Yep, it's Friday the 13th... perfect day to already break my "on the 7's" theme posting, as I have news, labs, numbers, results and big decisions to make as a result of my oncology appointment yesterday 1.12.17
So I made it to my appointment alive, and my Dr brings up my labs with a worried look, and let's me know she is very concerned with the upward climb of my numbers. Bottom line: Myeloma is winning over Pomalyst. Pom is barely making a cellular dent... Time to change the treatment plan AGAIN. Ugh!! Nooooooo!!! C'mon Pom, please work! We got off to a rocky start in Nov and Dec with all my crazy allergies, head cold illness and crazy pinched nerves back issue. Maybe one more month will make a difference I plead. I am less and less brave about this cancer thing every year, every change in treatment. I am so fearful of new and awful side effects. I've got the crash cycle down, know fatigue all too well, GI stuff in "control", neuropathy not too bad, etc... I'm just starting to be friends with Pom... perhaps that's the problem: If chemo DOESN'T cause dramatic side effects, maybe it's not working?... see Pom and Dex steroids are giving me the opposite problem Revlimid did... going from unpredictable volcanic diarrhea with Rev, to both diarrhea and being corked up with Kyprolis, and now Pom and Dex fully cork me up. Maybe it's all the myeloma cells corking me up? LOL, sorry to the non-patients reading this. Us cancer patients talk about our GI issues and body side effects like "normal" people talk about their social plans!
So after discussing my labs, and various options for treatment and meds, I gave in, and said "yes, ok Dr, you're the expert, you know best, I will try this new regimen..." I drove home teary, sad, mad, frustrated, and incredulous, that this is what my "life" has come to. I'm tired and worn down from 7 years of this battle. I want to feel good. I want to play. I want to be "normal". I want to make "superficial" plans like everyone else. I want to work, play, go places, other than appointments related to myeloma. I just want to live an uncomplicated life...
Fortunately, it wasn't raining much driving home. Just misty, so I did ok without functional windshield wipers. Broken wipers. So symbolic. Rain streaking across my windshield. Tears slipping from my eyes. A broken, upside down wiper. Me, broken, my life upside down...
Here's what I wrote to my Dr late last night:
Last option, I don't think I am ready for is the combo of Darzalex and Velcade, as side effects from 2 new meds may be overwhelming for me.
So sorry to be such a pain. Please let me know your thoughts.
Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!