UPDATE 8/15/19 and some Self-Pity Ramblings

UPDATE: Always Something

I had my stem-cell transplant in mid-June. Around July 4th (I know I’ve said this part before) I came down with graft Vs host syndrome with serious abdominal pain, head to toe rash, and profuse diarrhea. Was started on five new daily medications, the cornerstone being a high dose of steroids (after six weeks of therapy, I’m off those medications now and my graft Vs host has not come back, a good thing). However, being on the steroids caused a dormant virus (CMV) start to propagate. A full-blown CMV infection, in someone like me, has a very high mortality rate. I was then started on a new anti-viral medication to treat the CMV. Virtually all the medications that can treat CMV, can harm the kidneys. I was started on the one medication that harms kidneys the least. However, it has one rare side effect of hemolytic anemia. Unfortunately, it has caused this side effect with me. My hemoglobin started to plummet as soon as I started it (dropping by one full point per week). Now I am very anemic and extremely weak. When I first came home from the hospital, I was walking 5 miles a day. Now, I can’t walk from my bedroom to the kitchen without being very short of breath and a heart rate of  120-140. I did walk two miles yesterday with Jerry, but it was like climbing Mount Everest. Tuesday morning, I could not stand without almost passing out. This is very discouraging, and I feel I’m losing ground daily.

The other bad thing, and we think it is related to the anemia, is that I woke up with a severe headache 12 days ago, and it has never gone away. It keeps me awake every night and there is nothing I can take for it. I’m not supposed to take Tylenol, because it could mask a fever and infection. I can’t take anti-inflammatory drugs, because of my kidneys. So, I pack my head in ice packs, hoping I can get an hour or two of sleep when my head becomes a little numb. At least I don’t have the associated symptoms (except of light sensitivity) that my migraine patients have.

I must remain on this antiviral medication for two more weeks, if I can make it. The CMV viral load has come down. We are trying to avoid more transfusions (I had five in Seattle this summer) because with each one, someone with such a compromised immune system as me, is put in danger of an occult infection. This is where I’m at.

Denise is back at work with mixed feelings. She wants to be home with me.  I think it is good for Denise’s sanity to get away from me, from not hearing about my constant symptoms and watching me struggle every day. Greta, the Saint Bernard is watching over me.

Ramblings: More Self-Pity

I am certainly not a superstitious person, but if I were, I would believe that some great curse has descended upon my life in the past two years and—while there are good spots now and then—the trend does not seem to be changing. I think it seems so severe to me because, for the previous 62 years, I felt really blessed. I have five healthy children, who have turned out to be fantastic human beings. I have been in very good health without much of a taste of suffering… until now. I remember thinking, before all of this started, that life could not be any better. This previous life juxtaposed against my present life, I’m sure, intensifies the distress.

I do know several facts, for one, the line between venting (what I think I’m doing here) and self-pity is a fine line, easily crossed. I also know that others have suffered far more than me, many in complete silence. I also know that there are limits to human empathy.

My professional calling was to listen to other people’s complaints. I thought I was very empathetic. But now I know that I could never live in some else’s skin, feeling what they feel, nor can I ever hope to communicate what I now feel to others. Suffering isolates you from people, because you start to live in a private world that, unless you are a gifted poet, can never express appropriately. I regret those times that I didn’t listen to the suffering of others more carefully.

My curse seemed to have started with two, unrelated, back to back freak accidents in 2017. One cause a complete tear of my left rotator cuff and the other a partial of my right. The pain was constant and pretty severe from that point forward (I am happy to report that pain has been gone for 3-4 months). In June of 2018 I was at Swedish Hospital, having a shoulder surgical evaluation (both shoulders were deemed “unrepairable”). While I was walking to the surgeon’s office that morning, I had a call from my sisters that my mother had passed away. I had to stuff the grief as deeply as I could for on that day, I was also starting to host a week-long wedding party for my daughter. My next call from my siblings, a few of days later, was to inform me that they were having my mother’s funeral without me. This created tension within my family that I had never experienced before.

The next event was when I flew to Tennessee in October to say goodbye to my mother at her grave on my own terms. It was during that trip I first started to notice some vague symptoms (I would call it malaise), which, in retrospect, I think was the beginning of my cancer.

In December, my vague, mostly neurologic, symptoms intensified. I suspected I had ALS, which I knew was a death sentence. It was about this time I had a call from my brother who reported to me that he was very sick, with his own bone marrow cancer (different than mine, and mine was still undiagnosed) and he was asking me to be a donor of stem cells to him. I said yes; however, I had the intuition that something was very wrong with me. I was on a long wait during the Christmas holidays to get in to see my doctor.

It was January 11th that my doctor ordered some labs, which showed I was in complete renal failure and I ended up at Peace Health by that night, fighting for my life.

