It’s Not the Cancer, It’s the Chemo

It’s Not the Cancer, It’s the Chemo

I’m having a day. I was on the fence about writing about it, because the part of me that is severely chemo depressed right now is like, why expend the energy trying to be understood? This is unexplainable. You will waste time and precious energy and still no one will understand.

Maybe I just need the thoughts out of my head and into The Void.

It’s Friday, so it’s sheet washing day. I got the fitted sheet on the bed. Then I rested and put the top sheet on the bed. I’ve still got pillow cases and the quilt to go.

But I had to stop and take a break and stare at the spinning walls for 30 minutes while wallowing in self-pity about how difficult everything is. Yes, Dan will help me if I ask.

But holy shit, I am tired of having to ask for help with ev-uh-ree-thing. And sometimes I have to prove to myself that,  yes, I do actually need the help. Been a gaslighting recipient one too many times I guess.

While my pulse was racing, it occurred to me that this is maybe something I can use when talking to my doctors and nurses.

“Does your pulse usually run high?” (Every visit starts with vitals.)

Yes! Fucking yes! Every time I’m in here you ask me that. It’s always like this!

But it occurs to me that I should be spelling it out for them. “I walked ten feet with a mobility aid, and my pulse is as high as if Healthy Me had completed 30 minutes of jogging. Now do you fucking get it? This is what fatigue level 7 looks like. Stop pretending those god damn numbers from 1-10 mean anything to you!”

But I am not actually mad at the medical staff. They are caring. I am just mad at life. At how unfair literally everything is.

I’m tired. I’m exhausted. I’m fatigued. But no one has any idea what those words mean. Because they’ll say them right before they binge watch a TV series while SITTING UP and maybe even walking to the kitchen for a snack.

I know this is just how I feel some days. I don’t need a pep talk. Thanks anyway.

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Chemotherapy Update

Chemotherapy Update

After much drama involving an initial denial of my chemotherapy pills, temozolomide, the ball is finally moving again on my next round of cancer treatment. So I thought I’d do a little chemotherapy update.

If you watched me melting down in real-time on Twitter, I’m sorry you had to see that. But even more sorry I had to endure it. There is nothing particularly pretty about cancer or the state of healthcare in the United States.

I’m super groggy after taking a new dose of amitriptyline last night to help me sleep better and lessen my anxiety, so I’ll just briefly summarize where I’m at:

  • The hospital’s specialty pharmacy will mail 28 doses of chemo to me this week
  • Monday I will have a telemed appointment to go over my treatment
  • Palliative care is helping me adjust my meds to handle the additional stress and anxiety I’m dealing with
  • I will be doing treatment here in Urbana through Carle this time instead of in St. Louis like I did in 2017
  • My mom was planning on coming Sunday before I even knew about the chemo, so I think we’ll get the house in order (well, closer to it) before Dan and I are completely exhausted by everything
  • Dan still doesn’t have an approval for coverage of his meds (which we really need him to have before he starts helping me through this). Once again we are at the mercy of an insurance company that simply doesn’t give a shit.
  • I’m worrying at normal intervals about getting treatment as we ride into another wave of this pandemic. (Dan and I were both vaccinated back in March; I’m more concerned about the availability of hospital beds. Last time I did chemo, I had to go to the ER and also get IV fluids.)

I’m eager to get this round of chemo behind me and reluctant to take the first dose all at the same time. I’ll update again when I have more news to share. If you have questions in the meantime, feel free to ask. Replying to comments might give me a place to channel my nervous energy. 🙂

Tweet text: Just a reminder that when ICUs are overwhelmed with Covid cases, it doesn’t just mean they don’t have capacity to admit any more patients with Covid. Heart attacks, strokes, car accidents, you name it, it means there’s no capacity for those patients, either.

Love you all. Get your vaccine.

Exercising Artsy Parts: Jesse Lane Art Workshop

Exercising Artsy Parts: Jesse Lane Art Workshop

Dan keeps calling me an artist, and I keep saying all I did was follow directions. Though I guess I did exercise my artsy parts.

