15 Months/Tons

It has been almost fifteen full months since my CAR T cell procedure. December 2023 seems like a long time ago. Again, I am reminded that time seems to speed up as I get older and brother, I am so glad that I am getting older.

15 months ago, I received my re-configured T cells. Then 30 days of semi-isolation (daily hospital visits were the only excursions away from the hotel room which served as home away from home) waiting to see if any physical non-desired side-effects such as fever, seizures or other maladies would arrive. I did have to spend two nights in hospital because of a slight fever but not much else was of concern. Weak at first from the chemo dose prior to the introduction of the new T cells, I got stronger and thus after 30 days I was released back into the world so to speak.

Overall, the entire Car T procedure was not as taxing as the bone-marrow/stem cell transplant 9 years earlier. It was also much less taxing than the previous protocol which lasted 15 months and had me visiting the cancer center for two chemo infusions/visit three Mondays per month. That was a tough protocol. However, it was survived/tolerated as a means of staying alive.

Maybe the CAR T procedure was not so bad because of that previous experience where I just had to adjust and accept pain and nausea and lack of sleep and all the routine “unwantedness” (I just made up that word) that comes with most cancer treatments. I do not really know.

So today, right now this is what I can relate to others post Car T:

Since then, no chemo treatments. No trips on Monday mornings to the infusion center for chemo followed by about two days-worth of feeling lousy.

Since then, no extended stays in the hospital for cancer concerns.

Since then, no additional pills or prescription medicines have been added to my daily intake of “helpers.”  In fact, after this month I will be ingesting one less medication.

Since then, my strength has improved as has my stamina.

not to the pre-cancer levels of some ten years ago, but I am stronger today than I was one year ago.

Since then, no episodes of routine vomiting and severe headaches

Since then, no extended sleeplessness and agitation that often accompanied the steroids that were a part of previous treatments.

Since then…. Well, should I continue?

Or has it become evident that since then “things” have been rather good.

And yet, I realize (really, really really realize) that all that can change if and/or when the results of a monthly blood draw indicate that “oh oh,” something is beginning to develop.

Is it prudent to be waiting for “the other shoe to drop” so to speak? Can those thoughts be avoided? I imagine that it would be of significant benefit to stop worrying about what comes next and when will it happen. Stay in the now.

Look, I realize that Multiple Myeloma is not curable or at least it is not curable right now. Yes, I still have cancer. I am curious about what comes next when (and if?) the numbers begin to creep towards a definitive reason to begin assessing a possible next treatment protocol, a protocol that most likely is right now being assessed and developed on someone else for my potential benefit. That is how it works.

The realities of uncertainty and lack of control and not being in charge cannot be escaped from and in truth seem to be highlighted on the syllabus for moving forward with cancer. Acceptance and adaptation to what may come next makes constructing a new cornerstone for my journey an ongoing, ever-changing process.

I have found new priorities and perspectives. Sometimes they run head-on into conventional societal norms or behaviors resulting in a difficult or uncomfortable “fit” into mainstream culture. Oh well.

Never in my previous wildest dreams did Multiple Myeloma appear on the screen. How utterly inconceivable it was to me that someone could survive ten plus years with cancer. Now ….not so inconceivable and certainly very much grateful.

15 months after my Car T cell procedure I sit at this computer amazed at what has transpired. It is crazy. It, the thoughts, ideas, and memories, can overwhelm. Therefore, sometimes it is best to leave well-enough alone.

What am I most thinking about today? Well, making a tee time for tomorrow because the weather is supposed to be pleasant certainly is on the list. What is our plan(s) for dinner? Yes, that too. When will the blood numbers change and the chemo begin again if at all? - that also factors in the daily grind.

Sometimes I stop thinking and those days are just golden.

15 months and counting.

Song Of The Month

None other than 16 Tons by Tennessee Ernie Ford.

15 months, 16 tons, pretty much the same. He had quite a voice. Love the sound. The song certainly simplifies life, does it not? Enjoy.