My poor tablet sits, alone on the window sill. Each day it seems to be saying, “remember me?” I honestly can’t remember ignoring my tablet and it’s portal to the online world the way I have in the past two weeks. It has literally collected dust.
I picked it up today with the sole intent of coming to this blog and shutting it down for good. I simply feel too crummy to type or to surf the web. I didn’t realize, before now, that when your stomach is nauseous that it is hard to follow the cursor on a screen.
I do remember a day, about four weeks ago, when I was meeting with a social worker as part of the prep for a stem cell transplant. I told her how good I was feeling on that day. I had not had dialysis for four weeks at that point, and dialysis always made me feel bad. I had also not had chemo for eight weeks, which made me feel at least as bad as dialysis. I told her that I was feeling 80% normal. She gave me a smile and said something strange, at least I thought it was strange at the time.
“Michael, remember how you are feeling today and know that someday, hopefully, you will feel this well again.”
This was just days before the stem cell transplant. This social worker is part of the stem cell transplant team and knew where I was heading.
Medical care has two main purposes. One is to ease suffering. The other is to save lives. It is hard to imagine that we just went through a very complex process that will end up costing hundreds of thousands of dollars and that process has taken me from feeling 80% normal, to feeling horrible. But the purpose of this process is to save my life, not to reduce my suffering . . . at least not yet.
I do have hope that there will be comfort coming. That hope is seen only as mirage at this point, but has factual basis. For one, there is a very good chance that I may never need dialysis again and that alone may usher in a much better feeling, in a few months.
The Seattle Cancer Care Alliance has the most experience with stem cell transplantation in the country. They have well-written road maps as to what to expect at each juncture. For now, and for the next few weeks, diarrhea, cramping, nausea, vomiting, altered sense of taste, and several other symptoms dominate. These should slowly subside.
I am now entering a new phase where things like “cognitive changes” start to appear. I don’t what will mean for me or even why it has to happen. I don’t know how much of the old Mike is still left. I look at myself in the mirror and I don’t recognize myself. The bald head is just the most obvious. But the muscle wasting, purplish hew to my skin, dark eyes, all seem to tell me that it isn’t me in the mirror. If I start to loose my cognitive abilities (and hopefully it will only be temporary), what’s left of me? Will I be able to rub two words together to create a sentence? Will my brain get to frolic in the fields of “high thoughts and pondering” ever again?
So, I came here to shut down this blog before I start to really ramble or where my cognitive lapses allow more room for typos to grow. But instead, I find myself sharing more thoughts. It appears that for now, I will leave this place intact, in case there is enough of the old Mike left in the end to make sense about something.
J. Michael Jones 
14 responses to “RAMBLINGS: 7/2/19”
So glad you’re willing to continue on, love Mike !!
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Mike,
Thanks for sharing and for your brutal honesty. I hope that you won’t make any final decisions about anything today….that you just live day by day and do what you need in the moment. But recognize that might change as time goes on. You might be ready to shut down the blog but my experience would say, “leave it open” because you never know when you might be drawn to it and that will be easier if it is still intact. On the other hand, its ok if it gathers dust in the meantime. Thinking of you…..
Kristi
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Thanks for sharing
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Please keep on rambling if you are able. I enjoy hearing from you and how the journey is going…warts and all. Thanks for sharing your life with us. At the the risk of being misunderstood in saying this: You do have much to be grateful for in the pain and suffering. You are not alone. And you are still writing. Glad you can report progress though I am sure the uncertainty is quite unnerving. These words are written with love and concern for you, friend, not with unrealistic happy talk or false hope. Still praying….
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Being real is important and I appreciate your ramblings. I don’t enjoy hearing about what you are going through but the wisdom and brutal honesty of it all. Your experience may enlighten others but you only owe what feels right for you. I hope your writings have therapeutic value for you and that you will continue as long as you are able or are driven to do so. I read your first book on Headaches..I know I am late to the game. I also finished Waters of Bimini..Mike is was fantastic!! Our prayers here will continue for strength and for healing. I pray you come out from the other side healthy and a version of yourself you are happy with. I pray for you and your family! Thank you for the update!
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Very glad you decided to continue today. Your ponderings and reports of suffering and successes are very interesting to read and gives me specific things to think about when you are on my mind. SO glad you are off dialysis . Thinking of you. -Silja
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Mike, We want you to keep writing because we want to keep reading.
Nick and Genie Parrott
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Thank you for the updates- I hope that as you write you can experience a sense of “normal” through your love for writing.
Im praying for you and Denise daily. I know you probably hear those words a lot but please know that I mean them. You’re not alone, we are here fighting with you, and asking for complete healing and restoration for you.
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I along with so many people wish and pray and ache for you and all you’re going through. I’m so thankful that you choose to do this blog as it feels like a connection with you and gives some sense of being there with you and Denise ❤️ Sending love and thoughts/prayers for relief of your suffering along with healing 💜
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Mike, still no words of wisdom come to me to take your pain away. I’ll continue to pray for you and Denise. I will miss your writings, but you need to do what is best for you. If you chance your mind, your wisdom is always welcomed on my screen even if it is just a few words.
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Please keep writing if you can. Even though it breaks my heart, I love hearing about your progress and it always prompts a prayer. I can’t imagine the constant nausea and hope that ends soon. Know how much you are loved.
Love, Sandy
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Again, thanks for your personal sharing, Mike! It helps us feel connected even with so many miles away in MN. You are loved by us through all the stages you go through!
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I really appreciate your writing. Please continue! Hoping for a strong rebound for you from Austin.
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Keep writing Mike, even if nonsense comes out at some point. It is a positive outlet to” get it out with” each letter you type. We want to share with you whatever you experience. It helps guide my thoughts and prayers anyway…
I wish that we could do more to assist you during this suffering. I for one like to hear what is happening because the voicing it lets it out of you to some degree and let’s us and the universe know that you are a fighter. All of your efforts have brought you this far! Don’t unplug yourself from the world of folks quietly supporting you. No negative cause making. Hopefully less negative thoughts, though I know how difficult that is because it is all so difficult, beyond measure.
Good job! Keep up the good fight…
Blessed be, peace
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