Well, here I am, in the wee small hours of the morning, about 4:15 AM, in the middle of my current bout with what I call dexsomnia, a steroid induced insomnia that I deal with weekly for about 36 hours, as a part of my current cancer treatment regimen three and a half months after my diagnosis. And I’m wondering, again, where do I go from here? I can’t get it out of my head until I deal with that question every single morning, and most of the nights like these, when I can’t sleep. I have to face the fact that I have incurable cancer, I accept that I have to live one day at a time, in the present, and I choose what I will do on this day, to the extent that my body permits.
The best thing I can do is start by counting my blessings: that last night’s wish came true, for one more day with the love of my life; that my cancer may not curable but it is manageable and with proper and aggressive treatment it can be dealt with as a chronic condition like diabetes that I can live with for years; that the treatment will be hard on my body and possibly aggravate my other chronic conditions but I can learn how to live with each twist and turn; that I have family and friends that care about and pray for and encourage me, and with whom I can spend every day no matter where I am; that I still have goals, a great hobby, and even an abbreviated bucket list that give me purpose; and that I have neighbors in my new HOA back home that depend on me.
When I look back on my post in August last year about committing to a new path (20220826), little did I know that new path would take me in an entirely different direction than I ever anticipated. That old adage, life happens when you’re making other plans, turned out to be exactly right.
Just one month later, in September, my semiannual blood test which was part of my regular diabetes checkup with my PCP, came up with some very disturbing results. Fortunately, my PCP is one who likes to get to the bottom of things quickly and immediately started testing for various possible causes of what he determined to be Pancytopenia. He found a number of chronic conditions had appeared, but none explained the blood issues. By November he had done what he could but determined I needed to see a hematologist, and in Grand Rapids that wasn’t going to happen until late winter or spring.
We decided to head for Texas as usual and he suggested we see if we could find one there we could work with. We arrived on December 6th and on the 9th I was in my new oncologist/hematologist’s office who had the same philosophy as my PCP, let’s get to the bottom of this as quickly as possible. After six weeks of tests and a bone marrow biopsy, we waited in his office on January 27th for the diagnosis. Here is how that day and weekend went. (20230129)
And now I know more specifically what I have, exactly what treatment plan I’m on, how my body is responding to that treatment plan, and what the possibilities are of living with this disease.
I have Indolent (Smoldering) Multiple Myeloma (MM) (early and often undetected at this point), a cancer of the plasma cells in my bone marrow that causes them to produce immature and insufficient numbers of blood cells, and damaging proteins that attack my kidneys and bones. It is not curable, but it is manageable with the right treatment plan that can get me to a non-progressive state for an indefinite amount of time ranging from several years to possibly decades. We caught it very early, I was and continue to be asymptomatic except for my blood tests, and there is no bone or kidney involvement, two very critical points. I’m on a highly targeted immunotherapy program that tags cancerous plasma cells and helps my immune system accurately identify and kill them. Most of my blood, enzyme, and protein counts are normalizing with the most important white cell, red cell, platelet, and hemoglobin results normal or nearly normal again. I am currently autologous (self) stem-cell transplant eligible but may not remain so due to my other chronic conditions. However, I may not need the transplant after I complete this eight month treatment regimen I’m following. Another bone marrow biopsy at that point will determine the degree of response I got, and what my maintenance program will be.
My choir director lost her mother to MM not long after her diagnosis. A close friend was diagnosed in November but has bone and kidney involvement, is not transplant eligible, and is trying different treatment regimens, which haven’t worked so far. Another friend lost his wife to complications from MM after fifteen years, and a neighbor is in good health and has been living with MM for more than ten years. I’m on one of the newer and more effective treatment plans developed in recent years, so my outlook is promising.
Sorry for all of the detail, but that’s the type of person I am, very detail oriented and analytical. My oncologist loves that I’m this way, thinks I’m one of his best patients! Good, I’m not too much of a pest then, at least not to him. And I don’t mind sharing if other MM patients read this and are helped by it.
And that brings me back to the question I wake up to every single day, despite knowing what I now know and continue to learn about this new normal for me; where do I go from here? First I count my blessings. And occasionally I allow myself a personal pity party, and maybe even a good cry, because it’s the healthy thing to do, it clears out some emotions that may otherwise cast a pall over my day. Then I grant myself a little grace, choose how I will live today, roll out of bed, put one foot in front of the other, and start down today’s path. I guess I’m learning to answer that same question every day by living life …
One day at a time … – Pops