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The insurance company has been bugging me to submit some forms to apply for social security disability, and I’ve been a real stubborn bitch about not sending it in. Finally did, thinking “This is completely stupid, social security means permanently disabled, which I am not. I just need a few more weeks to get through radiation.” But Friday in the shower, I started thinking “The lady from the insurance company is right to ask for that stuff. I’m not getting any better, and in some cases, I’m worse. Nails hurt worse than ever, the nail on my left thumb is definitely jacked, and I’m probably going to lose the nails on both big toes. My feet and ankles are throbbing right now, and I shuffle around the house like an old woman by the end of the day, even if I’ve been sitting on my ass the whole time. I’m so tired, I want to cry.”
What if this is it? The painful feet, the fatigue after doing simple things, like taking out the trash AND doing one load of laundry, when I think for 5 whole minutes “Oh, yeah! It’s all coming together now!” And then my fatigue sneaks up on me from behind, taps me on the shoulder, and says “Wait a minute, stupid. Wham!” I hit the wall so hard, it takes my breath away, and I flop into a chair, panting and frustrated, because I see 10 more things that need to be picked up/put away/washed/thrown out.
So I whimper, grind my teeth, and say a curse word or two, or vent at Ken through my tears. Then I give up for the day, and find an old episode of Perry Mason or Bones, and veg out in front of the television until the kid comes home.
But a couple of days of that, and I’m right back up, running smack into the wall again. Over, and over, and over. But here’s what I finally noticed today. I run into that wall, true, and it hurts. But every time I run into that wall, I move it a little farther, and farther out. I did three loads of dishes yesterday, and cooked dinner last night, and I wasn’t completely out of my mind in pain, or exhaustion. Woke up today (despite the continuing insomnia) and my feet weren’t completely on fire. I’ve done two loads of laundry, one load of dishes, and I’m still standing. I’m thinking, maybe I’ve turned a corner. Maybe I’ve finally broken down that wall. Then I get in the shower, and there go my feet, there go my nails again. And there goes the all over body ache. Shit. All I’m doing is standing in the shower, and BAM! There’s that f-ing wall again.
But also notice I’m still standing. I might need a nap in a minute, but right now, I’m still standing.
We are about 24 hours post final paclitaxel infusion. Final infusion was a lot better than the week before. Last week I left absolutely drained. I’ve never felt that poorly afterwards, not since the dose dense A/C cycle. Maybe the premeds didn’t have enough time to take effect, but I felt like I had always expected a cancer patient to feel. So worn out, I was ready to cry. I couldn’t even look at people, I just followed Ken to the elevator, to the car. Once in the car, I was very upset. My hands tingled so much (I think I wrote about this last week) I was frightened, sure I was having some kind of horrible reaction. So I was worried going into this last one. Granted, I felt kind of loopy from the Benedryl, but not so completely worn out as the last time.
Later that evening, watching Halloween Chopped with the husband and child, I was so tired I could barely keep my eyes open, and so uncomfortable, I shifted in my seat and moaned and whined for 45 minutes or so. Ugh. By the time Ken shut off the television at midnight (the kid was already tucked in for the night), though I was ready to go to bed, I was WAY too restless to sleep. Ken was in his office, checking for work email and putting on his computer, so I got up and went back to the family room to read. I’ve been obsessively reading Phillippa Gregory historical novels, so time passes more quickly than I realize, and soon it was after 3am. Still I was not sleepy, and kept reading. Finally, I got sleepy and went to bed after 4am. At 6:30am or so, the kid woke me up. And for once, I was not bitchy and “hung over” from lack of sleep.
So here I am on 2 and one half hours of sleep, and relatively speaking, I feel pretty great. Granted I’m not super active, I have only done one load of laundry, one load of dishes, and finally folded the towels that have been sitting on the couch for the last three days. I was in my pajamas until after 2pm, and am still wearing warm-up pants, rather than jeans, so while I’m clean (I showered), I’m still basically wearing pajamas. I hope I can get my jeans washed and dried before we have to leave for the craft store. I have only two pairs that fit me right now. Did I mention that I was 40 pounds overweight before I started this process, and I’ve gained another 27 since I started the paclitaxel. And no, I can’t blame this all on the steroid, though it isn’t helping. Ugh.
