Post Car T cell update at 11 months:
Hard to believe that it has been 11 months since my Car T cell procedure. At times it seems as if it was about three weeks ago and then at other times it seems like it should be about three years ago.
My blood numbers are holding steady, which is comforting. No evidence of a monoclonal peak and my next “zoom” call/visit with my oncologist is in two months as opposed to this month which I take as a positive sign.
There are still shots/injections to be had for a continued low neutrophil count and it appears as if another infusion down the road will be necessary for a continued low Immuno-G count.
There have been some little changes regarding the anxiety and mental state I seem to exhibit while waiting on the blood results. Those numbers still have quite a hold on me. It does not take much for me to recognize the precarious position that a person is in when living with cancer. I believe that when you live with cancer you are just more aware that your demise may be nearer than when you are not having to accept cancer as part of your life. It has not come easy however, I believe that I have learned to be a bit more accepting of that which will be. Yes, I still get nervous and anxious but not nearly as much or for as long as I once practiced.
Physically, I seem to be somewhat stronger and can “do” more before massive fatigue sets in. My stamina is slightly better. I can walk eighteen holes of golf though my playing partners understand that I walk slowly. It is November and so most of the golf is over for the year and I find myself going to the community rec center for some exercise on the treadmill and light-weight workouts. Sleeping through the night was/has always been a challenge. I am not sure that much has changed post Car T cell regarding that portion of my existence.
I have come to understand that it is difficult to know how one is “doing” because there is no foolproof, evaluative template which can be used for said evaluative purposes. At times, living with MM/cancer can become lonely. It is tough to describe the environment (more so mentally than physically). Generally, I feel ok, however I am nowhere near the physical specimen that I was when first diagnosed. Of course, that was almost ten years ago. The countless chemo protocols and drug treatments seemed to have accelerated the aging process. It is not hard to understand/believe that having MM in combination with living in general takes a toll on a person’s body. Notwithstanding, I truly feel incredibly lucky to be where I am right now today. No complaints – just an abundance of gratefulness for soooo many things.
I am not joking here when I write that every day as I wake up my body provides me with numerous aches and pains to experience. I am happy that I get to experience those aches and pains… Well, wait a minute, let us be real. Happy? Maybe not happy. How about I write that it is quite all right to feel those pains. The joys of another day will be forthcoming.
And that is a somewhat concise and honest assessment of life post Car T procedure for me.
As can be surmised, I really have never been too much of an exciting guy and that continues post Car T.
There is, however, one additional item that I must share.
This being November and with Thanksgiving coming right up (at least here in the States) it would be so re-missed if I did not at least, in some way acknowledge or explicitly state my thankfulness for one of the most satisfying items in my life post Car T procedure life.
You.
If you take the time to read these monthly posts, THANK YOU so much. The time that you give to such writing is greatly appreciated. It helps me find some purpose in a situation (living with cancer) that often times defies conventional, purposeful thought. The kindness you have expressed, the understanding that you have acknowledged or even sometimes the uncertainty of a differing perspectives that you shared via your story(ies) in the small write-backs to the site provide me with great joy. Again, thank you so much.
Turkey, dressing, mashed potatoes, cranberries, yams, or maybe even just a slice of pie. However, you choose (and by no means am I insinuating that food stuffs are the proper way to process) take time to celebrate the ability to be thankful.