Welcome to February! A year ago I was doubtful I would ever seen February 2020 and I’m glad I am here.
Summary:
- Monday 2/3/20 I will have labs to look at my kidneys and I will get my, every 90 day, direct look at my cancer (via serum protein immunofixation).
- My neurological symptoms are still present, but for the first time I can say with confidence that they are naturally improving, although very, very slowly. I did see two neurologists. One was expecting that I had ALS (that would make my luck pretty damn bad) but after electrical testing of the nerves, we can say it is not (although ALS was my original self-diagnosis I was confident that I didn’t have it now). So my diagnosis is most likely, uremic polymyoclonus.
- Mental health. I’m sharing this not to add more melodrama, but I saw a psychiatrist for the first time this week for mental health support. I’ve watched two relatives die this year that can be traced to unspoken mental health issues. So, I share that there is a need for mental health support in normal life at times, but especially when you are under a personal crisis. Denise has also paid a big price this year in her emotional health.
- It appears, baring a miracle, that my 38-year career in headache medicine has come to an end. I was feeling strong enough to try and return to work and my post-transplant quarantine was lifted, however, due to business concerns (and I don’t protest those, as my clinic has lost money in my absence) my clinic is closing and I’m being laid off. This was a big blow.
Details:
To add some details to the above comments.
Regarding my upcoming labs; My highest level of cancer (aka M Spike) was 2 grams/liter. After my bone marrow transplant, the reading in October was only been a “faint trace.” You would think that the cancer is remission, but we know its not because it is still making the evil proteins. Two weeks ago, the proteins had risen after falling for months due to chemo. Our prayer is that this new lab will show the M Spike remaining almost undetectable because it if is rising like the bad proteins did, it could mean trouble.
I did see my nephrologist at the University of Washington last week. The first time I saw him, in October, it was dismal. He wanted to make sure I knew that my kidneys are total crap and won’t get better. This time, it went smoother. He reviewed my labs and came to the conclusion that while my kidneys are indeed crap, they are stable and holding their own. He works a lot with MM patients (20% of MM cancer has kidney failure as part of the syndrome) and he said, from his perspective, my cancer is not very bad and should be easy to suppress, however, the damage to my kidneys has been terrible and irreversible.
This past two weeks have been especially difficult from an emotional standpoint. As I mentioned above, I did see a psychiatrist. I had asked for this appointment in October, after being told by my oncologist that my bone marrow transplant did nothing for me. I was suicidal once again and, with Denise’s urging, I ask for an psychiatric evaluation. We don’t know why it took so long to actually see one.
I am certainly not suicidal at this juncture as I’m feeling so much better than I was in October, but I want to continuing seeing the psychiatrist for mental health support. But we did have three big emotional blows in the last two week. The first one was when I was expecting to be declared “in remission” and then my light chain proteins came back elevated. This was an huge blow.
Then the next blow came as I was preparing to go back to work. I had met with the hospital several weeks ago and everything was green lights. But then I met with them this week and suddenly I had been canned, along with the entire clinic. I don’t dispute their reasons from a business standpoint as my illness took a toil on the bottom line. It is a huge blow to spend your life and career in helping headache patients and then it suddenly it ends and without fanfare. I am talking with another hospital about creating a new headache clinic, but my optimism is guarded.
The third big blow came when I had lunch with someone from my church. Things were going well in the conversation, but then he said a simple troubling statement. He described how wonderful his relationship was with God but observed, I think based on my writings here, that I did not have a relationship with God, or at least not like his.
Now, don’t get me wrong. I am used to criticism. I’m used to being told I’m not a Christian, that I’m going to straight to hell, and that I have all kinds of theological errors. I get this because I write things that are candid, I show personal weakness in my writings, I write controversial things, and often I am critical of American evangelicalism. But his remarks hit me very hard, I think because I did not see it coming and in light of the deep, in-the-trenches relationship I have had with God during this personal ordeal, to be told my relationship with God is inferior was painful. This person has apologized, especially once he saw how difficult his words were to me, and I accept his apology. However, the emotional blow has been tremendous with little sleep and prolonged agony.
While these things mentioned above happened to me, Denise has also felt the brunt of this. I’ve never seen her so low as I do right now. It think for her it is the accumulation of stress over one year. Besides dealing with a husband who has been near death for much of the year and who’s future is unclear, she has a very stressful management job. She feels obligated to keep the job because I’m not working. She is exhausted.
Our marriage has been under stress as well. Besides the obvious reasons, a recurring theme now is that Denise works such long hours, leaving often at 6 or 6:30 in the morning and not getting home often until 6 or even 7 in the evening. Like I said, she does this because she feels she has to. But for me, I am home alone for all day with no one but my dog, Greta to talk to. I am deeply grateful for Jerry walking with me every day at 3 p.m., otherwise I think I would have gone mad. But I am so profoundly lonely, then Denise comes home burnt out and exhausted after 12 hours of being gone, and she does not want to talk to me. This is the stress that we are working through.
To avoid sounding like “Debby Downer” again, I will say that I do feel so much better than in previous months. Certainly not normal, but more than half normal.
Thanks for your prayers and support. I will update the lab report when it comes in around Wednesday or Thursday.
Mike
J. Michael Jones 
12 responses to “Update: 2/01/20”
Thank you Mike for sharing these tremendous challenges you’re dealing with. I so wish I had words that could bring true comfort. My heart goes out to you and Denise with prayers for peace, rest, comfort, connection, and love 💜💜
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Today’s writing is of where the rubber meets the road. Spouse’s partnership in suffering, friend’s misplaced words, job loss, and the ever-present numbers of cancer. You convey it all with clarity and hope. For this I thank you for contributing to my thinking.
