By the time this is posted, I will be on about Day 85 post Car T Cell introduction/re-introduction. Day 90 is a big day because a blood draw and PET Scan/CT scan are all scheduled which will give us additional information as to how I am progressing with my Multiple Myeloma after this latest protocol treatment. Numbers from my latest blood draw are encouraging. So much so, that the scheduled bone biopsy has been taken off the board. I may be looking at a “chemo free” near future for a bit which would be terrific. We shall see.
It has been quite the time waiting and wondering. At this point, I am somewhat uncertain as to how to proceed forward. I am not sure what my life will look like if the results come back positive and I am told that for now the MM will be in a minimal residual disease (MRD) phase. Likewise, if the numbers indicate just the opposite, well, we will cross that bridge when we get to it.
There is nothing I can physically do to ensure the numbers and results are positive. Thoughts about both the protocol working and not working race through my head frequently. I would be less than honest if I told you I am singing, dancing, and having a great time. Let us just say I and the doctors are cautiously optimistic. For me, the “ride” is substantially easier when the train runs on a long level track. While I want to scream HOORAY, I probably will keep my excitement on the down-low for now.
All the pondering has led me to the question: What do I do now?
I have spent a good amount of time reflecting on the nine plus years of living with MM, trying to evaluate what “staying alive” has looked like. I never had/have given much thought to NOT trying to stay alive or not going through the various prior protocols. Yes, there were nights/days of vomiting, nausea and other unpleasant side effects of the drugs/chemo that certainly tested my resolve, but I understood that it was all part of the staying alive process.
I have always believed that my best chance at surviving and moving forward was to follow doctor’s orders. So that is what I have done. That was/has been my job. Physically, I have felt/feel ok. Not like before cancer but not too bad. I work on my mental and emotional well-being as much as my physical well-being. My mind and heart have felt extremely comfortable with wanting to continue enjoying the gifts that I have been given in my life. So, you bet, I wanted to/want to stay alive.
But what about now? What do I do if I get a break from the chemo infusion, steroids, and weekly blood draws?
I have been given ample evidence to understand that just because I want something does not mean that it is for me to have or will be easy to achieve. No matter how hard I “wish and hope” much of what has happened and will happen is out of my control.
At this point in MM research and treatments, the goal is to manage the disease. There is no discussion about cure. There is no “silver bullet” or “magic pill” that will provide any of us with exactly what we desire (which is a moving target anyway) for as long as we desire. Life does not work that way.
Waiting and wondering. A remarkably familiar place when living with cancer. But this time, for some reason, it feels different. Now, there seems to be more at stake. Maybe I am getting tired of having cancer. I have been through four different treatment protocols. Each has been effective to a degree (we have managed the disease) however as stated before there is no cure.
While personally never having to face the situation where there are no options left, no treatments available, I know that eventually I will need to face that head-on. Eventually, we all end up in the same place.
If the tests results come back positive, if I get some time away from treatments and blood draws well, I must again remind myself: “Mark, do not waste this latest gift. Take some time to define constructs such as worthy, important, and meaningful and try to apply yourself towards those constructs.” Frankly, no matter what the test results show – positive or not this probably is an exceptionally good time to follow that path.
Since being diagnosed I have been blasted with the reality of my mortality. I am not going to have a cake for my 1,000 years-old birthday.
The life clock constantly ticks. I do not know when the clock’s batteries will run out of juice.