Since then, there hasn’t been one hour of one day without some significant symptom plaguing me. It was either pain, diarrhea, nausea, vomiting, weakness, neurological symptoms, or many others, often all at once.

My bother has been in worse shape than me at times and still has not had his stem cell transplant due to very serious complications leading up to it. I’m not sure he can survive what I just went through in his weakened state.

My nephew, David, during this time has also become very seriously ill and his future looks grave. My sister has fought hard to keep her son alive, but she feels like she is losing him now. What makes that situation most frustrating for all of us, is that was preventable or at least treatable at one point.

I am so weary of bad news and suffering that I call it suffering-exhaustion. There comes a time when you start to give up any hope that you will ever feel well again, even for a flighting moment, or that things will go well again. I have begged God for mercy for months to help me turn the corner, to give me a single day of respite and I’m still waiting. I pray too for my brother, my sister and my nephew daily.  Mike

9 thoughts on “UPDATE 8/15/19 and some Self-Pity Ramblings

  1. I’m so sorry for the weight of all this. It just sounds awful. I know there have been and will be moments of hope and encouragement, but quite honestly it all sounds like too much to bear. May God give you grace in the midst of it all… whatever that means and however it comes, I don’t know, but that’s my prayer today. You are walking a hard, hard path. I’ve got nothing except to say I am praying for you… hopefully not empty “thoughts and prayers” but gut-felt “God help my friend” prayers.

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  2. Well damn, Mike. I didn’t know about the virus. Fighting to put one foot in front of the other after five miles a day must be so discouraging. I have not words of wisdom…. just hang in there.

    Any ideas what I can do to support Denise right now?

    Blessings and good thoughts sent your way (for whatever they are worth.)

    Ann Ann Hutchinson Meyers, Ph.D. Annmeyers@gmail.com 210-213-0320

    “The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.”

    Ralph Waldo Emerson

    >

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  3. Mike, I want you to know I am very interested in this level of detail of your experience, and thankful to see another update (you’re still with us!), but sad about your relentless suffering. I doubt I could hold up like you have. When I was 18, I had a super bad flu for a week, and earnestly asked God to take my life several times…haven’t had such severe symptoms since, (though I am actually much sicker now). I fear what you are going through just might be a window into what I can expect for myself, if my case follows the statistics (so far, I’ve beaten them in several aspects). But that just gives me an added perspective…It’s NOT why I’m checking this blog several times a day…I really do care about you, and think of you often over the years, even though we haven’t communicated in a long while. Not a prodigious intercessor these days, but I am adding a few feeble requests on your behalf to the many others that have been going up.

    —S.

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  4. Again, I’m sorry to hear it is not going better but do appreciate you sharing. Please don’t ever feel like you are complaining or “self pity” I for one am thankful to know how it is really going

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  5. Thanks for sharing Mike. I can say (with my logical brain) that life is all about ebbs and flows and that you will likely get the respite you so desire eventually. My therapist brain (hopefully full of empathy) and personal/current struggle with cancer and it’s treatment can say I know that doesn’t mean much right now when words can do so little. But I’m going to say it anyway as I hope it can provide some help or just plain distraction. I think of you often and thank you for the updates. May the CMV move along….damn it!
    Kristi Dahlman

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  6. Mike, so very sad news and what can words say. Know that you are loved and respected by so many who are praying for you and Denise. I will add your family members into my prayers as you are constantly in my thoughts of wondering daily how you are. I have never known any body putting words to their sufferings like you have. Makes me stop and think of the people in my life that I just went my way instead of really knowing and caring about other people’s sicknesses. I will continue to pray for you Mike to get stronger each day and combat this horrible disease🙏🙏🙏

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  7. Mike, I am a patient of yours….I decided to do a little research as to why you were still on medical leave and I was shocked to find your blog. I can’t tell you how much it saddens me to read all you have been through, and continue to go through! I am so sorry! I want you to know, you are the MOST compassionate, professional and fantastic medical professional I’ve ever been to in my 52 years. I came to you after being told by neurologists that there were no more options for my pain. You gave me hope and you never gave up. Your compassion and care for me as a whole person was refreshing and wonderful. I can never thank you enough for literally changing my life! You made me feel hopeful after years of chronic migraines and then you didn’t give up until you found something that helped me so much! I hope and PRAY that you get better and have more good days than bad to come. You are a kind and compassionate soul and I hope you know that you’ve changed lives. My prayers are with you every single day!

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  8. Just to let you know I’m still praying you will come through this and be pain free again. I, still amazed by your blogs and your daily walks no matter how sick you are. I have faith you will pull through. I love you PA Jones. En shah Allah. You’re amazing.

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  9. Mike…. I’m so sorry that you have to go through all this and that your family is struggling too. Please continue to share your journey and I will continue to pray for you and your family. I wish I could do more.

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