But guess what?! I completed Jesse Lane’s Riptide online art class this weekend. I’ve posted some process photos on Twitter and Instagram if you haven’t seen them yet but want to. I’m particularly proud of myself for sticking with the real-time instruction, because class went from 9 am to 4 pm on Saturday and Sunday. Thankfully there were lots of breaks, including an hour-long one around lunchtime each day that helped me get through. In total I spent a lot more time participating in this class than the Zentangle one in March but it was easier on me because of the built-in downtime.

Jesse walked us through his process for drawing small sections of one of his pieces. Just these two little areas took up the entirety of both days. But I sit back and think to myself, “Whoa, I did that!” It’s a good feeling. Of course I’m also thinking about all the little things I wish I’d done instead. Some of it is nitpicky self-criticism, and some of it is just acknowledging where I can improve down the road.

This class was the big thing I was hoping to get done before starting chemo again, and now that I have, I feel a little bit better about the idea of doing Temodar again. Although—don’t get me wrong—I will never enthusiastically swallow those pills. Also, my doctors still haven’t called me about when, exactly, they want me to start. I know I should probably give someone a call and ask what gives, but words can’t express how not eager I am to do that at the moment.

If you’ve never done chemo before, it might help to think about how reluctant you’d be to schedule your own root canal…and then multiply that feeling by cancer to the infinity power.

But enough about that. I want to thank everyone who’s doing kind things for me at the moment. It makes a whole lot of heartache feel manageable. From Linda, who let me have her spot in this art class, to Liz, who sent me that set of Golden Girls Pop!s, I’m grateful for everyone who’s taken a second to help cheer me up.

That also applies to everyone supporting my fundraising on GoFundMe. I’m inching closer to reaching 2% of my goal (and my goal is huge, so even 2% feels like a lot). My tweet about the campaign has been shared 86 times! However horrible I feel dealing with this cancer crap, I feel a little less like I’m doing it all alone every time someone reaches out to say they’re rooting for me.

Others have asked about alternatives to GoFundMe because the site takes a small portion of donations in fees. That doesn’t feel excessive to me, because of the platform it provides but I do also have Paypal, Venmo, and CashApp. Here’s a list of all the ways you can financially contribute if you are so inclined:

GoFundMe: https://gofund.me/9e56ec1a
PayPal: http://paypal.me/EmilySuess
Venmo: @EmilySuess
CashApp: $EmilySuess

One Full Year of Logging Meals on MyFitnessPal

One Full Year of Logging Meals on MyFitnessPal

Three hundred and sixty-five days. That’s every single day for an entire year. I logged my meals, my snacks, my fluids, my exercise, my weed, and I even logged my Tylenol and Tums and Flonase.

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My obsession with logging food and medicine was about 35% my wanting to see what foods and drugs made me feel miserable and about 65% me being sick and tired of medical professionals insisting my eating habits were causing problems.

“You need to eat more…”

“NO! Look at my food logs!”

Anyway, it’s an accomplishment to keep up something like this every day for a year when that year includes several months of hating food due to chemotherapy. I’m proud of myself.

I Mowed This

I Mowed This

Please ignore the debris lurking in the shadows back by the fence. Tornadoes ripped through our area a couple of days ago, and we lost a few limbs. What I would like you to notice are the fresh lines in the grass that I PUT THERE.

That I’ve been able to help Dan mow the lawn (walk behind a self-propelled machine) this year is monumental. There are a few things that have made this possible.

