I have debated in my mind if I would do any more “updates.” Part of me wanted to wait until I had nothing but good news to share. None of us like to hear about bad news and those who “over-share” their struggles are quickly marginalized within our optimism-longing brains. I’m not a whinner. I never have been and that is not my intentions now. But I also never knew the depths of suffering that some cancer patients must go through. I am also amazed at the resilience of the human psyche, that it can endure so much suffering for so long without a total mental “crack-up.”
So, if I say nothing, well-meaning people (and I would do exactly the same) make the assumption that things are going well. I hear often, “Mike, you look good. I heard that you are doing really well.” I don’t know who is spreading those rumors, but they seem to grow within the darkness of my silence, like mushrooms in a hollowed place.
On the other hand, if I inventoried all the problems I’m having, all the set-backs and disappointments, then I will appear as the proverbial “Debbie Downer” and it assumed that I just have a bad attitude about the whole thing, or, as a (very few) have suggested, I don’t have the right faith or pray right.
To share or not to share is the real dilemma.
Before I started typing this morning, in my mind I had a long version to “update” all the problems that I’m dealing with right now. But I’ve decided to summarize with the two most important. I will also add, to help shed the “Debbie Downer” image, that, within the sea of bad news over the past 8 months, there have been a few pockets of good news, for which I am deeply grateful. Yes, I am still alive. Yes, I’m still off dialysis for now. Yes, I’m still home.
In a nutshell, without the nasty details, I (which only happens to 10-20% of people who used their own stem cells) developed a graft vs host syndrome, which required me to go on five new daily medications, the main one was high doses of steroids. Of the five, four of them had a potential of re-injuring my kidneys. I will be off all five by Sunday (which is very good news). While my kidneys had returned almost to normal in late June (creatinine of 2.2 and BUN of 23), after six weeks of these drugs, they are doing worse again. If I had to go back on dialysis, to me, it would be worse than death.
The biggest danger for a stem cell transplant patient is an “opportunistic infection.” Being on steroids increases the risk of such. So, a common cold is nothing to most people, but could be fatal to me. Unfortunately, I do have such an infection (CMV), which was discovered this week. If the infection had “matured” it has a mortality (death) rate of 21% in patients like me, and if it turned into pneumonia, it as a mortality rate of 100%. The nugget of good news in this sea of bad news, is that we caught it early and I’m on treatment. Hopefully it will not get worse. However, the new anti-viral medication is also hard on the kidneys.
So, that’s where things are at. Yeah, I feel discouraged at times. Sometimes it is more like one step forward and then two steps backwards when I want progress so badly. Mike