Let’s start with the big news: I have a new primary doctor. More importantly, I like her. Which, if you’ve been reading here a while, you know isn’t an insignificant thing. I was a little daunted thinking about this task just after we moved here, but I put what I’ve learned as a professional patient to good use in selecting a primary care physician (PCP).
Basically, there are four things I look at now when I’m hunting for a new doctor here in the US:
DO over MD: There’s just something more humane about the way I’ve been treated by DOs. I’m not saying that all MDs are terrible and myopic—far from it. But I’ve never been treated like crap by a DO yet. So I figure why mess with what works.
Woman: It has historically been helpful for me to receive care from women. I’m not saying that all male doctors are terrible either, but my experience has been telling. Percentage-wise? Dudes are way more likely to be arrogant jerks. And arrogance gets in the way of my getting good care. Arrogance literally traumatized me. Not letting that happen again if I can help it.
Insurance: I’m on Medicare due to disability, and not every doctor wants to deal with that. I always check before I schedule.
Ratings and Reviews: Most doctors these days have been rated by patients, either on Google or Healthgrades or, you know, somewhere. I read those reviews. All of them. (Coincidentally, I just received an email this morning telling me people found my review of Dr. Lee Hartner helpful. Suck an egg, Hartner. You absolute ass.
So yesterday’s encounter went really well because one of the things my new doctor said was something like, “I don’t know a whole lot about brain cancer.”
Music to my ears, kids. I immediately knew I was in the right place when she said that. Doctors who admit they don’t know everything are magical. Like unicorns. I told her that was good, and maybe we’d both learn something.
“Also,” I said, “I have, uh, some trauma from a doctor who thought he knew everything and I knew nothing. So my brain tumor was mis- or undiagnosed for a couple of years. I’m going to be a little anxious every time I’m here.” My voice got a little quivery and I could feel a few tears bubbling. I was tired and trying to stifle the medical PTSD episode that wanted desperately to be let out and recognized. I didn’t cry, but I came really close.
Anyway, I told her about my extreme sensitivity to meds, how doctors always want to prescribe me medicine by weight and it always ends badly for me and she said something like, “I get it. I’m the same way.”
So I found a new primary doctor in one try. That’s nothing short of amazing.
I had a phone visit with my palliative care PRN this morning. Long story short I’m going to take a short course of prednisone during CZT training to make sure I can do the thing. Because it’s only a week’s worth of generic ‘roids at a low dose, my Rx only costs about $4.
Which brings me to the whole “Medicare can negotiate drug prices” part of the Inflation Reduction Act. I’ve read in a few places that it will benefit seniors specifically, but I’m not sure if disabled people on Medicare are just casually being erased from the headlines again, or if I’m still extra screwed. I’m trying to find an answer.
This is just one reason why I’m still engaged politically when I should be “focusing on getting better.” My shingles vaccines, which I’ve mentioned before, cost $200 EACH, for example, and I’m not allowed to make enough money for our household to survive or they’ll cut my disability income completely and we’ll have even less than not enough.
Maybe if the “safety net” wasn’t an all or nothing proposition?
Bottom line, if anyone out there wants me to shut up about it already (and, yes, people do sometimes say it out loud) they can kiss my astrocytoma.
I’m relieved it’s only $4 for this prescription. The antibiotic ointment my oncologist prescribed a couple of weeks ago cost $35. Not exactly in the budget, and I prefer to put my creativity into Zentangling—not wondering how to afford medicine.
I know these posts aren’t fun for people to read. They are much less fun to write. But no one is going to do it for me. This is as boot-strappy as it gets for the girl who grew up in the most polluted county in Indiana. (In case someone tries to blame my cellphone usage for my brain cancer again instead of spending equal time wondering if our environmental regulations are too lax.)
Today I’m kind of a mixed bag of hope and first-world despair. My disability check posted this morning. (It was Patreon, a much-needed but also much smaller source of income, that posted on Monday.)
For kicks, I decided to check on my closest McDonald’s* (the only one for miles not owned by the family of Rodney Davis) but it’s still not delivering through GrubHub*.
I’m worried they’re not renewing their contract now and I’m trying to sort out what to do about chemo now that the only joy my tastebuds have in life has been taken from me.
Will I even take temozolomide again?
I’m just kidding. Lighten up, loves. It’s only brain cancer, and there are still Ben and Jerry*.
Also, before anyone goes to the trouble of suggesting it, the restaurant is on DoorDash, but we don’t like to talk about DoorDash here.
Oh! Talking about chemo reminds me! A CounterSocial friend sent me a link to this article while I was suffering from insomnia last night: New Injectable Gel Offers Promise for Tough-to-Treat Brain Tumors. It’s for GBM, which is not my type of brain cancer, but it’s the most aggressive type of brain cancer, so that’s very cool. There’s also potential for this “brain caulk,” as my friend called it, to work against other solid Tumors. Breast cancer was mentioned.