  1. Thanks to my mom, I discovered Flonase. I am so allergic to grass I couldn’t even. But now I can.
  2. I don’t have to mow every day. I get 6 or 7 days off between every job!
  3. After I bought a manual push mower in 2015, Dan commended me for my commitment to getting in shape and trying to protect the environment, then he promptly bought a self-propelled gas mower. (I didn’t know I had a brain tumor when I made the overly ambitious purchase, but he knew that neither of us were in any condition to work that hard in extreme heat.)
  4. I’ve lost 39 pounds. I’m still burdened by as many extra pounds, but getting rid of those has made it easier for my body to continue recovering from months of chemotherapy. I’m getting stronger instead of weaker for the first time in years. Literally years.
  5.  I love my yard. Sitting in an outdoor rocking chair at the end of the day and admiring the work that Dan and I have put into it is life-affirming for me. I’m not withering away. I’m doing things. And hopefully every day I will be able to do a little bit more.
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End of Treatment Recap

It’s been one week since the doctor told me I was done with chemotherapy. Here’s a recap of how I got this far. I’ll write more about what happens next and how I feel about everything in a future post.

February 2017:

  • Complete first ever MRI of brain and cervical spine.
  • Learn I have a brain tumor.
  • Rush to Barnes-Jewish Hospital in St. Louis that evening.
  • Have numerous tests and brain surgery to biopsy the tumor.
  • Spend something like 9 days in the hospital total.
  • Begin simultaneous radiation therapy and chemotherapy (Temodar) as an outpatient.

April 2017:

  • Finish 5 1/2 weeks of radiation and chemo with relatively few side effects.
  • Go back home to Urbana for a couple of weeks of rest before it’s time for 6 to 12 more monthly rounds of higher-dose chemo.

May 2017:

  • Take the first higher dose of Temodar.
  • Have severe reaction four hours later that dims my sight, muffles my hearing, turns my lips and fingers blue, makes me too weak to stand on my own, causes fever and chills and an unbearable rash, and makes me puke.
  • Lose my health insurance.

June 2017:

  • Try to go off the steroid dexamethasone, end up in ER.
  • Buy Obamacare.
  • See dermatologist about rash.
  • Have skin biopsied. (All clear.)

July 2017:

  • Declared allergic to my first-choice chemotherapy (Temodar).

August 2017:

  • Begin alternate chemotherapy (Gleostine) to be taken ever 6 to 8 weeks.

October 2017:

  • Learn that my tumor shrank. (Par-tay!)

November 2017:

  • Get too poor to buy Obamacare.
  • Sign up for Medicaid and SSDI.

January 2018:

  • Quit dexamethasone.
  • Begin inexplicable bout with permanent dehydration.
  • Lose weight.

February 2018:

  • Have another ER visit to replace fluids.
  • Spend four weeks bedridden.
  • Beg doctor for routine IV hydration.

March 2018:

  • Begin routine IV fluids.
  • Start feeling human again.
  • Watch platelets plummet and wait impatiently to be cleared for round 6 of chemo.
  • Take round 6. Finally.

April 2018:

  • Be decalred done with chemo after 6 rounds.
The Joy of Itching

The Joy of Itching

I couldn’t sleep last night, because my legs were itchy and tingly. They jump and jerk involuntarily when the neuropathy gets bad. And I toss and turn trying desperately to get them to chill out. What I feel is a lot like restless leg syndrome (RLS), except the severity of the sensations depend on where I am in the chemotherapy cycle. I’m smack dab in the middle of the worst part, having taken Round 6 on Tuesday night.

Sometimes I put large ice packs on my legs and that helps. But I was too cold for that last night. So at 2:00 in the morning, I got out of bed and jumped on my FitDesk exercise bike. I rode for 20 minutes—which is a long-ass time for me in the middle of treatments—until the uncontrollable urge to move around and scratch my legs subsided.

By some miracle I was able to fall asleep before the itching and prickling returned. But here I am this Easter morning wondering what would happen to me if I just biked all day. As a chronic pain aficionado, I’m here to tell you that chronic itching is infinitely worse than…well, anything. Chronic pain might depress you, but chronic itching will make you lose your bloody mind.

Anyway, that’s just the legs. They’re the worst, by far, but I itch everywhere. I scratch my face. My head. My neck. My arms. When I reach peak itching, it feels like there are bugs crawling on my forehead and hairs tickling my face. It’s a real joy, let me tell ya.

