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
J. Michael Jones 
9 responses to “UPDATE: The Infirmed’ s Dilemma”
Mike,
I have good kidneys per my doc and my recent kidney scan. I will happily give you one of mine! I love you, your Sis Susan
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That is very sweet of you. However, I’m not allowed to have a donor kidney unless I remain completely cancer free for at least three years, and still some places will not allow it, ever.
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Please keep sharing both good and bad news. If you share your pain, perhaps it will lessen it when you don’t keep it all to yourself.
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And so we stay on the battlefield with you and continue to pray!!! Please Lord, we need better, healing days ahead!!!🙏🙏
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As always Mike, thank you for your honesty. Yes it’s difficult to hear of your great struggles and suffering, and for some they may choose to stay in a place of comfortable denial rather than have an awareness of another being’s pain. I would rather have a person be real and authentic, and if that makes me uncomfortable then that tells me I need to pause and look inward. Having an awareness and intention to live from the four principles from the book The Four-Fold Way, has been very helpful for me for quite a few years now. I can see some of these qualities/principles in you and how you choose to live your life.
Here they are:
1. Show up and choose to be present
2. Pay attention to what has heart and meaning.
3. Tell the truth without judgment and blame (this is especially about being true and honest with yourself, vulnerable and authentic)
4. Be open and not attached to outcome
You and Denise continue to be in my thoughts and prayers
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I’ve never felt your updates sounded like you were a ‘debbie downer’ or that you were pushing a poor me attitude. I think many of us knew you were still struggling with issues and that you were still in a fragile state even though you seem to me to be stronger than most. Many admire your desire to not let ‘good’ days be wasted by doing nothing. You try and take advantage of our beautiful nature by getting out in it while keeping your distance from harmful situations. Your mind most certainly is not going to waste. I’m impressed with your knowledgable and deep insightful thoughts that you share with us. I believe most people would be just too plain exhausted to think. So..please continue to share all that you are comfortable sharing without feeling like you need to guard those thoughts or feelings. I hope the anti virals do their job in short order, therefore not causing too much harm for your kidneys. My family will continue to pray and hope that you and your family get your miracle recovery. Take care Mike!
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Those were nice words. I did have to stop thinking for a couple of weeks back in July (still in Seattle) and watched mindless TV from the couch.
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Mike, I appreciate the update. I will continue to pray for you and your kidneys.
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Ditto B Hammond above!
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