Sooo... there I am in all my mesh plastic glory (man, that's a cute little nose if I do say so myself). I had the joy of wearing this tight-fitting baby for 45 minutes today while Casey and Frank (my radiology technicians) burned the snot out that nasty shoulder tumor that's been hanging around for years. And yes, I most certainly am having that "pain flare" that my radiation oncologist said to expect. I give the Aleve another half hour or so to work and then I'm going to forage around for some leftover Percocet...
Back up, you say? Indeed. I realize it's been awhile since the old health update and there's been some...ahem...developments. I'll start with the PET scan results in December which were...not good. Growth in the existing tumors, some new tumors (2 in the spine, 1 in the left mandible and 1 in the right femur), and pain in my shoulder that's been varying in intensity, but never leaving. So in January my onc switched me to a new chemotherapy medication, taken in conjunction with 2 hormone medications (yep, back to shots in the ass!). It's a relatively new medication, has only been on the market a year and was fast-tracked by the FDA before clinical trials were even finished because it proved to be very effective at slowing disease progression for patients like me. Minimal side effects (no hair loss so those of you with a yearning to see me bald again are out of luck - yes, I'm talking to you Chris!), just mostly a little extra tiredness; tingling in my hands (but hey, that awful redness and dryness from the other medication is gone!); and low white blood cell counts (so have to watch for fevers and stick to a neutropenic diet). He'll scan again in late April/early May to see how well it's working.
The shoulder thing though. At first I thought I had a torn rotator cuff or torn labrum because sometimes the pain was really intense. I saw an orthopedist and he found nothing wrong, in fact praised me on my "beautiful tendons." (I'll take what I can get in the beauty department). So my onc reviewed the results and suggested that it was time for radiation on the shoulder tumor not only because of the pain, but because IF there's pain the danger of fracture is heightened. And that would be bad. Very bad.
Of course, having been through radiation 3 times before I was NOT looking forward to the "treatment 5 days a week for 3 - or 6 - weeks thing." Imagine my delight when he told me he could do "stereotactic radiosurgery" and take care of that sucker with ONE treatment. So last Thursday I went in for the "simulation," when they take the precise measurements of where they are going to direct the radiation beam. The mask (made by placing a warm, breathable mesh tightly over my face until it hardens) is used to keep my head and shoulders still during treatment. And today - well, you get it. Today is when we burned down the house.
So here I am again, hoping we've found another "miracle medication" that will keep this devil inside at bay for at least a little while. I'd gotten quite used to good news for so long, I admit it was a bit of a letdown. For some time I felt like I was right back to square one having to wonder and worry and fight the desire to just give up. Probably why I didn't share all of this right away (and then only with a few people). And I still don't know what to expect but I still fall back on my tried and true mantra - "This disease is going to kill me...but NOT TODAY!"
Now about that Percocet...
Blessings and Love to All.
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