Can I say it again… Yep, I thought not much would happen in just 10 lil days between posts :)) But who am I kidding, this is life on the Myeloma Roller Coaster!
Not long after my last post, I took my myeloma status labs. I was really looking forward to knowing how I was doing, since beginning the 2nd phase of the Darzalex protocol. See, for the first 8 weeks, Darza infusions are every week. Then beginning week 9, infusions are every other week. Then beginning week 25, infusions are once a month. Got that? Here’s the dosing “fine print”.. It’s really confusing at first, then it all makes sense. With my plummeting numbers and treatment success (in just 2 months from the initial weekly treatments), I was very curious how this 2nd phase treatment, every other week, would fare.
What’s your guess what my IgA did???
Whhaaat? Yep, numbers don’t lie. Up I go again. Can you believe that? C’mon Myeloma, stop messing with me. I laughed when I saw this. Shocked? No. Surprised? Yes. I really thought I’d have at least a few months of stability, and if I was “lucky”, even continued declining stats. Oh well. Not the case. Honestly though, I need this reality slap, to get me out of my denial bubble. I need a wake up call reminder as to why my diagnosing oncologist referred to “my type” of myeloma as “high risk”. My pattern- I respond well to initial treatment, but then “unrespond” fast and furiously, becoming “refractory” to the medications, and my myeloma gets aggressive fast.
Fortunately, this month’s results might not be as mysterious as some of my other roller coaster ups and downs. When I met with my Dr back in May, at the start of the every other week protocol, we discussed my great response to the Darza, Pom, Dex combo, and decided to lower the steroids from 40mg per week to 20mg, as I’ve been on Dex steroids since mid 2013 continuously (except for initial treatment in 2010). I was happy to give this a go, as I do worry what non stop steroids are doing to my body, while helping to pummel myeloma.
So for the remainder of May into June, perhaps the lower dose of Dex did affect the impact of Darza and Pomalyst? Plus, if you know me, and you.know.me…, I took the opportunity to lower the steroids a step further. In light of the new every other week Darza dosing, I went ahead and opted to NOT take the Dex steroids on my Darza week OFF. So not only did myeloma not have Darza attacking it weekly, myeloma got a break from Dex steroids smacking it around too. Oooppss! Maybe not such a good idea. Ok, ok, I will do Dex weekly, regardless of the Darza break. (Yes, this was all discussed this with my Dr, and she of course agrees.)
And if all that doesn’t spin your head, let’s not forget the 3rd component to this “Triplet Cocktail”, my pal Pomalyst, and Pom decided to throw me a curve again too. Can you guess what my recent labs also showed? Yep, Low low low WBCs. Hello to Neutropenia again
. And the irony, guess what I had been doing recently? Everything someone Neutropenic should not. If you recall my previous post, I was so excited how well I was doing after seeing my mid May labs, I went to my office- (cooties), went to the grocery store- (cooties), and was excited to buy, prepare and eat FRESH fruits and veggies (cooties). All this, not knowing I was Neutropenic again
, and “should not” have been exposing myself to all those potential pathogens! Fortunately, nothing bad came of my “wild adventures” to my office and public places, nor from eating fresh fruits, veggies and Bleu Cheese dressing! As compromised my immune system is, I somehow manage to stay quite healthy. Must be all the ranch dust and animal activities strengthening my immunities (lol), and all my OCD anti-bacterial contamination precautions that everyone laughs at me for :))
Of course I was eating “everything” (fresh), I should not have been..
But so yummy to enjoy, to feel carefree
and feel “fake healthy”, not Neutropenic for a change!
Not long after seeing my lab results, I knew the phone calls coming in early Monday morning were my awesome Dr and Nurse, informing me of my status and they had already sent the prescription in for my WBC immune system boosting Neupogen Zarxio shots
! Here we go again. Cowgirl up Julie, grab that belly chub, get that needle full of that magical serum in, boost those cells right back up! Welcome to my ever present, unpredictable predictable myeloma roller coaster.
I’m so brave now…
Just had to wrap my head around
“This Is My Life”… forever
How about some good news:
My Serum Protein Electrophoresis, M Protein, still shows as “Abnormal”, but “Undetectable”, so although my IgA is showing upward movement, I’m hoping it’s just a fluke this month, due to the reduction in meds. My other labs are trending pretty good, generally in the low range, and if I’m lucky, the low low edge of low-normal. So overall, I would say the Darza, Pom, Dex cocktail is doing it’s thing and keeping myeloma suppressed, even with all the ups and downs.
I’m often asked how I pass the time during the 6 hour infusion:
Lots of selfie practice
which entertains the other patients
Lots always going on in the chemo lab and
I’ve gotten very proficient texting and writing one-handed
And wonderful nurses and patients too chat with
And other types of “cocktails” to dream about!
All in all I am so very lucky to be in the circumstances I am. Wow, 7 years fighting this monster. Can you believe that. There are so many patients that haven’t had the treatment success and luck that I have had, so I count my blessings daily. Do I eat only “organic” now? No. Do I eat and live healthy and balanced? Yes. Do I remain grateful and optimistic? Yes. Do I do anything extreme to compromise my health? No. I have a busy and rewarding life, but incredibly limited compared to my pre-myloma life. Am I bitter? Sometimes. Am I depressed? No. Am I angry? Yes. Do I accept my circumstances and situation? No and Yes. I am still in disbelief of my diagnosis, but I accept what has been dealt my way, as I know… “I cannot control the things I cannot control”, so I constantly analyze it, try to understand it, research it, and always move forward, finding happiness and delight everyday, no matter how yucky I feel, or how pissed off at myeloma I am.
And then it hits me. I’ve had to confront, process, treat, deal with Myeloma mentally and physically for over 7 years now. Constantly. Not a day goes by that I cannot not think about Myeloma. I have cancer. Incurable cancer. For the rest of my life. It is me, and I am it.
live well, and make a difference somewhere, somehow, with someone or something
as often as you can