So Stinking Close

Got my CBC results yesterday, and my platelets were 93. Close, but not quite the 100 we were looking for, and my doctor is a bit of a stickler for these things. That means Chemotherapy Round 6 is delayed by yet another week, pushing me about three weeks past the ideal six-week dosing.

I currently have mixed feelings about the delay. I mean, I really want to get done with all the chemo crap. This roller coaster of feeling like a steaming turd and then being throat punched by another dose of gleostine just as I’m starting to feel human again is making me cranky.

But! Going this long between doses has also given my wrecked body a little bit of a break. My appetite is better, my energy is up slightly, my neuropathy is less intense, and my dehydration is manageable with enough sports drinks and electrolyte pops. As a result, I’ve had just enough energy to accomplish a few necessary items on my to-do list—including renewing my driver’s license and getting an eye exam.

Not that I drive right now.

I’m lucky in that I don’t have seizures and my doctor has not revoked my driving privileges, but I’m not comfortable driving. I get vertigo looking left or right, and I still don’t have full range of motion when turning my head. I find the thought of getting behind the wheel really unsettling. But I thought it would be easier to keep my license current than let it lapse.

And now it’s back to trying to get a standing order for IV fluids. (I love my team at Washington University, but they’re kind of far away. Things get complicated when it’s time to coordinate the little stuff that needs to happen close to home.)

Happy Wednesday.

Is it Monday Yet?

I went to bed last night feeling decent; I woke up this morning feeling completely dehydrated. Then I dry heaved into a vomit bag until I could finally get a Pedialyte Pop down.

This is becoming my pattern:

  1. Drink fluids all damn day, including 20 oz. of Gatorade, and a eat a Pedialyte Pop right before bed.
  2. Dehydrate while I’m sleeping.
  3. Wake up dizzy and thirsty.
  4. Dry heave.
  5. Eat another Pedialyte Pop.

The big mystery is why do I keep drying out over night? I have a humidifier, and humidity in the room is reading 60%. I have water and something with electrolytes before bed every night. I drink between 80 and 100 ounces of fluids in a typical day. And it’s been 7—almost 8—weeks since my last chemo round. (I’d anticipate problems in the first week after taking the Gleostine.)

I’m trying to get through the weekend without a trip to the ER, because after next week I’ll be fixed up with a standing order. And I can get IV fluids whenever I need them without taking up a bed in the ER or accruing thousands more in medical bills.

If I can just make it a couple more days.

Chemo Round 5 Is Complete

Chemo Round 5 Is Complete

I lost another 1.4 lbs this chemo week. For a total of 14.4 since quitting dex (about a month ago).

I’ve for sure got the pounds to lose right now, but I’m concerned about sustaining this through the rest of my treatments, because I’m not in control of this loss. It’s just one more thing that’s happening to me.

This round of chemo was the worst to date, and I’m confident it’s because I didn’t have the steroid to mitigate the side effects.

One side effect of the chemo that I haven’t mentioned before (because I was only sort-of aware of it) is a crushing depression and anxiety.

Anxiety asks: What if this god-awful hell isn’t temporary like you think it is. What if you can’t get the chemo out?

And Depression answers: Of course it’s permanent now. Since when did you become such an optimist, Anxiety?

And then I’ll read about someone in my brain tumor group having their tumor 97% cut out and I’ll cry to Dan. “They can’t cut mine out. I have to keep it.”

It’s rough. Some days this thing reduces me to a five year old that doesn’t understand why she doesn’t get presents at her friend’s birthday party too.

Other days I’m like, “Want to see where they cut my head open?”

Anyway that depression goes on for the last 24 to 48 hours of chemo week, and then I wake up on the 8th morning with the cloud gone, and I’m chatty and happy and smiling. I feel sort of silly for being so emotional.

But that’s cancer. And that’s chemo.

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