For Now - Vigilance
- Mark Pajak
- Jul 27
- 4 min read
Thirty-one months since my CAR T Cell procedure in December 2023. No blood-draw in July (the new protocol is for blood draws every other month) as the numbers in June were steady and to our (the oncologist and me) liking. So, we are moving forward without any new information for the month. We shall see.
In trying to describe my current situation (both physically and mentally) it is most accurate to summarize that I am both incredibly grateful for the success of the CAR T Cell procedure and mindful that today is all that I have. There is still the ever-present need to be vigilant about what living with Multiple Myeloma requires of me as I continue. It has been noticed that when living with cancer, the ability to take on adjustments is critical for a smoother path forward.
Vigilant. According to the on-line dictionary that I use, the word vigilant is described as: keeping careful watch for potential or possible danger and difficulties. Yes, being vigilant is a particularly good starting point when describing both the beginning as well as the current MM journey.
There is a fine line to walk when being careful. I am not sure where I heard it first, but the adage “I would rather die while living than live while dead” often enters my mind when making decisions as the path is navigated.
A compromised immune system, which is fore front when describing the physical realities of living with cancer requires an awareness of potential potholes that may make the road bumpy.
So, what does that mean? Well, for the most part, crowded places, places where a large number of people gather, are still viewed as dicey predicaments. Grocery stores are visited when not too crowded. Airplane travel has been greatly reduced not because of a concern about the air flow of the airplane but because getting to the airplane requires going through the airport which often times is full of sneezing and coughing people (it is also often times full of people who are displeased or angry about something but that is an entirely different situation).
There is no foolproof method for eliminating all concerns. Wanting to attend a hockey game in person with 20,000 other people was at one time terrific and very much enjoyed. Now it might be problematic. What if the person next to me at the game exhibits the signs of having a cold (runny nose, coughing, sneezing, asking me if I have any tissues). I just do not want to get too close to people who have no idea that my immune system does not work as well as it once did. So, missing the hockey game is significantly less stressful than having to deal with a cold or flu. Yes, it can be disappointing. However, for me it is a small price to pay when trying to avoid additional, unwanted health issues.
Commitments made to attend social gatherings or special events come with an understanding that my presence is not guaranteed. OK, full disclosure here. Not once has anything ever been cancelled, delayed, or adjusted because of this uncertainty. In the eleven plus years that I have been traveling with my MM companion, never have I heard “Oh well, we will just have to cancel everything because Mark can’t make it.” Of course, this is a “good” thing. My presence or lack there-of, has never been of the utmost importance. Reasonable people adjust quite well to my absence.
When I was first diagnosed, I received five or six bottles of fine Scotch whiskey from friends who for some reason might have felt that drinking heavily would make me feel better about having cancer. However, early on, the oncologist who was treating me indicated that chemo is hard on the body’s organs and so refraining from or at least being judicious about activities that would knowingly add additional strain(s) on the body were avoided. The message I took home in this case was “lay off the alcohol.” Thus, we became an alcohol-free household.
This past month a very good friend of mine was diagnosed with a condition that has significantly compromised his immune system. He called me and asked me what life was like living with a compromised immune system. He was looking for hints, clues, or systems that he needs to consider as he moves forward. Of course, I had truly little to offer in the way of advice.
The reality is that there is no definitive answer for all cases.
Living life with MM/cancer or any other malady or condition that may have to be accepted as part of one’s new existence means living life as ……
Song of the Month
More Than A Feeling by Boston
Can you believe that it has been about 50 years since this song graced the airwaves. Man, I am getting old (which, by the way, is a “good” thing). I saw these guys in concert when I used to go to concerts. I loved the drums on this tune. A real blast from the past.
Enjoy.
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