So why do I feel so good on 2.5 hours sleep, when on 4-5 I’m usually groggy and pooped out? Maybe it’s the fact that we’ve eaten a proper dinner the last two nights, complete with lean protein and a vegetable. Holy crap, how’d I pull that off two days in a row? Never mind, I won’t ask questions, I’ll just go with it…
Maybe it was the hazelnut syrup my husband brought home for me last night, and cleaning the espresso machine, so I could make my favorite Friday morning treat, a hazelnut latte (Thanks honey! XOXO).
Or maybe I’m still buzzing off that half box of Dilettante Café Creams truffles I ate last night (oof, now you know why I have gained 27 pounds!). Maybe I’ll crash by 6pm tonight – who knows! I’ll take a good day, and not spend too much time wondering why, and how to recreate it. Because one thing I’ve learned, whatever my status is at any given moment – feeling good, feeling like crap, bone tired – things are bound to change, and probably soon.
Now I think about it, my eyes are starting to feel a little heavy. Time for cup of tea, or possibly another mocha truffle…
So I can’t stand door-to-door sales types, like most of you. I never know what to say to get them off my porch, without feeling like a bitch for being honest when I say “I am not interested.” Whatever feeble reason I give, it’s never good enough, and I find myself in a battle of excuses and counter-attacks, until I am weary and confirmed as the wimp that I know I am.
Well, today was a little different. I’m sitting at home, worn out from traveling and chemo, trying to relax and enjoy Phillippa Gregory’s “The Lady of the Rivers”, when some poopedy-poop head starts leaning on my doorbell, and then pounding on the door, apparently because I am not moving fast enough. (It’s a long rambler, okay?) I’m not wearing a head covering, cause even though it’s only 76 degrees outside, for a woman in the middle of chemo-induced menopause, it’s a freaking heat wave. I’m ALWAYS too hot. Except when I’m too cold, when I’m also freaking irritable. The cold lasts about 37 seconds, the irritable lasts all day.
Anyway, there I am, all Amazon warrior princess, bald-headed and cranky. I get to the door, and open it to a FIOS representative with his little clipboard and badge. Shit. Not even the UPS guy with a package for me. Packages I cheer up for, and can even manage a smile. But no, it’s a FIOS salesmen. They are here about every three months, no matter if I already have FIOS or not (we don’t). For this I hate them. “Hi!” he says, way too cheerfully. “Yeah?” I say, my tone implying what the hell do you want NOW. “I’m from FIOS,” he chirps, again, way too cheerfully. I pause, taking in his badge, his clipboard, his anxious face. “I don’t want any,” I say, tersely. “Okay!” he says, apparently very happy to be released, and no argument or cajoling to keep the sale. Wow, that was easy.
Either his sales quota is in good shape, and he doesn’t really need ME, or it’s just not worth pursuing if it means he has to deal with ME, the one-breasted, bald-headed crank of Lynnwood. Either way, I’m laughing my butt off, as to me, this is the funniest thing EVER.
Bald is power. I may keep it this way.
So, so last night. Thursday was taxol infusion #6. Nurse calls it “the top of the mountain” and in a way it is, so, yay! Though I must recognize that each infusion only intensifies the effects. Even as we celebrate being halfway through taxol, in reality things could become more difficult the closer we get to the end. The possibilities include more fatigue, more neuropathy, more nail pain. But we gotta keep on truckin’.
So, so tired today…
Taking ibuprofen, but that doesn’t really help with the neuropathy. My feet are numb and tingling all over, not just the bottoms of my feet, but now the tops as well.
Ugh, I’m so tired. My hands and feet sort of ache, which I think it caused by one of the anti nausea drugs.
The first time we did this, I was so relieved and euphoric that I immediately went out and had a beer, and a huge meal. By 8pm, I was miserable. I took it easy this time. No idea where I’ll land or when the IV anti nausea meds will wear off. I’m not too worried, I kind of know what to expect. And I have a battalion of anti nausea medications to attack the roller coaster of nausea ride.
Oh, and I agreed to do a clinical study on fatigue. No extra appointments, it’s all surveys I complete on line.
I’ll write more later. Think I’ll take a nap right now.