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.
Anemia and fatigue go together like macaroni and cheese.
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.
“I know what I want for dinner tonight,” I told Dan. “I want the pulled pork nachos from Hickory River.”
I’m gearing up to take the first dose of my new chemo pill tonight, and preparing for the worst by indulging in a favorite meal. There’s no telling how long it might be before I like food again.
And it might all be totally fine. I could tolerate this chemo very well, and I hope I do. But that doesn’t mean I’m willing to risk it by eating sad food for dinner tonight.
Related: my online activity might be negligible the next 48 hours or so. Or it might be fine. I’m just saying—if it seems like I’ve disappeared, I have. But it’s nothing unexpected. (In such a case, feel free to harass Dan on Facebook or by text if you have questions.)
***
My new chemotherapy med is gleostine.
Like Temodar, gleostine (it has so many names: CCNU, CeeNU, lomustine) is also used for treating primary and metastatic brain tumors. (My tumor is primary, by the way, meaning it started in my brain and didn’t spread there from some other cancer.)
It comes in capsules, with really trippy instructions like “don’t touch this shit without wearing gloves” and “P.S. we should really disclose something about mustard gas derivatives.”
Oh, and one 200-mg dose costs $1100 without insurance. With my particular form of Obamacare*, one dose costs me $110. However, because I pay $350 every month in insurance premiums and don’t have a job and my Social Security Disability case is in limbo, it still feels like it costs an arm and a leg.
I’d rather it cost a brain tumor.
***
My orders are to take the gleostine at bedtime on an empty stomach, save for a preceding Zofran and water cocktail—designed to minimize my chances of puking up the very expensive pill.
I’m not supposed to eat anything for a couple of hours after taking it either, but with any luck I’ll be asleep. If I’m not asleep, I’ll probably be puking and not eating. You see how I can’t fail here, right?
***
Side effects. To be an informed patient, you have to read the literature. Which means you have to lie to yourself and pretend you aren’t petrified that all of these horrible things could be part of your future.
True story: There’s a medium-security federal prison on I-70 in Greenville, Illinois. You can see it from Interstate 70. You can also see a sign situated in front of it that reads “If you lived in Greenville, you’d be home by now.”
“Oh my God, Dan. Did you see that?” I asked through my laughter. “Who puts a ‘you’d be home by now’ sign in front of a federal prison?”
“Why, the great citizens of Greenville, Illinois, I do reckon.”
“It makes me wonder if someone has the best sense of humor ever or if someone is uncommonly oblivious.” And then I paused reflectively for a second. “Doesn’t matter I guess. I can’t decide which would be funnier.”
We were on our way to St. Louis to see my doctor about my brain tumor, a Grade 2 astrocytoma nestled all up in my brain stem.
***
I had a full day of doctor things at Barnes-Jewish Hospital. It started off with an MRI. Then I had labs done to check my counts and make sure I was in good shape to start back up on chemotherapy, and then I had a visit with my neuro-oncologist.
The nurse who installed my IV for the MRI contrast immediately made my day. “Are you going to have other labs at the 7th floor location? If so, I can leave this IV in, and the nurses there can use it to draw blood. One stick today.”
“YASSSSSS!” I cheered. I’m a hard stick now that I’m a cancer patient. Like, my-veins-are-sentient-and-burrow-into-my-bone-marrow-at-the-scent-of-an-alcohol-swab kind of hard stick.
When it was time for the draw, the IV wouldn’t give up the goods though. In all, they stuck me five times yesterday. And that just sort of scratches the surface of the list of Things That Were Hard About Yesterday™.
My MRI appointment didn’t show up in my patient portal thingy, so I went to the wrong location. We had to walk to another zip code to get to the right place. And the sign-in process there was senseless. Requiring bouncing around on three different floors. I don’t know if y’all remember this, but walking is hard for me.
I managed to get it done without a wheelchair because I’m stubborn and had my rollator. (My legs cramped up all night long. Today I can hardly stand up and there’s a spot on my to-do list in all caps “APPLY MAGNESIUM LOTION AND SIT IN YOUR DAMN RECLINER ALL DAY.”)
The MRI itself was the best one yet. “Imagine” played on the headphones while the magnets jiggled the table and lulled me into a relaxing sleep. When I wasn’t dozing in the Skinny Tube of Loud and Screechy Noises, I was able to keep my eyes open. I am officially over all MRI fears.
Die in a tire fire, claustrophobia.
***
Despite an extremely draining six outpatient hours at the hospital, I feel good about the outcome. The MRI told the doctors that my brain tumor is still stable—a comfort considering any active treatments were postponed while we waited to figure out what was happening with the Temodar.
According to the nurse, my blood counts were “beautiful” following my treatment hiatus, meaning I’m in a good spot to resume treatment.
I don’t have to go back on the Temodar!
My doctor has prescribed a new chemotherapy pill, and this is one of those rare cases where “the evil that you know is better than the evil that you don’t know” just does not apply.
When my doctor said, “We’re very concerned about what happened to you on the Temodar,” I was so relieved.
My doctors are still listening to me and they are concerned about my quality of life. They care about me as a whole human person. I’m not just a tumor incubator with the potential to land them on the cover of Brain Tumor Slayers Monthly.
***
So here’s the plan:
My new chemotherapy is still a pill that I can take at home. No infusions.
The name of the medicine is gleostine (also called lomustine, Ceenu).
I take it for one day and have six weeks off, as opposed to the five-day regimen for Temodar.
Fatigue seems to be a certainty as far as side effects go.
One dose of chemotherapy costs $110. (That’s in addition to my monthly premium of $350 for health insurance, so here’s where I plug my YouCaring fundraiser page again.)
I will resume weekly labs to make sure my blood counts are good, or at least passable, but I can do them here in Urbana.
