Even though I'm a Gemini...haha!
So right…I got this EBV [Epstein Barr Virus] from my new pancreas [the donor]. 95% of us have the virus, but again I was rare or abnormal…ha-ha! I was among the 5% of us that do not have it. It is so common of a virus that they never checked the donor pancreas for it. My mom told the doctors even though it’s too late for us, they should begin checking all donors and recipients to see if they are EBV+ or EBV-. And I of course agreed. The doctors also agreed, so hopefully in the future this won’t reoccur. EBV causes Mononucleosis or Mono [the kissing disease]. However, since my immune system is so suppressed, it couldn’t fight the Mono off. I never got it though. It had developed 5 enlarged lymph nodes instead. They found one under each arm, one by each groin, and one by my bladder. They found them from the CT scan that they had taken a day earlier. Then they did a biopsy of the most superficial [the largest] one under my left arm. The doctor called me on Monday morning the 21st, as we were on our way down to Rochester to see my kidney/pancreas team doctors. He told me that from the biopsy they had taken that they found PTLD [Post Transplant Lympho-proliferative Disorder (not too sure if that’s how it’s spelled but whatever)]. It is where the bad cells [lymph] reproduce too quickly [proliferating]. Lymphoma is another word for Cancer, as I’m sure you know…but maybe not. Ha-ha! You know I can’t be too serious for very long, but that’s actually a really good thing because my sense of humor has gotten me through a LOT of shitty times! Thank the Lord, huh? J My doctor told me that we [meaning my parents, but basically him and I] have three options: 1) Reduce immunosuppressive drugs [take away Cellcept—covers immune system, reduce Prograff—protects the transplanted organ, and increase the Prednisone—steroids to help fight off infections], 2) a treatment called Rituxan—an intravenous [IV] medicine that goes directly after the bad cells, or 3) Chemotherapy—injections or intravenously given that go after all of the rapidly producing cells [reason why some people lose their hair]. But the doctor didn’t recommend Chemo for me because of my age, strength, ability, and where I’m at with my life. Chemo makes a person drowsy also, and with the transplant and proceeding operations I need to learn how to rest the way it is. J With Rituxan there are no side effects, except during the treatments. There are four treatments once a week. He recommended this and the first option. It sounded pretty good to me too with an 80% chance of it working. However with the Prograff reduced so much, there is a 50% chance that I’ll keep my pancreas without it rejecting. But even if I do lose the pancreas, they told me that I can get another and the lymphoma will not be as susceptible to come back. I’m very optimistic that if I’m able to get past this, I should be getting to the end of my problems. I feel Cancer is about the worst it can get, so when I beat it…hopefully my life will turn around. Even if I so-called lose the battle, I still won because I’ve inspired a great deal of people! Any questions please e-mail me back. Hugs, kisses, and lots of shakes! J Cassy
And on November 22, 2006 my tests came back ALL NEGATIVE telling me that I was in remission and ALL CLEAR from that Cancer!!! So I won! :) And I've beaten the deadliest disease, along with another deadly diseas...however treatable, I couldn't live with it though.
