So Much To Share! So many results and potential decisions to come! But today was my daughter’s 30th birthday, so most of this weekend has been devoted to partying it up :)) I did something this weekend so completely out of my fear of cooties character, tossing my fragile (and current Neutropenic again) status out the window, and living a little crazy this weekend!
But first the headlines:
Thursday I had my first PET CT Scan, and that, and the low glucose, low carb diet, and fasting prep, was an adventure itself! Normally, I pretty much eat whatever and whenever I want, and I tend to be like my hoofed animals, doing a lot of “grazing”, so this exact watching of Carbs and Glucose was Not Fun for me! I eat really healthy, trying to get something from each food group daily, but I also allow myself a cookie here and there, or fruit smoothies, or bread products, etc, so this 24 hours was an interesting experiment for me. Not awful, but I sure couldn’t be like some that eat Carb free!
Almost time to gown up and go in!
And then I didn’t do my math for the food-fast, in relation to my scan appointment time, so I wound up not being able to eat for over 16 hours! OMG, can’t remember being that hungry in a very long time. The night before, I had dinner and stopped eating around 8pm, then when I got up around 8:30/9am, I realized the window for eating had closed, as I had to fast 6 hours prior to the 2:50 Scan. Then I was involved in the Scan prep, which included IV radioactive glucose prep for about 30 minutes, then the scan itself, so that brought me to about 4pm! So do the math on that… I hadn’t eaten since 8pm the night before! Sorry if I’m sounding like a whinny wimp, but my system has changed so much since myeloma treatments, that I don’t do well starving anymore.
But I of course survived and bolted to our favorite Deli after my appointment, and ordered half the entire menu for take out :)) Wow, I just did the math on that, and… help me out here… 8pm to 8am = 12 hours. Then only water from 8am to the end of the Scan, at 4/4:30 is another 8 hours. So if I can add, I fasted for 16 hours. Silly me, guess I should have gotten up earlier, and pounded down some food before my fasting window closed. But, ugh, I just can’t eat first thing in the morning, when I wake up. Oh well, I survived and I WILL KNOW THE RESULTS OF THE PET CT SCAN TOMORROW, April 9th, at my Dr appointment, prior to my monthly Darzalex infusion.
If you recall from my previous posts, Myeloma’s on the upward bound again, and I am VERY CURIOUS what the Scan shows, and what my monthly Labs show, and what our next move is, if Myeloma is continuing to misbehave! My preference is to go back to more regular Darza infusions, as I was doing so well on the bi-monthly schedule. I wonder why the researchers didn’t include more instruction and protocol in the studies and literature for WHEN Darza stops being as effective on the monthly protocol.
Ironically, while I was in the Scan, I received email notification that my 21 days of Pomalyst had, predictably, plummeted my fragile immune system, and again I’m Neutropenic. Such a funny word, but related to our WBCs and Neutrophils. My WBC is 2.0 and my ANC a lowly .81. Boooo on that, but Zarxio Neupogen injections to the rescue!
Hello 3 days of immune system boost
But…….. here’s where things got a little complicated for me…
During the scan, they wrap you up like a mummy and you have to lie perfectly still for the entire Scan! I’m not claustrophobic or nervous for things like this, but isn’t funny how when you CAN’T do something, of course body wants or needs you to. So what wound up happening to me, is that I felt my back muscles becoming pinched. Normally one would just move a bit and readjust, but I knew I couldn’t so I stayed quiet and still, hoping my back wouldn’t seize. I felt stiffness when I got up from Scan, but felt walking to my car would loosen it up. Well the next day, it seemed to stiffen and pinch a bit more, and by Saturday, I was really really pinched and sore, and really began to limit my movement and bending over…
But wait… could this soreness be Neupogen Zarxio related Bone Pain?? Oh boy, here we go agian… what symptom relates to which event or medication. I did shot #1 on Friday, #2 on Saturday and just didn’t know if my tight and tense back muscles were Thursday’s Scan related or Zarxio related. But dang am I so sore, stiff and Advil, Tylenol, didn’t really have much effect in deadening the awful immobilizing pain. And what a time to have this, right in the middle of celebrating my daughter’s big birthday! C’mon myeloma, can’t you ever cut me a break?? So knowing we had BIG plans for Saturday night, it suddenly occurred to me, as I finishing up in the horse arena, hoping raking might loosen me up, it occurred to me to take one, just one 4mg Dex steroid pill as an anti-inflammatory. I NEVER take Dex late in the day, as I know it’s effects will keep me up all night, but I was pretty desperate for pain relief at this point. So I took the one little Dex pill, and did get a little relief, but was still sore for Saturday night’s festivities and still now as I write this…
