So where did I leave off… not sure, thanks to continual “chemo fog”!
Darzalex, Pomalyst, Dexamethasone are doing their thing… I hope.. as I really don’t know. Last “myeloma marker” labs were 4.13.17 and things looked pretty good then. But that was when I was doing this awesome Triplet Cocktail weekly. Per Darza protocol, I began the every other week regimen this past Tuesday, May 2. Things went ok, but I have to laugh about the crazy bi-polar experiences my poor body goes through.
I pre-med at home with 20mg Dex Steroids, first thing in the morning. Then I’m additionally “pre-medicated” at the chemo lab with a Big Bag of Benadryl and Tylenol pills. When I arrive at the lab, I’m full of life, actually feeling semi normal, and not in too much pain or GI distress. But when the Benadryl meets the Steroids, oooooo boy, it’s woozy woozy time, combined with the hyper-bounce from the Steroids. Hello bi-polar reax inside of me lol. I was chatting with my chemo friend Josie/Josephine, supporting myself on my IV stand, when I felt myself getting dizzy and woozy physically, and mentally woozy foggy. It was a weird feeling, going from ok, to drugged up. I finally gave in, and went back to my chemo bed, as I didn’t want to pass out and be dramatic. It really is amazing how medications/drugs impact our bodies. I never did much medication prior to my myeloma diagnosis, so all these side effects taking over my body, is still very strange to me.
Tuesday, Wednesday is still ok for me, as the meds are still romping around inside of me. But late Wed I begin to feel a bit icky and bloated, but not too awful. Thursday I definitely begin to wane, and often the GI stuff begins. But this Thursday, I managed to hold it altogether to attend a fun Relay for Life event. Crazy how many myeloma people I now know in my area. 2 of the ladies in this picture (in addition to me) have myeloma, the others are breast cancer survivors:
The Faces of Cancer
So by Friday, I really have waned, and the achiness begins. It’s like a slow wave or fog creeping into me and onto my skin. I begin to feel like I’m getting “sick” with a flu or fever, then have to remind myself, “O yea, it’s Tuesday’s “revenge” invading. I feel sick, but I’m not “illness sick”. My skin aches, my head aches, my body aches, I have metal-mouth. Fatigue moves in, and I just feel overall lifeless and yucky. I feel bloated, and know what that means… hello porcelain throne for a day or 2. So I’ve learned now that this chemo cocktail has a slower, more delayed crash, then Kyprolis back in 2015-2016. Since this crash comes several days after my infusion, it actually fakes me out at first, creating an illusion of thinking I might be ok… then boom, extreme fatigue, yuckiness, sleeplessness, loss of appetite, aches, pains, and just an overall feverish-flu feeling. Then slowly, days later, the side effect fog lessens, and I begin to feel a bit better by Sunday. But dang it, today I tweaked my left upper shoulder/neck area and have a stiff neck, achy shoulder. But I laugh, as I can’t believe the day I should begin getting a break, I get zapped by a random muscle ache. But hmmmm, maybe not so random, as I get these achy muscular, nerve things often now…
I managed to take my “Skeletal Bone Survey Scan” on April 25. I knew I wouldn’t know much until my upcoming Doctor appointment on May 16, which is also my next Darza infusion. So I wait and wonder.., wondering what the xrays will reveal. My last scan like this was a bit over a year ago, so I should have done this sooner in the year. I let the Rad Techs know of a few areas I was a little concerned about, and they made sure to scan most all of me from head to calves. See, back in 1998, I had a benign “Neuroma” tumor removed from my right side neck, shoulder, clavicle area. I remember for years feeling this weird bump clunking into my collar bone. It eventually grew to olive size. When I alerted my GP, he quickly scheduled me to have it biopsied. OUCH times a million! I remember it was so incredibly painful, and I totally did not expect the intensity of pain when the needle pierced the lump bump. Owwweee! Silly me, I had planned meeting family and friends for lunch after the biopsy, so clearly, I had no clue what biopsies felt like back then lol!!! Fortunately the lump was determined to be Benign. I had surgery a few months later to remove it, as it was bunch of nerves growing into the tumor, or the tumor was a bunch of nerves, so the Doctors were worried it could eventually cause right side dysfunction and a variety of nerve damage issues, beyond the immediate area. I recovered just fine from that, but still have some weird twinges in that area, but the tumor never grew back.
But sometime after that, I noticed I had a pea size bump on my right side skull, a few inches above my ear. Again, didn’t really give it too much thought, but over the years it’s grown ever so slowly to blueberry size. Yes, I’ve shown my Drs this over the years, but no one seemed too concerned, as it didn’t seem to be growing fast and didn’t cause me any discomfort or pain. I mentioned this to the Rad Techs, so they would make sure to image that area. I do think “something might be up”, as I received a call from Radiology that my Dr has requested another type of scan for me. I’ll call tomorrow and schedule that… Yep, the myeloma ride continues.. on and on and on. I just can’t catch a break…
In middle of all of this, I managed to attend the annual City of Hope BMT/SCT reunion. My myeloma buddy Gary (my neighbor, believe it or not!) and I went together. Big event. Big media event. Big celebration for hundreds, thousands of families, survivors and all of the medical staff members in the BMT SCT department. Quite a special event annually. I went through my blog and pictures and found most all my SCT reunion pictures. 2010 to 2017, pretty remarkable huh! Sometimes it really hits me how amazing it is, that I am still here. I never thought I wouldn’t be, but that was my minimalist denial side. The more people I meet, the more I read, the more myeloma groups and stories I read, the more I realize how remarkable it is, what I have been through and continue to go through. Some have it so much “worse” than me, and some have had remissions without treatment for years and years. Myeloma morphs so differently for everyone, and am really beginning to fully grasp what my form of “high risk” myeloma means. I get “bad” fast, but I respond to treatment fast. Then I become refractory to the treatment, have to formulate a new treatment plan, get better, then get worse. Then get better, then get worse. 7 years of this… wow…
Celebrating year #7
Myeloma buddies, Julie and Gary
Dr Farol and me
He will always remember that I was the only patient
that “never unpacked my suitcase”
during my July 2010 SCT :))
Gary, Dr Farol and me
My big cheese
Dr Spielberger and me
2017- Look at all those BMT SCT Survivors!
2016, my 6th year reunion
I did not attend as it was pouring rain that day
2015, my 5th year reunion
Me and Dr Spielberger, cupcakes in hand
Dr Farol and Dr Chai
2014, my 4th year reunion
Dr Kogut and Dr Spielberger
(Still looking for my 2013 reunion picture
which would be my 3rd year reunion)
2012, my 2nd year reunion
2011, my 1st year reunion
visiting the hospital floor where I stayed all of July 2010
July 5, 2010
The moment my stem cells arrive
and one of the reasons I am still here
And finally, here I am with my daughter
July ?, 2010, a few days after high dose Melphalan
and infusion of my stem cells… little did I know what was to come..
Yes, I have survived 7 years of myeloma treatments, and I have no idea what’s coming down the train track for me. Not sure if the cancer train is headed away from me, or coming right at me. I’ll be sure to let you know what I find out regarding what is found on the Scans. Not even sure what type of additional Scan they want to do on me, but I’ll know that when I call tomorrow. Until then, I battle forward, always optimistic, with a touch of denial, a pinch of WTF, tons of gratitude, and continual bewilderment that am in the situation I’m in.
Thank you friends and strangers
for reading, caring and commenting.
I love hearing your story too.
live well, and make a difference somewhere, somehow, with someone or something
as often as you can