I Might Owe Dexamethasone a Very Small Apology

I Might Owe Dexamethasone a Very Small Apology

It appears I was a bit hasty in my judgment of dexamethasone. Still suffering after a round of chemo without it, I can now see that in spite of its horrible side effects it was masking some of chemo’s even more horrible side effects.

I won’t go into the full details of my emetic escapades, more for my sake than yours. But I will just say that Activia is off the menu for a few days while I purge my scent memory.

There was some discussion between Dan and I about what to do next, seeing how I spent maybe three hours not in bed this past week.

“You could try taking the dex only during the week you do chemo,” Dan suggested.

I whined something about not wanting to while admitting it wasn’t an unreasonable suggestion. “It was just so hard to quit. I almost think I’d rather suffer some new evil than go through that again.”

For now I’ve decided to take more Zofran, despite the headaches and hiccups. I’ll use cannabis to make me want food and Zofran to keep it down.

At least until the next thing. Because there is always a next thing.

Dexamethasone Sucks

Dexamethasone Sucks

Remember how I’m coming off the dexamethasone? Here’s an update I posted to Facebook yesterday:

As of 8:36 am, I was 96 hours dexamethasone free. But as morning turned into noon, I started feeling sick to my stomach. (I’ve been down this road before, so I had a small lunch of yogurt and 2 cuties and popped a 1/4 mg of dex to stave off the vomiting. You’re supposed to take dex with food.)

“I don’t want to start horking and land in the ER again like I did in June,” I told Dan.

Four minutes later my entire head was in a vomit bag.

So here’s the question: Did I or didn’t I take dex today? Or maybe it’s Schrödinger’s Dex?

While the vomiting has been quelled by a medical cannabis patch, the nausea is lingering. My appetite is at about 6%, but that’s OK for now. I still have a ton of steroid weight to lose. So far I’ve made do with a bowl of Rice Chex, some lactose-free, high-protein milk, and eight Wheat Thins.

I’m going to try real hard to eat some chicken nuggets tonight. Salt and protein have always been my way out of Pukelandia.

Aside from the gross stuff, I’m having major muscle fatigue and soreness. My quads are screaming at me like I’ve been marathon training without taking any rest days, despite the fact I’ve just been in bed whining since Tuesday.

I’m also having some issues with rebound swelling and double vision. Both things to keep an eye on, because my brain could swell, too, without the dex—and that would be bad. And require me to go back on the dex. And we don’t want that.

Dear god, we do not want that.

The Dexamethasone Saga Continues

The Dexamethasone Saga Continues

I haven’t taken dexamethasone since December 31, 2017. I didn’t plan for it to be a year-end thing, it just worked out that way. And, although I’m proud to be 72 hours steroid free, I am not completely out of the woods.

I’ve been pretty much bed-ridden since Christmas, when I started the final step down before quitting. My muscles hurt in ways that force me to shuffle down the hallway taking the tiniest steps. I ask Dan to fill my water glass for me and turn switches on and off, because I just can’t.

My skin hurts. When I twist my torso to grab the toilet paper orI roll over in bed, my skin feels like it’s being twisted or pinched after first being carpet burned. But all of this is on the under side of my skin, not the surface. (Don’t worry if this doesn’t make sense to you; it doesn’t make sense to me either.)

My coat hanger pain is so intense, it frequently reduces me to tears. The referred pain from the nerve it pinches goes into my left arm, my neck, my jaw, my ear. And the muscles covering my skull on the left side of my head—the ones I used to use to wiggle my ears—are just tiny over-dramatic knots. When my head hits the pillow, they signal to my brain that someone’s digging around in an open wound.

Because I hate to leave things on a completely negative note: I bought the Bedknobs & Broomsticks Blu-Ray with an Amazon gift card the other day. It is supposed to arrive today, and once it gets here I am going to watch it on repeat until I fall asleep.

35 Oddly Specific Ways to Help Someone with Cancer

35 Oddly Specific Ways to Help Someone with Cancer

This list of 35 ways to help someone diagnosed with cancer started out as an exercise in gratitude, a list of very specific things I’ve been grateful for since my brain cancer diagnosis in 2017.

But I realized it could be useful too. I’ve been asked so many times, “How can I help?” 

Sometimes I’ve known I needed help but was physically so exhausted I just couldn’t think of anything specific.

I have a feeling I’m not the only cancer patient who’s had this experience, though. My hope is that you’ll contribute more ideas or examples in the comments and that this list helps patients know what to ask for and helps non-patients know what to offer.

Full disclosure: I’m adding referral links to help keep the lights on here.

Ways to Help Someone with Cancer

1. Buy groceries.

We’ve received gifted grocery orders from friends who live out of state via Instacart, and those deliveries were an absolute godsend. Fresh food, produce, prepared meals, hydration powders, protein shakes — it’s as good to have one less thing to do as it is to have full cupboards. Use my Instacart+ link and we both get $10 and/or my Walmart+ link and we both get $20.

2. Mow the lawn.

This is a no-brainer. Even if technically someone in the household can mow, it doesn’t mean they don’t have their hands full.

