Shucks

Expectation: A strong belief that something will happen or be the case in the future

Disappointment: A sadness or displeasure caused by the non-fulfillment of a hope or expectation.

Happy Thanksgiving. May the joys of the season extend to all readers.

When I went in for my Car T Cell Procedure, I was told that I could expect about 12 – 18 months without treatment (chemo). As time progressed, that estimate was raised to 18 - 24 months. November 2025 marks twenty-three months removed from the Car T procedure.

And for some reason, I am getting somewhat nervous about the two-year anniversary.

With any Multiple Myeloma (MM) treatment there is an understanding that there are no guarantees. As much as it would be preferred to have the doctor definitively declare that everything will be fine for a long long time, that is just not the case. Remission or minimum residual disease status resulting from any protocol does not come with a guarantee. No one knows for sure how long the effectiveness of any treatment will last. And so, projections are made reluctantly and with a patient understanding that it is all a big “MAYBE.”  If you have survived today, well that is good. Tomorrow – well that is not guaranteed.

Given that it is not possible to know for sure regarding protocol effectiveness and the ability to survive, it is critically important for the cancer patient as they are moving forward to manage both expectations and disappointments.

First” Expectations.”

It has been soooooo wonderful not needing any chemo infusions over the past twenty-three months. So wonderful in fact that I sort of began to have an expectation that maybe, just maybe I could go 30 months or 40 months or 60 months or one hundred months without another treatment for MM. Know that no one ever indicated as such (18 – 24 months were the limits) however I in my infinite wisdom could not help myself.  My mind just took me on this strange journey where I got to expect that it would be a long time before I would have to be concerned with active MM.

And now while the most recent blood draw in November indicated no appreciable notice of monoclonal proteins, there was nonetheless a non-quantifiable amount indicated on the results report.

Oh boy. What does that mean? Does it mean that the cancer/MM has become active? Does it mean that I must begin treatments again? Am I closer to dying? AGHRRR.

Now “Disappointment.”

Disappointment was felt after the November numbers came in. So many questions were considered. Will I have to begin treatments again right away? Will I again have to contend with the after-effects of a chemo infusion? Does it mean I will again have to drive anywhere from 50 to 90 minutes on the freeway to get to my appointments at the cancer treatment center?

Trust me when I write that a mind can travel a million miles in a noticeably short period of time. And it can do so without any substantial evidence that it is traveling in the correct direction.

In November, both expectation and disappointment were noticed/entered as part of my existence.

Yes, there was slight evidence of some monoclonal proteins however, it was so little that it could not be quantified. Yes, my numbers moved but according to the doctor, not in a troublesome direction and certainly not in an amount that would cause much concern. Quite possibly the movement represents a leveling out of my immune system after the injection of stem cells received in September.

And so it goes. Maybe. We will just have to wait until next month’s blood draw reveals an updated picture.

Even after almost 11 years’ worth of managing and living with MM, I still created for myself a reality that includes expectations and disappointments. How could I have gotten myself into this pickle? Have I not learned anything or known better?

I am not writing that since the CAR T procedure I have lived in a world of make believe – a world that allows for the conquering of MM. It has always been clear that all these protocols and procedures are available as a means of managing not curing. And trust me when I write that almost two years’ worth of no chemo has been appreciated.

I am fairly certain that not much will change in the method being used to manage my MM for the coming month. I am feeling fine and I am not scheduled to meet again with the Doc until January of 2026. In the meantime, its business as usual – except, well, I am uncertain what “usual” looks like.

I must remember that potential hazards can appear when expectations dictate the path moving forward. I must also understand that disappointments can often be minimized if results are looked at from a different perspective.

So, move forward, fingers crossed and trusting that….

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Song of the Month

Wish You Were Here by Pink Floyd

Pink Floyd. Wish You Were Here.  Well my friends, it is difficult to get much better.

Released 50 years ago, Roger Waters describes/notes his interpretation of the lyrics as being present in one’s own life and freeing oneself in order to truly experience life.

A wonderful reminder for this month.