It is not about more.

First an update:  It has been almost 150 days since I received my reconfigured T-cells and according to the most recent blood draw results all is as the docs and I would like it to be. My M spike, which has always been the most telling marker as to the condition of my cancer, has been reduced to nearly undetectable. For this I am grateful. Again, I realize that we are managing as opposed to curing.

I was visiting with and listening to my doctor regarding what comes next in my treatment as we continue to move further away from the re-introduction of cells, and I was very curious as to the expected effectiveness of the Car T – cell procedure. I was interested in “how long” I could expect to be free from chemo treatments and steroids. Without specifically asking, I so wanted to know about a life expectancy figure. And, as usual, I was given some vague answer that implied “no one knows how long this will be effective.” Not surprising given that at times cancer treatment seems to be as much art as science.

Afterwards as I was driving home from the hospital, I was somewhat taken aback by my desire for some type of “timeline” that would describe the protocol’s effectiveness. I was somewhat embarrassed at my tunnel vision regarding life expectancy. Have I not learned anything? Why even ask “those” kinds of questions.

Too often during this Multiple Myeloma cancer journey I have come to the realization that I have at times viewed myself as a type of “commodity” that has an expected life span. And for some reason, life span is what has been of prime importance and consideration. We buy cars that will last. We buy quality shoes and clothing for the purpose of making sure we get our money’s worth. Often value is placed on lasting a long time.

Undoubtably, the primary reason behind going through all the previous protocols and the Car T procedure has been to extend my life. I want to/wanted to live longer. I was not ready to die. Life has so much to offer, and I want/wanted more.

Well, now I am not so certain that this can be considered a wise or preferred mindset to hold on to. Look, I am not saying that living longer is to be discounted or abandoned. No, that is not what I am saying or feeling.

One of the lessons that has been learned in my life is that the distance traveled is significantly less important than the travel itself. The journey is what is important. Yet, many if not all the treatment protocols experienced have been done so with an emphasis on “getting” another day/month/year without very much thought as to the experience at hand. The goal is to survive to live longer. What? Does this not run in some contradictory way to the message of the journey being important? A conundrum of sorts for sure.

So, what about the journey? What about the struggles with chemo and with not sleeping and with blood numbers? What about the various protocols and adjustments that are made when dealing with cancer? It seems that all of these are based upon the desire to want more life. It seems as if the focus was on the results as can be expected however done so at the expense of the journey itself.

What a fool I can be.

I suppose that being interested in “days remaining” is what drives progress and acceptance around medicine research, treatments, and such. The desire to extend the number of days remaining is what these protocols and treatments are about.

Ok, intuitively it appears as if all the above is well and good. However, how about adding to the statement above “as long as it is accepted as part of the journey and not looked upon or focused as just a means to or for more.”

Looking at that last bit certainly seems a tad counterculture. It also seems to be especially important. It reads quite contrary to many of the other messages that I may receive from just about everywhere else in daily life.

It is so genuinely nice not to be taking chemo infusions. It is so genuinely nice not to be tied to hospital visits every day/week. It is so genuinely nice not having to experience the ups and downs of steroids which I had been using for over 9 years.

What about this journey? What about the past nine plus years? What about managing Multiple Myeloma without the focus on “more.” Is it the preferred or recommended track to follow?

We are managing a disease. We are trying our best to reach the next day. Moving forward, must I remember to stop being fixated on asking, looking, or experiencing this journey with the “how long” or “more” focus.

Probably a pretty sound plan.