Other than that, life is still pretty slow. And no matter what I do I always have dark circles around my eyes. But I've been doing a lot better mentally, which is wonderful. I think the combination of coming down off the steroids (remember when I said it didn't seem to be having any side-effects? ha. ha.) and upping the Remeron (a drug that I'm taking for a few different reasons, but one use is for anti-depression) helped level out my mood swings and general sad feeling. Also, the days are getting longer, and I've been exercising daily on our new exercise bike. In addition, Marie and I are registering for a Young Adult Cancer Conference at the end of March at Dana Farber. So, that should be interesting/insightful/encouraging/hopefully.
As far as updates go, at my next appointment (Feb 28), it will have been my first whole month without any trips to the hospital! (so here's to hoping that I don't get sick before then!) My doctor said that at our next appointment we may be able to start tapering my anti-rejection meds. This means we'll begin to allow the transplanted immune system work on its own in my body, hoping that we've given it enough time to become adjusted to its new home. We'll lower it just a little at first, and go from there. What we'll be looking for is any signs of GvH (graft-versus-host disease: the immune system attacking my body), which can show itself in various ways. Strangely enough, studies seem to show that having a little GvH may actually be a good thing; that cases in which the patient presented signs of GvH seemed to be more successful than those without. It shows that the immune system is strong and fighting, and cancer is less likely to return.
So, I have mixed emotions about it. We don't want too much GvH, because 1) it can be very dangerous (attacking vital organs), and 2) it can mean the mismatched transplant is a failure. I don't even know what we'd do then... (The HLA match that the registry found for me was a 5/6 match, so technically 'mismatched'- but my doctors felt it was enough to proceed with the transplant) I'm trying to not get too worried about it, but I am nervous because it is something that I cannot control in the least. Most people have a some understanding of how their immune system works: the ways in which they get sick, how long they're usually sick for, how to treat themselves. I have no idea about my immune system. I just hope it doesn't start attacking the rest of my body. I don't know if I'll be more sickly now than I ever was before I was diagnosed. It's likely that I'll need to take some form of anti-rejection drug for the rest of my life. A lot will depend on how I react to tapering the drugs. If GvH flares up, we'll have to raise the anti-rejection prescription again and, I guess, wait longer.
I've been thinking about the year that led up to my diagnosis. I got sick a few times that year, and I mean, really sick. Sick in ways I had never experienced: full body aches so terrible that I had to slowly crawl across the floor to my bed and sleep for days. I remember at the time thinking it was strange, and I even talked to my roommates about how my symptoms were so much more intense than I had ever experienced, that something was different, off. Of course, I never did anything about it. But it was my body telling me that there was something wrong. I think I knew inside that there was something off. When I was diagnosed, the doctor told me it was likely that I had had leukemia for a year already. I don't think it would have changed the outcome had it been discovered earlier: because of the type of leukemia, I would have needed a stem cell transplant anyway--but still I wonder. So I encourage all of you to take notice of yourself, and listen to your body. I'm not encouraging hypochondria, just rational and important caring of ones' self. If something seems not quite right: a lump here, persistent rash there, you're getting sick more often or noticeably more severely, night sweats (especially night sweats! That is, waking up so drenched in sweat that you have to change your clothes and/or sheets. It can be a sign of a serious underlying disease)… get it checked out. Get a blood test. A chance blood test is what saved me.
Well, back to the Chopped! marathon for me...
Here's a picture of Marie crying at a commercial. She's emotional.
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