3. Bake something.

Store bought baked goods have their place, don’t get me wrong. But homemade banana bread and cookies taste like love. People have worried about whether or not I can keep stuff down, but here’s the thing: Dan needs to eat too.

4. Send gift cards.

When I was traveling to St. Louis for radiation and chemo in 2017, restaurant and gas gift cards meant I could focus on treatment.

5. Watch their YouTube videos.

My YouTube Zentangle channel became eligible for monetization a couple of years ago, so when people watch my videos now I actually make a few cents from the ads. Early subscribers who watched because they cared about me, and not my Zentangles are the reason my channel was able to grow.

6. Read their blog.

My site analytics tell me that a few people are interested in reading the (sometimes) mundane stuff I write on my blog. Even when cancer has me feeling down, it’s a little less lonely out here.

7. Send a package.

Not every gift has to be brand new either. Some of the most helpful things I got were second-hand treasures. During lockdown, getting a surprise in the mail always brightened my day.

8. Design a living space.

So this one might be a little too specific to help everyone, I happen to be related to an architect. He came up with plans for a new space so we could be closer to family and I could live in an accessible home. 

9. Share, start, or donate to a fundraiser.

I’ve had a couple of GoFundMe campaigns since 2017. People, some even strangers, have helped by donating and sharing links. Cancer is expensive to treat, and that’s just scratching the surface. If you know, you know.

10. Share a wishlist.

I know Amazon isn’t the most reputable company on the planet, but setting up a wishlist there has made it easy to give and receive. When people have passed my Amazon wishlist link on through social media, it’s been cleared in a matter of hours sometimes. Sometimes I ask for creature comforts, and sometimes necessities.

11. File taxes.

My Dad did our taxes while I was going through radiation. He helped us in so many ways, but this will stick with me, always.

12. Fill out forms.

Being sick and filling out paperwork for, well, anything is not an enjoyable experience. Sometimes I’ve needed help remembering information because of the chemo fog. Other times my neuropathy made it too difficult to wield a pen. 

13. Become a patron.

Assuming, someone has a Patreon account, this can be a wonderful way to show support. This is how my art supplies and video equipment were funded for my YouTube channel, and it’s how my webserial memoir, Who You Gonna Believe got off the ground.

14. Leave a comment.

Doesn’t matter where it’s been—on a blog, a video, or a social media post—reading and responding to comments gets me out of my own head. Sometimes it’s the only thing that does.

15. Visit.

Exercise caution here. The pandemic has complicated this one, I know. But an (occasional, I’m still an introvert and cancer makes me tired) short visit or an overnight stay has reminded me I’m living, not dying. 

16. Share what you create.

Whether you paint, make TikToks, or build furniture, I always want to see it.

17. Offer a warm blanket.

When I have had MRIs or infusions at the hospital, the nurse or tech always offers a warm blanket. Put a throw in the dryer for someone. NOTE: Temperature dysregulation might make an offer of an ice pack a better choice.

18. Complete a chore.

My SIL once patched and repaired tiles and moldy drywall in our bathroom. Stuff that desperately needs to be done but patients and caregivers don’t have time or energy for are what I’m talking about here. If you can’t do it, but you can line up help? Also worth considering.

19. Support a caregiver.

I spend about 50% of my worrying time stressing about Dan. Supporting him is supporting me. Sometimes I put stuff he’d like on my wishlist.

20. Give them weed.

Void where prohibited by law.

21. Get angry or swear.

When I get bad news or have rough day, sometimes all I really want is validation. Dropping an appropriately placed F-bomb can be a lot more helpful than a cliche “at least you don’t have…”

22. Make them a sign.

My mom made me a sign that just said “tumor” when I was first diagnosed. I flashed it anytime a full explanation was too great a burden to bear.

23. Be forgiving.

Some meds make me irritable, and a lack of sleep or the inability to feed myself can make me cry at the slightest provocation. Grace is always appreciated.

24. Wear a mask.

We can make this about Covid if you insist, but I don’t want the flu or the common cold either. When people outside my circle mask up, I feel safer. Like maybe one trip to a public building won’t leave me bedridden for weeks. Like maybe hedonism doesn’t always win.

25. Get vaccinated.

See 24.

26. Schedule a game night.

It’s good for the soul to have some stress-free fun on a regular basis. I’ve enjoyed in-person board games and online video gaming so much. And because it’s just a game, I never felt guilty about backing out because of cancer symptoms or chemo side effects. 

27. Pet sit.

My initial treatment was concurrent radiation and chemo. Not only was it in St. Louis, 3 hours away from my home, but it was very intense because life with cancer was so new to me. Having someone to watch our dog and cat for 2 months was helpful beyond words.

28. Research a major purchase.

Sometimes (okay a lot of times) buying stuff takes research. When people make recommendations for big purchases like a robot vacuum or a refrigerator, it’s a huge load off.

29. Assume the thank you is implied.

I’ve had so much support from friends, family, co-workers, and even total strangers. I always want to send a thank you to acknowledge that support, but sometimes life’s proverbial fires get in the way. When people don’t take offense if I miss something or just plain forget (because, hello chemo fog), that’s helpful.