But wait… there’s more dramatic news…
Here’s what I did so very very very out of character for me… and so very very very stupid and dangerous since I’m so incredibly immune compromised, and don’t have an immune system to fight off all the awful human cooties out to bring me down… I tossed my normally unwavering avoidance of human crowds, and public places at all costs, and went to a Country Line Dancing Club with my daughter and her friends for her birthday! YES, WHAT WAS I THINKING!! Well I was thinking… I JUST WANT TO HAVE FUN AND BE NORMAL! I’m such a social person, that being restricted by myeloma’s side effects really gets to me after a while. I feel like I am missing out on so much of life. So much of life that used I to participate in. But then again, I just hate being sick, so I just stick to being super ridiculously cautious 90% of the time, and it has really paid off, in terms of me avoiding serious illness. Here’s my recent labs showing my compromised immune system:
Barely gettin by…
Oh yikes, look at that ANC!
But I went, kept my antibacterial wipes handy, tried not to hug closely, did not shake hands, was super cautious with everything I did… but seriously, OMG, the crowd eventually became huge! Hundreds of people by late night. And as you know, being in a loud music venue, you have shout to talk or lean in when someone talks, and I just cringed thinking of all the COOTIES I WAS BREATHING. Yuk!!! … If I remain well this week, after cootie incubation time, it will truly be a medical miracle! But we had a blast, I stayed out late, and laughed till my sides hurt, and my voice was hoarse, as my back continued to hurt like none other…
This picture was early in the evening, when they were doing line dancing lessons, before the zillions of people eventually came. There wasn’t even room on the dance floor, it was so crowded! So many people, so many cooties. But sooooooo fun with my daughter and her friends! When we got home, I couldn’t wait to shower for hours, trying to drown the cooties, but of course that was too late, as just being there, I inhaled so much air borne yuk! I just kept shaking my head at myself, telling myself how stupid that was, especially right off Pomalyst, being on Zarzio injections, and so completely immune system depleted! Yep, I’m nuts.
Just a few of the groupies, zillions more all around!
And then today, we all went out to brunch, but this was just a much smaller group, on an outside patio, fresh air, and I didn’t do the beautiful brunch buffet. I didn’t even go look at it, as I didn’t want to torment myself. I order only well cooked food when eating out, avoid all fresh foods that can potentially contain unwashed or embedded bacteria, and don’t do drinks from the ice machine, as I’ve read, heard that is swarming with bacteria… so far my persnicketiness has worked, as I am rarely sick, beyond the annual flu season challenges.
Wow, I’m so lucky!!
BFFs since elementary school :))
The panda necklace I’m wearing is vintage 1990ish.
Panda’s were Alissa’s theme since a baby xoxo
Happy Birthday to my baby girl xoxo
So my loyal readers and friends, those are just the headlines, as there’s so much more detail within all this detail, but it’s super late, 4.8.18 is over in minutes and tomorrow is a big day. I’m counting on hearing the results of my PET CT Scan, seeing my the results of my recent labs, telling of myeloma’s status, then it’s IV hook up time for Darzalex. And yes, I am looking forward to the “calm” of the chemo lab, where Benedryl might knock me out, as it battles back the roaring 20mg or 40mg Dex roids I’ll take in the early morning. Many Darzalex recipients are anxious to try out the new shorter infusion time I’ve read is the trend now, but not me, I like the longer, safer, slower infusion time, not to mention, the possibility of sleep…
Thank you for reading and caring about my life and story. Knowing you’re out there, looking forward to my updates, gives me the motivation and commitment to keep on posting :)) Please let me know who you are, where you are, how you are, and how my posts impact or affect your life. I truly enjoy your comments, and you sharing your story with me!!
If I have BIG RESULT NEWS, I’ll post again before my next “on the 8’s” :))
Live happy, live well, and make a difference somewhere, somehow,
with someone or something as often as you can!