Let’s go Badgers!
My supply kit for Zentangle training arrived yesterday. I went through the checklist, read the info packet, and now I’m just like, can we start this now? How about now?
Give me hope and a couple of things to be grateful for (like CZT training, a more-than-generous GoFundMe donation, an FBI raid of Mar-a-Lago, and an accessible shower) and I almost—ALMOST—dont feel sorry for myself about the universe putting my beloved caramel frappe just out of reach.
Since I was still awake at 5:00 am this morning, I’m not committing to anything that can’t be paused for a nap for the rest of the day. Probably going to tuck into a 6-hour video on drawing the eye—part of a drawing instructional series taught by Marc Leone of Northern Kentucky University. (See The Drawing Database channel on YouTube if you’re looking for a non-profit, collegiate approach to studying drawing. It’s kind of amazing. And its freaking free!)
I woke up to a deposit notification email from my bank this morning and I was all set to celebrate with my favorite breakfast, but the food delivery app said the restaurant was closed.
It wasn’t the neighborhood McDonald’s that was closed, just GrubHub’s delivery. But since I can’t drive it might as well be closed.
It’s Monday, and I feel personally attacked. Not a great start to my week.
Now, Dan probably would have made a run for me, but I didn’t suggest it because 1.) I budget my asks; 2.) the Corolla smells like it’s burning lately; and 3.) the garage door only closes if Dan pushes it down past the Nope Point—the spot about halfway down the track where it meets some imperceptible obstruction and reverses course.
I think the garage door and my esophagus are in collusion, now that I’m writing this.
My whole point in bringing up the car and the garage is just that I worry one or both will crap out soon if we go around pretending like the world isn’t comprised of entropy and horrendously bad timing. That kind of stuff sucks when all else is fine. And, spoiler alert: hardly anything is fine over here.
Whew! That was a long walk just to tell you I went for another restaurant’s version of a breakfast biscuit and iced coffee this morning, but it wasn’t as good. I’ve been saying for years McDonald’s puts crack in their beverages.
I don’t really believe it’s crack, but they do something.
At any rate, I’m caffeinated and fed, and it was cheaper than our usual breakfast treat by about $7 dollars.
Mom says that work is still happening despite all the rain in the St. Louis area. The plumbers and electricians are making noise in her basement. Just one more item to add to the list of things I’m grateful for—not dealing with the sounds of the renovation. I’m sure it wouldn’t help to hear hammering and sawing while the effects of my second covid booster are wearing off.
Speaking of that second booster. I don’t feel nearly as tired as yesterday, but I do still feel like I am getting over the flu. Kind of achy. Suppressed appetite. Maybe that’s not too terrible for the cancer muggles, but you all know I have some, uh, health stuff going on.
Honestly thought I’d beat a lot of people to the fourth dose, but I was given Evusheld. I think the recommendation is to wait a couple of weeks after that for another vaccine if you’re due for one. Add the wait time for that to the various chemo and cancer complications, and yesterday was the first chance I really had to get caught up.
Speaking of vaccinations: Mom said she would cover the roughly $200 out-of-pocket on the second shingles vaccine for me when I get it. (Yes. It’s a lot if you’re on Medicare and under age 50. Just a heads up to any of my fellow immunocompromised and disabled folks out there who might need it.)
And a reminder to everyone currently healthy: heathcare in the US is still an abomination. I know when we’re blessed with decent health, we think it’s forever. But it’s not. Plan accordingly.
Because I’ve been so tired, I’ve been watching a lot of art documentaries on YouTube from bed. It’s amazing to me how completely contradictory two docs about the same subject can be. One will state nonchalantly that Van Gogh’s success wasn’t realized until after his death, and the next one in the queue will emphatically state that his lack of succes is just a common myth.
But success is arbitrarily defined, isn’t it? And it depends who you ask, doesn’t it? If Van Gogh had considered himself a success, there isn’t much evidence of it. Seeing how he died of a self-inflicted gunshot wound and all.
So philosophically speaking, are you a success if only you realize it? As long as others recognize it? How many others? And do others have to be your contemporaries or can others call you a success hundreds of years later because some big-shot commissioned your work in a time when mostly big-shots commissioned paintings? And does it matter how close to the end of your life you were?
Doesn’t really matter to me in the here and now, but I like to ponder things that don’t involve my own cancer. You know, as a treat.
I’m just rambling at this point, so I’ll wrap up with a link to the renovation GoFundMe and wish you all a happy Taco Tuesday. Burritos are also acceptable.