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.

7 Signs of a Bad Doctor

7 Signs of a Bad Doctor

I’m sharing personal anecdotes along with these 7 signs of a bad doctor for a few reasons:

First, I want you to know that if you’ve got a crummy doc, you’re not alone. So many people can relate. (The hashtag #DoctorsAreDickheads existed on Twitter for a reason!)

Second, it might help you see warning signs in your own care. Maybe you just don’t like your doctor; maybe your doctor is genuinely terrible.

Remember: doctors, like anyone else, are not good just because they chose a profession of prestige and authority. They still have to be competent at what they do—just like the rest of us.

So what are the signs of a bad doctor?

7 Signs of a Bad Doctor

1. Your Doctor Doesn’t Listen

The worst doctor I ever had—The Rheumatologist from Hell™—would barely make eye contact with me. He was always scribbling something in my chart, unengaged and uttering only the perfunctory mm-hmm. At a time when I felt afraid and unsure, this was definitely not helpful.

I let his board know it, too. (Please report bad doctors whose actions cause you actual harm.)

Was he a terrible diagnostician or just bad at relating to me? Either way, I paid a significant price as a chronic pain patient, and I wonder now how many others did too. It’s a big deal and harmful—sometimes life-threatening—to be ignored. Ask me how I know.

2. Your Doctor Blames You

There were only so many times I could be told that diet and exercise were my problem before I realized the doctor was making my problem worse by taking the easy out.

As it turns out, all these years later, I’ve still never read a single article confirming that I wouldn’t have brain cancer if I’d just managed to lose 15 pounds. It’s bullshit, but it was fed to me repeatedly.

Sometimes the doctor’s admonition is what it is—fear of fat. Sometimes the extra weight is a result of disability and immobility. Sometimes food is the only scrap of comfort available precisely because no one will listen.

Me, bloated and fat from the dexamethasone, on the last day of radiation for my brain tumor. I am surrounded by my family.

The why doesn’t change this truth:

A failure to see any other possibility or acknowledge an inability to diagnose your condition in spite of an “unideal” weight is a red flag. No one knows everything, and any doctor who can’t accept their imperfection is doing patients a huge disservice.

3. Your Doctor Makes You Feel Rushed

The worst doctors I’ve had made me feel like they had somewhere else—maybe even somewhere better—to be. 

It hasn’t happened to me a lot, mostly because I’ve been waiting so long in uncomfortable chairs that I’m the one who wants out of there, fast. But when it happens, it’s not subtle. It distracts me from outlining my numerous symptoms, which I have a hard time recounting due to health-related anxieties.

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4. Your Doctor Doesn’t Ask Follow-up Questions

While I’m relaying my symptoms, I expect my doctor to ask clarifying questions. If I could diagnose myself and knew exactly what was important to share, I would probably just ask for the right tests from the start and save myself a lot of money and a lot of heartache, right?

If I say something like “this hurts” and my doctor wants to know the whens and hows of the pain, I feel much more confident that vital information is being considered. And who doesn’t want a shorter trip to diagnosis because all the facts are being considered, not just the easy ones?

Me and my husband, Dan, celebrating his birthday in Milwaukee, Wisconsin.

5.  Your Doctor Takes It Personally When Medications and Treatments Fail

I write a lot about The Rheumatologist from Hell™, but it’s because he so effortlessly did so much emotional damage that I have to work to undo all these years later. Present me wants to scream, “This isn’t about you! Don’t bill me for this crap!”

When Cymbalta (duloxetine) didn’t make me feel better, my old rheumatologist didn’t pivot or refer me to someone he thought might be able to help, he doubled down. He told me I’d hurt more if I didn’t take what he prescribed, and essentially blamed me for non-compliance before I was non-compliant.

6. Your Doctor is Cold

Sometimes doctors are emotionally cold and you leave feeling less than human. These are bad doctors, no question about it. 

There is a certain level of detachment that’s completely appropriate, but if you walk away feeling less than or othered, it’s not you. More than anything I want you to know it’s not you.

7. Your Doctor has Bad Patient Reviews

A bad review isn’t necessarily a reason not to see a doctor. We all know a lot of complicated factors determine which offices we end up visiting.

Doctors and patients can have bad days, and patients might be more likely to leave complaints on review sites when that happens. We have the capacity to see reason as patients.

But if you find a lot of reviews addressing the same problems repeatedly, that’s a sign you’ve got a bad doctor. When I feel like I don’t have a choice but to see a physician with a lot of negative feedback, at least I know what I’m walking into. There’s some solace in that.

Reporting a bad doctor for me is a moral imperative. But it’s equally important to share my good experiences too. It takes me only a few minutes to let other patients know what they can expect.

Pro Tip: for reviews, search for your provider on websites like Healthgrades and Vitals.

Share You Experiences with Bad Doctors in the Comments

Those are my own personal 7 signs of a bad doctor. I’ve probably missed some helpful stuff though. Let us all know what warnings you would add to the list by leaving a comment.

PS: if you’re stuck with a bad doctor and trying to make the best of a bad situation, maybe this article will help: How to Get Your Doctor to Listen

PPS: If you need help relaxing because your doctor is lousy, try making weed butter or learning how to Zentangle! (Wink, wink.)

How to Help a Cancer Patient

How to Help a Cancer Patient

This list of 35 ways to help a cancer patient 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 of ideas helps patients know what to ask for and helps non-patients know what to offer.

Full disclosure: I’m adding referral links to help pay ongoing medical bills.

Ways to Help a Cancer Patient

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.

See the updated and improved list: Ultimate Guide to Helping a Loved One with Brain Cancer

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