Sometimes in the moments after I first wake, whether from a nap or a night’s sleep, before I shift or move any body parts, I feel almost normal. I’m not yet reminded that my achy left arm doesn’t always respond to my brain’s commands, or that the inflamed, tightened skin across my chest makes me feel like I can’t get a deep breath. I haven’t yet tried to turn my head against the pull of fibrotic tissue in my neck and shoulder, or begun to putter around on legs weakened by loss of muscle tone. For a few blissful seconds, none of this cancer crap ever happened, I feel healthy and strong, and I’m gonna get at this day and make it all mine.
Of course, I do eventually have to get out of bed.
You may have noticed that I skipped posting last week. I don’t like to be a Debbie Downer, and frankly things have been kind of tough lately. I don’t want to whine, so I’m shooting for a brief, honest update, and maybe by next week I’ll have reverted to my default optimist setting.
So, I had the esophageal stent placed. That went fine and seems to be helping, though I still have a small appetite and can only eat small amounts of food in a sitting. The doctor showed me the images of my squeezed esophagus, and it was shocking. He also drew a picture (see below). See that narrow bit below the dark scribble about the width of yarn? That was my esophagus before the stent. I totally understand now why I’d been having so much trouble eating, and why he was throwing around the possibility of a feeding tube. It’s a miracle anything was getting through.
So that was sobering. Two days later I had to go back to the hospital for a port study and possible replacement. My port is working fine, it turns out; there’s just this odd open spot in the skin over it that won’t close. All were in agreement that making more cuts into that skin would likely only exacerbate the problem. So I got stuck for two IVs that day, but thankfully no surgery.
I came out of that week feeling super puny, as I had to fast the days of both procedures, and I wasn’t exactly the queen of nutritious intake going in. So I’m still trying to regain strength and stamina, as well as conquer a nagging cough that is likely being triggered by some nerve damage in my vocal cords. I’m still having to grind up every pill I take, or suffer through the liquid form (how hard would it be to make medicine that at least tastes not-vile?) Some good news: the Restylane injection in my left vocal cord seems to holding up well.
I’ve been blue, struggling with all this, and while I’m all for honesty, I don’t really like to burden others with my troubles. I will say hubby Steve has been an absolute rock through it all, and he deserves all the huzzahs! And I don’t know what I would do without the constant joy and affection of our feline crew. I know I have many kind people rooting for me too, and for that I am ever so grateful.
Even with all the aches and pains, I’m still glad to be able to get up each day. Next week I’ll receive dose 3 of the new regimen. Wishing you a fun and safe holiday weekend!