“…. This is the worst/best trip, I’ve ever been on”
-- Beach Boys, Sloop John B
Happy Holidays to all who visit this site. May the joys of this Season extend to all of you throughout the coming New Year.
Well, here is the 12 month (that is right it has been one year) post-CAR T cell procedure update. I must write that I get somewhat teary when I consider that my last chemo infusion was one year ago. Oh boy.
So far, we are moving forward with minimal disruption. I am amazed that it has already been 12 months.
To review, last 12/26/23 I received my modified T cells and then spent one month in semi-isolation waiting for any health issues (expected or otherwise) to be settled. The first 30 days were rather uneventful with only one emergency visit to the hospital for an elevated temperature. Otherwise, the routine was going to the clinic each day, checking vitals, having blood drawn, then a visit with the doctor and then back to the hotel room where my wife (my required 24 hour/day caregiver) and I called home.
After 30 days I was sent home with routine 30-day check-ups to monitor my condition in place. At that point, my monoclonal peak (key MM marker) was still present but not measurable. Over the next ten months the appearance of a monoclonal peak diminished and finally vanished and as of today it is not evident in the blood work.
Strength and stamina have been affected by my MM however I can report that overall, I am grateful to be able to do all that I can do and to have the time to rest when I need to rest. My immune system is still very fragile. I go in for monthly injections to boost my neutrophil level. I also have had four IGIV infusions to help increase my G number which hovers in the low four hundred range. Initially, the IGIV infusion did cause some adverse side effects to where we could not complete the first two treatments. An adjustment to the procedure was made and the last two went off without a hitch.
What has become evident in the last twelve months is that my desire to continue moving forward and seeing what this journey has in store for me is mostly being fuel by the desire to continue with the “little things” in my life.
First off, it is the little things that take up most of my time. Experiences like walking to the grocery store, having coffee with my wife in the morning, a hot morning/evening shower and the smell of the soap, concocting a pretty-good home-made meal with good bread and good conversation, telephone visits with friends in Louisiana, Ohio, Wisconsin and Wyoming and other parts in-between are what makes my life enjoyable. “Goofing around” over the phone, with our two adult sons, is always welcomed.
I have found that I am still able to take on some larger adventures (such as fishing in Canada or visiting Acadia National Park in Maine) for which I am incredibly grateful. However, it is all the little things (and each of us can define that as we wish) that take up most of my days and which are the backbone of my journey forward.
I have come to accept that I cannot walk/run as fast as I once was able. I cannot watch a complete hockey game on TV if the game starts any later than 8:00 pm. And truth be written, I really am just not up for much of the mayhem witnessed at airports or freeways which are critical for traveling away from home.
There is an acute awareness of the finality that this life requires. I lost friends and colleagues during these past twelve months. They are gone and I am still here. That keen reminder of the impermanence and the unpredictability of this journey just about brings me to my knees. Who knows? Who will ever know?
And so, one year post CAR T cell procedure I am still writing, reflecting, struggling, and laughing. I am still in the game. And wonder of wonders, the other day I shot my best round of golf for nine holes in about … well one year. What a deal.
OK, I cannot shake from my head my thoughts and reflections on the nature of MM and the inevitable ending point which we will all eventually experience. They have a powerful presence.
Next up on today’s agenda will be yet again another walk to the grocery store. It is the Holidays, and I get to participate. Such good fortune, such good fate. I do not know how “this” all works and when this will change and then end.
I do know that I have much to be grateful for and that one year out I would have to give this CAR T cell procedure a hearty thumbs up.
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