My doctor gave me a new script for PT/OT. I have to check with insurance to see if I can even afford it. But I’m hoping it will be possible and that it will help me get over some pain and numbness that’s overtaking the left side of my body lately.
My dexamethasone dosage is being reduced from 2 mg daily to 1 mg daily. (Fingers crossed, I can stay active but a little less hungry on this dosage. I gained another 10 pounds since my last doc visit.)
We got back last night from an overnight jaunt to St. Louis, where I met with an allergist to try and determine whether or not I have an allergy to Temodar, the chemo pill prescribed by my oncologist. To sum up how I got here, in case this is news or you’re fuzzy on the details:
In March and April, I took Temodar simultaneously while completing radiation at a dose of 140 mg. Those 5+ weeks were pretty okay. I had some side effects, but nothing anywhere near as bad I had been bracing myself for.
The day after that round of treatment ended, I broke out in what I thought was THE WORST RASH IN HUMAN HISTORY. A dermatologist was seen. Creams and antihistamines were prescribed. I was miserable for a few days, but it got better.
Radiation was officially over at this point, and chemotherapy and I were on a break for a couple of weeks. The plan was for me to start up the once-a-month-for-five-days-in-a-row chemo regimen on May 15. The dosage would be much higher: 320 mg first thing in the morning after I’d take my precautionary Zofran.
I took that first 320-mg dose, and four hours later the apocalypse started. My doctor put my treatment on hold and recommended I see an allergist.
To my great relief, the allergist did not order me to swallow a Temodar pill and watch to see what happened. She only ordered a scratch test with serum made at a couple of different concentrations.
“If we get a positive reaction, that will certainly tell us something,” she said. “However, if we get a negative. Well, that doesn’t really tell us anything. There isn’t a whole lot of literature on this.”
There was no reaction, but based on the symptoms I’d reported and some lab work I’d had done to investigate whether DRESS syndrome was a potential culprit, she devised a basic plan of attack.
Her first choice for me would be to make a switch to a new chemo drug, if a suitable alternative is available. If not, she’d like to try desensitizing me to the Temodar so that I can continue with treatment and not lose progress on shrinking the fucker. (She did not call my tumor a fucker.)
Desensitizing would involve me taking micro doses over a longer period of time. They’d keep me under observation and monitor me for eosinophilia until they figure out what I can handle.
So my allergist and my oncologist are going to have a chat about next steps. In the meantime, I’m just holding tight and enjoying some relatively decent days without chemo.
We’re having unseasonably fantastic weather here in Urbana, and that means that I’ve been spending anywhere from 60 to 90 minutes outside for the past few days.
I mostly just stare in wonderment at Dan’s garden from under the shade of our maple tree, but I’m moving around a little bit too. Grabbing my trusty rollator and walking around the back yard.
Today I was so pumped, I walked to the front of the house. In my pajamas. Part of me wants to wear a sign for my neighbors: PAJAMAS ARE FOR CLOSERS.
***
“I don’t know why I love staring at these plants so much,” I said to Dan. “It’s not like I’m going to see them grow in the time I’m out here. Just something about it makes me happy.”
“I think it’s because there’s something inherently optimistic about a garden.”
So true. Also? I get to imagine all the things I’m going to eat. Nothing tastes bad on dexamethasone. Nothing.
I mean, I’m not going to start eating mushrooms anytime soon, but I have a suspicion I could tolerate them now.
***
My ACA health insurance kicks in on July 1, so I got on the phone yesterday to schedule that appointment with the allergist I had to cancel when I lost my job and insurance at the end of May.
The test is to determine whether or not I have an official allergy to Temodar, my chemotherapy pill. I am mostly hoping that the answer to that question is yes, because I want absolutely NOTHING to do with that pill ever again. And I want my oncologist to say nicely to me that he will never ask me to swallow certain death in pill form ever again.
But it’s not clear to me yet what other chemotherapy options I will have if the Temodar is a no-go. Fighting brain cancer requires treatments that can cross the blood-brain barrier, and that’s kind of complicated. And, yeah, I want to fight this shit, so…
***
If you’d like to donate to help us with medical and living expenses as I continue treatment, please visit my YouCaring campaign.
I missed a call from my hospital social worker on Friday. She’s been working with the makers of my chemotherapy pill (Merck) to see if I qualify for prescription payment assistance.
(I already paid the co-pay amount for the first round of pills out of pocket, because I wanted to start treatment as soon as possible and be done with it as soon as possible. Brain tumors, no matter how slow-growing, don’t seem to me like something you just let sit around for weeks unchecked.)
But you know what’s even more shitty? Chemotherapy co-pays on my insurance plan are not like co-pays for typical drugs. They’re more expensive.
“Oh? You want to live? Well, dear, that costs extra.
“Didn’t you see the asterisk on your plan? No, not that one. That one either. No, the other one.”
I’m taking a generic for Temodar, if any of you tumor-havers want to compare notes.
Anyway, I have no idea what the final decision is until I can speak with my social worker, but I’m guessing they’re not going to give me any assistance because I was making too much money at the time I applied for help. (Which basically just means employed.)
So, tomorrow morning, I’ll call for confirmation of the drug assistance decisions, tell my social worker my short-term disability benefit has run out, and start a new conversation about applying for Social Security Disability.
Hot damn, I can’t wait to be judged by healthy assholes on the internet for the high crime of trying to keep my house while I fight a brain tumor that I must have done something to deserve, if, in fact, I didn’t actually give it to myself.
Just thinking about this stuff fills me with angst and dread.
If you’d like to contribute to my YouCaring campaign, or share it with people in your social networks, here’s the link: Help Emily Pay Medical Expenses for a Brain Tumor
