Decisions, Decisions… Treatment Changes Scare Me!

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Friday 1.13.17

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…

This could have been my windshield, 
had I not turned the wipers off when I did!

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!  
My Dr wants to stop Pom and start Darzalex and Velcade, along with good ol Dex steroids. As in start next week! Darzalex SCARES ME! I have read a lot about it, from Research sites to Pharma sites to Patient sites. The initial infusion of Darzalex SCARES me! Google it, read patient blogs and infusion insanity! (Besides, isn’t it targeted to IgG myeloma, and I’m IgA?) Remember I skipped right past Velcade for Kyprolis, Nov 2015, because of all the reports of terrible Neuropathy with Velcade. Ugh! I hate myeloma, and hate that I am controlled by myeloma and what it is doing to me and that I have to take meds or die!

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… 

 Ok, so Beta2 went down 10 points ^

 These don’t look too awful ^
Ok, ok, yes… my IgA went up 10 points ^

Ugh, M Protein up too ^
My lovely compromised immune system
And yes, this one says it all: 
ABNORMAL! :))
I was grateful to return home safely, but not a happy camper psychologically. Still “shell shocked” Pomalyst wasn’t killing off myeloma cells as I had “expected”, stunned that my labs weren’t better with plummeting myeloma stats, and overall just sad about the status of my life. So what did I do to “rebel” and feel better? Put on a coat, rubber boots and went out to my “happy place”, the horse arena, and scooped the horse poop in the pouring rain. Quite fitting, don’t you think? Shoveling poop, in so many ways, in my life…

 Pouring rain here.
These pictures don’t tell the downpour story!

 Happy horsies, clueless to my situation

 And it cleared a bit,
then poured some more
I sloshed around and processed my situation
Poop here, poop there, poop everywhere in my life

Here’s what I wrote to my Dr late last night:

Hi Dr P,
I’ve been doing a lot of thinking and reading, and I am
“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
.27
I do realize my upward trend, but if you are ok with it, I
would like to consider the following for this next treatment cycle:
1- continue with Dex and Pomalyst for one more month, but at
full dose, 4mg
2- or try Dex and Velcade
3- or try Dex, Pom and Velcade together
4- or try Darzalex singularly

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. 

She’s gone for the weekend, as her RN called me back… so we’ll see what she says early next week. I was also informed that I was already scheduled for the chemo lab for Thursday, Jan 19… ummm NO!!!

Ok Myeloma Patients Out There… Help Me Out… Your Opinions Please!

Today, Friday the 13th-
Pondering: clouds, thoughts, choices,
fears, frustrations, sadness, anger
But it’s hard to stay upset, when so much beauty
surrounds me…


Live happy,
live well, and make a difference somewhere, somehow, with someone or something
as often as you can!