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 god fucking damn it, 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 fucking 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.
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. 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. 🙂
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:
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.
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.
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.
Thanks to my mom, I discovered Flonase. I am so allergic to grass I couldn’t even. But now I can.
I don’t have to mow every day. I get 6 or 7 days off between every job!
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.)
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.
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.
