A shorter posting this month as we welcome a new author to the site. I thought it best not to get too wordy as a person can only take so much of this “stuff” in any given month.
Two words: patience and impossible.
Patience: the capability of accepting or tolerating delay, trouble or suffering without getting angry or upset
Impossible: not able to occur, exist or be done.
I must be very frank with myself regarding the current situation that has settled onto my plate.
As a review, about 19 months ago we switched the drug protocol I was on from a Revlimid based protocol to a Pomalyst/Darzalex protocol. Since that time, we have tweaked and fused with dosage levels as a means of managing both my neutrophil level (keeping it above one thousand) and my monoclonal peak number (below 0.9).
Now it's September and my monoclonal peak is creeping up. We decided to increase the dosage level of Pomalyst from 1mg to 2mg/day last month and this month we saw a slight increase in the monoclonal peak number (my neutrophils were in the 1500 range). This was OK, no change in plans for another month. However, the realization that eventually (sooner than later) we will have to make more than just a change in dosage levels if this life journey is to continue has settled in.
Which brings me to patience. I really, really must work at exhibiting patience (as an aside, I cannot remember a single time that anyone ever labeled me a patient man). I have looked at this characteristic and believe that the key to my inability for exhibiting long-term patience is not tied to fighting acceptance, suffering, trouble, or delay (which is just another form of describing life in general). No, my trouble has been in the “not getting upset” portion of the definition. Naturally, this leads to this month’s second definition - Impossible.
Living with Multiple Myeloma has been tricky. On one hand it is a cancer that if lucky can be managed for an extended period of time (no definition of extended provided). So, at times I can pretend that my cancer is no big deal. On the other hand, it is cancer, a disease that has terminal implications. So, when my blood numbers come back not as I would like, patience in the treatment process goes flying out the window. I want “things” to be different. I want those numbers to be better. I want the blood draw results from the drug protocols to reflect a measure of success as defined by no monoclonal peak. I want it my way and frankly that is impossible.
The MM/cancer-life can make you crazy. You just never know exactly how you are going to respond to treatments. You never know exactly what side-effects will become a reality.
You just never know.
For me, the uncertainty of the future while living with cancer is like what the uncertainty of the future was while living without cancer, except for one enormous difference. And that enormous difference has to do with my ever-present awareness of my mortality.
Working on patience and accepting the somewhat “impossible” nature of knowing that no one knows what tomorrow will bring keeps me busy.
I am who I am and sometimes who I am gets in the way of a smooth sail.