30. Enable a hobby.

Send art supplies. The coloring book is a cliché that some patients don’t appreciate as much as others. (I personally collect them, so feel free to send me what you don’t want.) But there are loads of hobbies you can help someone explore. That’s how I fell down the Zentangle rabbit hole.

31. Vote.

This is specifically meant for my U.S. audience, but I’m sure it applies elsewhere too. Whether your views are liberal, conservative, or somewhere in between, it doesn’t matter so much. Nothing is more harmful to a patient than apathy. People are bankrupted by a cancer diagnosis when not enough people care care about laws, systems, and policy.

32. Drop them off at the door.

“Take the stairs” and “park farther away from the door” don’t apply to me anymore. Some days and weather conditions require being dropped off. When someone does this for me, I feel seen. On days when I’m up for a few extra steps, I’ll say so.

33. Shop for them.

My mom thinks shopping is enjoyable and returning items is no big deal. When I gained 60 pounds on dexamethasone, she did all the shopping work for me. All I had to do was try stuff on at home and say “keep” or “pass.” It was glorious. 

34. Send them cat photos and funny memes.

Does this need explanation? When you don’t know what to say to cheer up someone with cancer, try this.

35. Advocate.

You could go to an appointment with a patient or run a 5k with the patient’s name on your shirt. It all matters. Whether you know someone who lacks the resources to deal with The System or not, you help today’s patients and everyone who follows.

BONUS! 36. Meet them where they are.

I could write an entire post on brain cancer disability, but too keep this brief let me just say: every person with cancer is disabled. Disability can fluctuate from day to day. It might be permanent, like in my case, or it might be temporary. It might be cognitive or physical or emotional. Learning to recognize it is vital. Always.

What are some other ways to help someone with cancer?

Evusheld Covid-19 Preventative and More Cancer Stuff

Evusheld Covid-19 Preventative and More Cancer Stuff

I’ve got a lot of cancer things to talk about in today’s episode, including getting the Evusheld Covid-19 preventative, scheduling #AllTheVaccines, scheduling my next MRI, and a pleasant prednisone surprise.

If you’re following along at home, you might remember that I rescheduled last week’s oncology appointment to yesterday afternoon. I thought it was going to be boring and routine, like a meeting that should have been an email. But, clearly, my doctor and I discussed a lot of stuff.

First up: Evusheld. It’s another preventative for Covid-19 that’s available for the immunocompromised. My doc said I qualified for it and recommended it. So I got Evusheld this morning at the cancer center.

My appointment was scheduled for 7:00, but I didn’t get to leave until about 9:00. The stuff has to thaw, and then you have to hang around for an hour for observation in case you have an allergic/adverse reaction.

There are reasons I set early appointments. Empty waiting rooms are one.

I picked out a shirt specifically for getting the two shots in my arms only to be told they were administered in the ass and be asked if it was OK if a new nurse watched.

The more the merrier. When you have cancer, I think you inevitably learn to leave your inhibitions at home. Next to the box of vomit bags probably. I don’t know.

So I came home with two Tweety Bird Band-Aids—one on each cheek. Cute.

As for side effects. I’m really tired now, but I don’t know if it’s the Evusheld, two days in a row getting dressed and leaving the house, or being up this morning at the butt crack of dawn. Maybe all of the above?

Next, my doctor and I discussed vaccines. I need my second Covid booster and my second shingles and pneumonia vaccines. (Apparently I *just* missed getting the new single-dose pneumonia vaccine. Curses!)

It’s a lot of shots, and getting them requires finely orchestrated scheduling. There are requirements for spreading them out, but also? Insurance. God, I hate insurance. 

The shingles vax isn’t covered because I’m too young, and the first one cost me $200 out of pocket because I’m not 50 yet. I expect the next to be at least that much. Literal and figurative gouging. If gas prices concern you, congratulations I guess.

It’s worth $400, though, because I had shingles a few months ago (thanks, cancer!) and I hope I never have them ever, ever again. 

I’d rather have another brain surgery. No lie.

Anyway, that left the perfunctory chemo questions and the MRI questionnaire that takes FOREVER. There was a new nurse observing that too, and when I responded no to whether I was claustrophobic, she looked at me, shocked, and said, “YOU’RE NOT?!”

This’ll be number 22 or 23. I’m over it, folks. Besides the new hospital machines are like Cadillacs compared to the tiny, dark mobile unit I was shoved into for MRI #1. I had to sing Jesus Loves the Little Children to myself to get through that first one without crying.

Brain MRI pro-tip: always ask for the washcloth over your eyes.

That MRI is scheduled for the last part of July. There will be some scanxiety but it has nothing to do with the process and everything to do with wondering about the results.

Lastly, surprise! I officially didn’t gain any weight* while on prednisone. My last three appointments only varied by like a pound. I’m still fat but not fatter, and my dexamethasone clothes from 2017 still fit like a giant garbage bag. (Thanks, chemo?)

That’s all for now. I need a nap.

*I don’t care how much I weigh. I just can’t afford new clothes right now. Did I mention Shingrix is like $200 a pop? 

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