Unfortunately, words once spoken cannot be retrieved. We have been at both ends of this oft-hurtful truism. It’s human. Faith is an invisible strength. Some may need to hear your convincing words, but to me the obvious source of your courage and strength has been the underlying attraction in this blog. Thanks, too, for including Denise’s plight in today’s message. The love between you is also an invisible strength. Continuing my prayers for both of you.
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I have been praying all along for you and Denise. My mother told me long ago, God knows what is in your heart.
Only God knows all the corners and shadows. People including me say all sorts hurtful thoughtless things When I got the diagnosis of MM the disease that killed my mother. It was” Oh God here we go again. Just you and me”. During our long alone times it’s like that for me. You have so many gifts Mike. I appreciate your sharing. It takes courage. And as I’ve said before you help me in ways you don’t know.
❤️EffieJo
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I’ve been thinking of you, knowing that you, like me, needs to find a new doctor. Have you had any luck?
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Thanks for the update Mike and I am so appreciative of your honesty and wish more people were like you. I hate that your clinic is closing with no one like you to take care of patients the way you and Dr. Moren have, it is a great loss. You have done so much for so many people and hope there is a way for you to continue even if it is in teaching someone else to do what you have done.
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Sounds like you encountered one of God’s Special Pets(TM).
You know the type — always serene and unshakable in their Great FAITH FAITH FAITH, without an instant of doubt or hardship since they Said the Words at that long-ago Altar Call, where everything breaks their way like a Mary Sue Author Self-Insert in bad fanfic (or Left Behind) — why, God sends His Angels to carry them everywhere so they never ever dash their foot against a stone!
So Christian(TM) they have ceased to be human in any way.
Characteristic cry: “O Ye of Little FAITH. Tsk. Tsk.”
My writing partner (the burned-out country preacher) has a name for them:
LIARS.
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P.S. Or psychotically delusional.
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So dang many challenges. We continue to pray for you and ask for God’s presence and kindness in the face of so many firing squads. I’ve said it before, but I so appreciate your candor and honesty as you walk this hard, hard path. I’m surprised (and not surprised) that you encounter so many friends that aren’t comfortable with your struggle. Surely life teaches us that we each have our own path to walk and that no one else’s experience of faith and longing or hope and despair is going to be the same. It only take a cursory glance at the Psalms to know that honest struggle is to be valued and honored. God invites our questions. None of us are here to “fix” our friends. We’re here to walk alongside them in the hope that we might be mutually changed for the better.
Therapy can be a great gift. I’m praying for you in the losses and loneliness. You’re a good man and I for one am grateful for your ramblings…
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Thank you for your honesty and I’m glad you are seeking temporary help from a psychiatrist as this has been a heavy year. So sorry that it took so long to be seen but we just don’t have enough psychiatrists out there. I hope you have had luck finding a new oncologist as well. All my best wishes. Wish that I was nearer so I could stop over and walk/talk with you as well.
Kristi
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Mike, I’m so sorry to hear about the clinic closing just when you had hopes of returning to work. Specialized care is already lacking, it will be a great loss to many. I do want to thank you for thinking about me and my care while you are walking this very difficult journey. You aren’t replaceable in your knowledge and determination in the field. But I am getting care through my primary at this point. I will always be grateful for the years of great care and I remain hopeful.
I’ll be keeping you close in thought. I do hope you’ll be able to find ways to connect with people to not only share all of your gifts but also for human connection.
Prayers and hope for good lab results and keep reaching out for all your care needs..mentally and physically. You’ve truly had a horrendous past year and it’s so important your needs get met. I also hope you find a new doc that can help you. Please don’t lose hope on the home front. I will pray for things to change and pray you will both come out stronger for it. Meanwhile..enjoy Greta..I’m sure she is a great friend and not the least judgmental. 😉
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I hope you find good care, if you still need it. I started moving out of my office today. I ran into one of my patients who didn’t know it was closing and I was having to leave. She felt devastated.
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Dear Mike,
I have been holding you in my heart since I learned of this terrible set of challenges before you. You have been a source of compassionate listening ( in my mind’s ear) and hope -for a patient centered approach to coping with life’s circumstances. Although it has been a long time since I met you -first in Bellingham and then in Anacortes- I was trying to find you because I wanted my records from the time you cared for me. I have not seen a specialist since leaving for San MIguel de Allende, high in the Mountains of Mexico.
I still remember your respectful but questioning tone about the wisdom of this decision. Your ability to see me, hear me without judgment and to educate me about possible options has continued to support my journey with brainstem with aura migraine. I so wish I had your point of view about things migraine.
I so wish we could talk.
My heart goes out to you and to your wife at this time of deep healing and transformation.
I am sorry the clinic has to close. Dr. Moren must be tired too. You worked so hard for so many of us! Helped me to skip through the not so light burden of medicine’s dark ages. You are too precious to all who have known you as a healer. There will be another way, another place, when the time is right.
As a retired psychiatrist, I hope you have found a “good fit” to listen deeply to you and to affirm the generous person that is the core of your being.
I have the greatest respect for you.
Want to be pen pals?
Visit us at The Daily Migraine Online Support Group on FB where I am a moderator.
Come and visit and stay in a different climate. We have a casita to offer. Bring your wife. Bring the dog.
You are always welcome.
Most sincerely,
avk,md
b. mcdowell,md
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