Every time I think I’ve hit Fatigue Level: Ultimate™, my body surprises me. And the fatigue gets worse.
Fatigue is hard to describe and even harder for those who don’t experience it to understand.
I remember when I was a non-runner, pretending to be a runner and training for 5Ks. I’d jog for 20 minutes without walking, bend over with my hands on my knees, and huff and puff for a few seconds and think that was fatigue.
But after a minute or two I’d catch my breath and be pretty much recovered. I could climb in my Corolla and drive myself home from the park. I could make dinner, do some laundry, write a blog post or two, go to bed, and then get up, shower, and work an eight-hour day. Repeat three or four times a week.
Not now, baby.
Right now, fatigue for me is:
Praying I can make it to the bed without fainting after a shower
Being unable to even ask Dan to grab my laptop for me, talking is too much work
Sleeping 12 hours at night and needing a nap midday
Getting winded walking from the living room to the bathroom
Having to sit on my rollator while waiting on the electric kettle
You know, it’s funny (in a non-humorous kind of way). I remember how excited I was to be able to stand the entire time I brushed my teeth in February. I was in the hospital awaiting tests and, ultimately, brain surgery. The doctors had just given me something like 10 mg of dexamethasone, and I felt invincible.
“I feel amazing,” I told the doc who would later slice my head open. “My sinuses are even clear.” I inhaled really deeply. “I didn’t need help with my shower. I DIDN’T HAVE TO LEAN ON THE COUNTER WHILE I BRUSHED MY TEETH THIS MORNING.”
He laughed at me, but not cruelly.
Well, now I’m back to leaning on the bathroom counter while I brush my teeth. I can’t stand upright for even two minutes. I’m frankly a little scared that I’m going to revert to pre-surgery disability and spend the rest of my life there.
But it doesn’t really help to worry about that yet, I know.
***
There are lots of things contributing to my fatigue. First of all, I’m fat. At 238 pounds, I am asking more of my muscles than I ever have in my life. I put on about 60 of those pounds in about 6 months. So I didn’t build up any gradual strength to support my own weight, like I might have if it’d taken me a year or two.
To reduce my weight, I’m weaning off the dexamethasone, but that leaves me extremely tired and achy. My weight is dropping, but oh so slowly. It’s so unfair. I’m trying to lose the pounds without the ability to exercise. How is that going to result in anything but failure?
And then there’s chemotherapy. Fucking chemo.
Last night I got my lab results from this week’s blood work. There’s nothing too scary in the numbers, but I continue to see a decline in all things red blood cell related. Basically, the shit’s making me anemic, on top of my already significant list of woes.
Last week my parents were here to help us clean and organize.
That’s because I came home after completing daily radiation therapy in April, and there were still things I hadn’t found a place for. My home office was the catch-all for anything I couldn’t deal with—meaning the floor was entirely covered with laundry baskets full of clothes, books, gifts, papers, and furniture.
Sure, it was annoying walking by that room and seeing the chaos, but it was also a hazard. I don’t exactly get around well on my feet when there aren’t a billion obstacles in my way.
Anyway, my parents (a.k.a. the best parents in the world) helped us clean, mow, fix my Kitchen Aid mixer, and more—all while my mom is dealing with her own sidelining medical problems.
In October, the plan is to have a garage sale as a way to finish de-cluttering and fund-raise for ourselves. If you’re in the area and want to see what we’ve got for sale, watch my Facebook page for an announcement. If you’re not in the area but want to help, you can contribute to my YouCaring campaign or buy from our Amazon wishlist (items automatically ship to our address when you buy).
***
It’s been so long since I’ve posted here. I feel like I should give a health update. Truth is, there’s not much to tell. I spend a lot of time sleeping. The first week after a chemo treatment, I’m exhausted and tired.
But there’s also the issue of my tapering off of dexamethasone again. I’m down to one half-milligram dose daily. It makes me so lethargic and all of my muscles are achy and sore. Not just major muscle groups like quads and hamstrings and biceps and triceps, but the muscles in my cheeks and hands and toes.
