other hand, I have learned that I need to be compassionate with myself and I just may have been doing the best I could with trying to just life my life. Of course the answer is somewhere in between.