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!
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!