Good News
I will start with the preverbal good news first and see if I can get some lipstick on this pig.
My white count has suddenly jumped back up to the normal range after being severely low and was putting me at risk for a serious infection. For that I’m grateful.
My red blood cells are slightly higher (less anemic) with a hemoglobin of now 10. I can tell the difference where I’m not short of breath as I’m sitting or tachycardic, but with exercise I am.
I had a full body MRI which showed no boney cancer lesions. I had one lesion on an MRI prior to my stem cell transplant so either that is better or the first one was an artifact (not real).
Bad News
Have you ever had one of those experiences where you get some really bad information and then the next day you don’t believe it is real? Well, a week or so ago, when I got a glimpse of my bad protein and saw that it was unchanged (actually a little worse) than before the stem cell transplant, I had a horrible feeling as I expressed here so clearly. But I wanted to hear it from the “horse’s mouth,” meaning in this case, my oncologist. Well today, the horse spoke. I was not delusional. It may very well be that the stem cell transplant, with which I had hoped of reaching almost a cure, did nothing for me, except to make me suffer horribly (including all the complications I had afterward), costing ½ million dollars, and now putting me at quadruple risk for getting other cancers (a standard risk of stem cell transplant). I am also not a candidate for another stem cell transplant because the first one failed.
I can’t say this is my worst nightmare, because a total lack of response wasn’t even on my radar. About 20% of stem cell transplant patients reach the near cure. In one study, 92% had some remission. There is no evidence at this point that I’ve had any benefit, so I would fall into the miserable 8%. I had at least that much hope and so many were praying for a good outcome.
At this juncture, there is a slippery slope toward a rabbit hole of despondency or bitterness. The thought of all I’ve gone through for almost six months and to have nothing to show for it is almost beyond comprehension. Self-pity is also a drawing force. Therefore, I will choose, as best as I can, not to let those thoughts enter or take over my head or they would consume me. I just will not go there.
So, what does this mean? On Tuesday of next week, I go back to traditional chemotherapy. If I am really lucky, and so far, I haven’t been, the cancer will have weakened a bit and it will respond even better this time. After a few weeks, if the cancer isn’t going down, we will start to add more drugs to the treatment. We have several others to try, then there are experimental studies after that. There are good things coming, but most are a few years away. Some people do well for many years on chemotherapy alone and that is our hope and prayer now.
Mike
J. Michael Jones 
7 responses to “UPDATE: 9/24/19”
That’s my hope and prayer too. I so wish the results were different, but will pray with you for remission, for mental rest and for the days that lie ahead. You’ve certainly given this process your all. Damn the percentages… here’s to days that allow for hope and laughter in the midst of what would likely break most of us. It is a gift to hear from you as you wrestle with mortality and to join with the many in praying for you along the way. Peace to you and to those beside you, friend.
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I don’t know if you like the word courage or not Mike, but you have it in spades in my opinion.
You continue in our prayers.
Keith
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Mike,
I am at a loss for words. What can one say? I cannot imagine what it is like to walk your shoes.
Please know my thoughts and prayers are with you, Denise and your family.
Embrace all the love and support of family and friends.
Believe❤️
Ann
Sent from my iPhone
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I am sorry, why do we say that? For me is heartfelt, is what I feel, is real, is painful, is a reality. I have never met you, never cross paths, but I feel so much for you is not even comprehensible.
Perhaps, because both of us are PAs? Because my life has been marked by loss due to cancer? Or because you have in some ways have shown me strength, dignity, courage, a fighter, a pragmatic individual, a wishful person, a dreamer, not sure. Just know that I pray for you for your family for your wife and for a miracle. Yes, a miracle that you will fulfill your dreams in this life and that you will live to be a hundred and more.
Also know that this life is momentary and if you as the rest of us shall fall sleep we have a promise, a wonderful promise of resurrection to live forever and ever. May your dreams be sweet, calm and do please breath and continue taking in God’s wonders of waking up daily.
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I’m sorry Mike , not what anyone wanted to hear
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Hmmm…you had to try for the hope the stem cells would “take”. I think I would have gone for that hope, too. So sorry for all suffering. Sounds like you are aware of possible advances coming on line. Meanwhile I will be praying the chemo works and gives you the gift of enjoying this life, my friend.
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I’m very sorry to hear Mike, you were very brave to give the stem cell transplant a shot!! I’m glad you are on the path of not going down the dark tunnel and will focus on the good so far. My prayers for successful years from chemo treatments are with you and your family. There really are more great things on the horizon and even some things to try now if you choose.
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