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
Yesterday, Thursday January 12, 2017 was really my Friday the 13th! It was pouring rain here in CA, when I left for my afternoon Oncology appointment. Driving in the rain doesn’t bother me a bit, I rather enjoy it. It’s all the other crazies out there! That scares me. I’m cautious and smart, and drive an older model SUV, so I feel quite safe… UNTIL MY DRIVER’S SIDE WINDSHIELD-WIPER DECIDED TO BREAK, SNAP BACKWARDS INTO THE GLASS WINDSHIELD, HITTING METAL ON GLASS, FLOPPING AROUND, AS THE RAIN POURED CATS, DOGS AND HUGE RAIN DROPS! Scared me so much! The wiper whipped around, metal hitting the glass windshield, until I got my senses about me to turn the wipers off! I was driving over an overpass and couldn’t pull over, and by the time I could, traffic was moving so fast and recklessly, I didn’t want to take the chance pulling over, and not being able to pull back into traffic. Besides, what the heck would I do anyway. The wiper was broken, backwards, metal on glass, pouring rain, and I had an oncology appointment to get to. So I continued to drive in the blinding rain, without wipers. Scared the shizzz out of me, but I stayed in the slow lane, shaking my head, and thinking, what the heck life… what the heck are you doing to me! I’m done with challenges, tests and “excitement”. SERIOUSLY DONE! And this was before my appointment and the unsettling news to come…
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:
“scared” to start Darzalex and Velcade together. I was looking over
my recent myeloma stats and saw my Beta2 went down a whole point, the Beta
Globulin went down a bit too. The IgA only went up 10 points and the M Protein
would like to consider the following for this next treatment cycle:
full dose, 4mg
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
So sorry to be such a pain. Please let me know your
live well, and make a difference somewhere, somehow, with someone or something
as often as you can!