Editor: We are glad to have some very good news to relay to you from our guest writer who has Hemophilia A and an array of related illnesses, including Hepatocellular Carcinoma. We’ll allow him to tell you in his own words.
“I approach the sixth, and perhaps final, episode of the story of my battles with hemophilia A, HIV, hepatitis C and hepatocellular carcinoma with a feeling of hopefulness and a level of comfort with my health-related struggles that has been absent for the last several years. My second to last meeting with my oncology team was very positive. The Lenvima seems to be doing a good job with only the slightest signs of life in any of the tumors, clear lungs, and in general a feeling that I’ve reached a routine maintenance mode with the carcinoma.
“During this visit I had some very interesting questions to which I wanted to have answers, and I got them. Positive answers. Good answers. The primary question was, ‘Have I reached a point in my treatment for cancer that I can make a big change in my life. I want to move 600 miles away from my current home into another treatment area all together.’ When I explained why, I received the answer that my treatment was stable and that this was the best time for such a move.
“I also met with my hemophilia treatment center staff by phone with the same question and received an answer that transferring my treatment would be no problem at all and they congratulated me. That evening I received a phone call that I had been expecting but dreading. My long-time girlfriend’s mother had passed away. This good lady had suffered from dementia in excess of eight years, and had wasted away to a shadow of herself, and was suffering physically with many of the end-stage issues that are common to dementia patients.
“That night, the night after my oncology visit, I drove all night to get to my girlfriend’s house to help with funeral plans and to deal with the aftermath of that loss. She had cared for her mother for the last eight years and stayed with her until the bitter end, something that I can’t help but admire. She was deeply saddened by the death, but also relieved because her mother had been suffering needlessly.
“I stayed with her for the month of December, and I asked her children if it would be okay if I asked their mother to marry me. They agreed that it would be a good idea and accepted my proposal. The next step was fantastic: I took a knee (quite a feat for a hemophiliac with hemophilic arthropathy in both knees and ankles!) and proposed to the good lady. She accepted. (Yay!)
“We were married with little fanfare, but much contentment on the 28th of December. I am now almost completely moved into our home, with just a few items left to bring the 600 miles from my home. Anyone want to buy a piano? (LOL) So my life has changed dramatically, not because of hepatocellular carcinoma, but in spite of it. Hopefully the situation stays stable, but I have already established relationships with new oncologists, hematologists and my new family doctor.
“One thing I would definitely advise anyone thinking of making a big life change is to get your medical team involved so that there are no unpleasant surprises. My teams are excellent in their care, and I feel so much better having arranged everything ahead of time.
“By the way, I had one more visit with my ‘old’ oncologist in the middle of January. The tumors are all quiet with no remaining signs of life. The lungs remain clear. My Lenvima dose seems to be doing the job and keeping everything under control. The Hemlibra that I use to treat my bleeding prophylactically has kept me from bleeding due to the Lenvima, but I have continued to need occasional treatment with Eloctate, my clotting factor, because of other bleeding.
“I hope this journal has benefitted you in some way. It has been good for me to write about my experiences, and I have enjoyed the outlet. I wish healthy living to all of you.”