My oncologist says I’m on such a low dose of dex that he doesn’t see how it can be affecting me so dramatically. This is the story of my life, people. Medicines that barely affect most patients will potentially melt me from the inside out. It’s a blessing and a curse. On the one hand, if I take a half dose of Benadryl, I will sleep for a week. On the other hand, medical cannabis works so well on me that I only have to visit the dispensary every six weeks or so.
Anyway, coming off of the steroid is not fun, but I am more confident that I will actually be able to quit taking the dexamethasone entirely in a few more weeks. That will hopefully lead to much needed weight loss and help me scratch steroid-induced diabetes off my list of things to worry about.
Feeling pretty whiny today. Lots of things I’d like to rant about for this round of chemo, but too tired to articulate my complaints. Ten more of these, each six weeks apart… I feel like I’ll be doing this forever.
While checking in to my hometown clinic for standard chemotherapy blood work last Monday (with my month-old Illinois Blue Cross Blue Shield ACA marketplace insurance), I learned that medical services at Carle are not covered by my plan.
That includes visiting my primary care physician—whom I really need to fill in on my progress—and getting the physical and occupational therapy my oncologist prescribed.
My Washington University/Barnes-Jewish Hospital doctors (in freaking Missouri!) are on the plan, and that’s not insignificant—but what the hell? How does that make any sense?
Up
On Saturday, I received this little letter in the mail notifying me that the government agrees that I am, in fact, disabled and qualify for disability benefits. This is a relief, because unlike the LTD benefits I wrote about earlier, I can get SSDI for longer than 12 months.
Down
The official-ness of being on SSDI makes me a little sad too, though. I don’t imagine I really have to explain why.
Unfortunately, disability benefits don’t even come close to covering living expenses for the two of us, let alone make it possible to pay off mounting medical bills. (I was billed more than $14,000 for my ER visits on June 7 and 8. I can’t even.)
But whatever. Blood and turnips, bitches.
Up
However, now that I’m officially qualified for SSDI, it might be easier to find additional financial assistance on the hospital bills. I’ll start making those phone calls as soon as I’ve got the spoons.
Moonfaced and bedheaded, but happy the blood draw went well.
Yesterday was my first post-gleostine lab day.
Gleostine chemotherapy, like all chemotherapy, requires a weekly complete blood count (CBC) with differential. On a pretty basic level, it lets me know how dangerous it is to go out in public without a mask. On a more complicated level, it lets my doctors know if I might need a course of antibiotics or perhaps a break from gleostine. This stuff is hard on the cancer and the body, after all.
Anyway, I don’t typically look forward to things that require my being stuck with a needle. Not because I have a phobia, but just because who does? As a patient who’s been stuck for blood samples and IVs hundreds of times since February, I think my veins sense when the needle is coming and get very unhelpful.
A couple of weeks ago, a one-stick event turned into a four-stick event simply because my veins were tired of cooperating.
So I always say something before the tourniquet goes on to put everyone at ease and manage expectations.
“I’m a hard stick,” I told the phlebotomist. “Start wherever you like, with whichever arm you like, but know that you might have to go to the back of the hand and try several times. And I’m okay with that.”
“Do you get stuck a lot?” she asked.
“Heh. Yeah, a LOT.”
She tried the left arm and couldn’t find a suitable vein. She didn’t even try with the needle. Just unwrapped the tourniquet and moved on.
“I drank twenty ounces of water before I came here.” (I always get asked if I’m drinking enough water. Always. The answer is: I am up peeing three to four times a night. I’m getting all the water I can without drowning.)
But thank the patron saint of blood draws, she found a pretty vein in my right arm before I even finished explaining that I wasn’t a bad patient.
One stick, and the blood filled up the vial in record time.
By 10 p.m., the test results were already in my patient portal, and everything is in range so far.
