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 
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