A Need To Purge

(Maybe I need a vacation)

Twenty-one months since my CAR T cell procedure, and my cancer numbers are holding steady. The monoclonal peak is undetected and my other blood markers are in a range that the oncologist finds quite acceptable. So, SO incredibly grateful.

However, Multiple Myeloma does not “go away.”  Right now, I am fine. The next blood draw may prove different. Life moves forward. And as it does, change will occur, and the good times may stop rolling.

What happens when a person wakes up knowing that they have an incurable disease, albeit one that can be managed for some length of time - if they are lucky? That thought accompanies me as I get out of bed each morning. Reality without any sugar coating.

How does one adjust or adapt and/or develop a mind-set that accepts/and accommodates such a situation?

Living with cancer is my life. I am very mindful as to how much has gone right to be in a position where I am 21 months out of a CAR T procedure. Acceptance of my reality and the ability or desire to make the necessary adjustments of living with MM have become two important components of everyday life. Remembering the most important choice I have and the only one that allows me some semblance of control - my attitude – has been of tremendous benefit. It is up to me.

OK, so far so good …. except I am not perfect. And that which has been presented above is fine as long as I ….

Look, being completely honest here - sometimes I get so tired of having MM.

I get tired of having to be careful about getting too close to people at the grocery store for fear of getting some germ. I get tired of going to the hospital for yet another blood draw. I get tired of waiting at the hospital for the nurse to come out and get me for my blood draw. I get tired of taking so much medicine and pills and getting more shots. I get tired of never being able to forget that I must be careful and mindful of this or that because my immune system is shot. I am at “risk.”

And sometimes I get angry, impatient, ornery, and frustrated. I get lost and then loud and demanding and I get nasty and short with others. I tend to swear and use language that most would deem inappropriate among the kind and considerate people who are helping me move forward. I can be a real arse. Then I get so mad at myself for being such an arse. It feels terrible; so terrible that I cannot get to sleep because I feel so bad about how I acted or what I said.

I question everything and everyone looking for what – answers? I want answers now, knowing they are not available.

I want my prescriptions to not run out so fast so that I can minimize going to the pharmacy and wait in line again and again all the while hoping that when I get to the window it is the right dosage of the right medicine. I do not want to deal with or hear someone tell me that I have entered the insurance “donut hole” portion of the year where for some reason I get to pay more. I used to have a warm feeling for donut holes. They were tasty and sweet and went so well with morning coffee. Now a revised definition of such has entered my mind set and it is not sweet and tasty.

Whoa - well now – that was quite a purge.

Feel better? Not really.

This is why I do not feel better. Because I know for sure that this life, these struggles, this up and down roller coaster of a ride is all a big, wonderful, beautiful gift. And I have been lucky. What a wonderful gift.

So tomorrow, if my luck continues, I will wake up on my side of the bed, get up out of bed and put on my slippers, walk into the bathroom, and look into the mirror to brush my teeth and wash my face and be so so grateful. I will be filled with gratitude and wonder over the fact that I am among the living.

And then I will get dressed, walk out to the kitchen and turn the coffee machine on, get my coffee cup out of the cupboard, and wait for the machine to do its thing so that I can savor that first sip.

And just like that, no more purging is necessary or desired. What a life. Bring on the adventure. And I suppose this perspective comes about because I know that someday it will all end.

But that is ok too.

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Song of the Month

Two Blue Chairs and You by Zac Brown

There is not much to write about other than to mention that vacations can be wonderful. Just ask Zac Brown. Enjoy.