That’s right, y’all. The end of this here tunnel is coming into view.
If all goes as planned, I will emerge, squinting, from this (by that time) year-long underground adventure on September 23.
On that morning, I will take my last oral chemo pills—and at that point (again, crossing everything I have two of (yep—even those) that no surprises occur between now and then), my treatment will be complete.
So here’s the countdown breakdown:
- Radiation — last treatment on May 22
- Immunotherapy — last treatment on August 15
- Oral chemo — last gulp on September 23
Now that surgery’s in the rearview and I have started all three of the above (the immunotherapy being the one PRE-surgery treatment that has continued post-surgery; the rest are new), and have more of an idea of how it’s going to work, I do have a few updates/corrections to make from my last post.
First of all, I originally thought I was going to be on the chemo pills for a year, because the letter my insurance company sent to let me know that the medication had been approved said that they’d approved twelve 30-day cycles (which is just a handful of days shy of a year). So I girded my loins for that . . .
. . . but happily, that’s not the case; when I met with Dr. Cool-and-Calm’s nurse practitioner to talk about dosage, side effects, etc., she let me know that I’d be taking the medication for EIGHT 21-day cycles (each cycle consisting of 14 days of twice-daily pill popping (three pills each pop) and 7 days of “rest”), which works out to about six months. I received the meds (which arrive by mail) on Friday, April 7, and started taking them that night, so my last dose will then happen on a beautiful (no matter WTF the weather’s like) Saturday morning in September.
As for the radiation, which I started on April 12, I was originally told I’d have 33 treatments. When I met with the radiologist today (after my first official week of radiation), however, I learned that I will actually only be having 28 treatments. Apparently, 33 is the maximum number of treatments, so they tell most patients they’ll be having (and schedule them for) that many—then adjust later if necessary, once they get the plan figured out based on each individual case. Weird, I know, but the nurse explained that it works a lot better THIS way than it does to give a patient an initial estimate that turns out to be LOWER than the amount of treatments they end up needing. This way, if there’s a surprise, it’s a good one.
But really, aside from the fact that it’s NOT ACTUALLY GOOD FOR YOU (although it’s useful if you have cancer), I gotta say I don’t mind radiation a-tall! I have a standing 8 a.m. appointment every week day, so I leave my house around 7:30 (without morning traffic, I could probably leave around 7:40, but it’s worth 10 extra minutes of car singing each way to get it done first thing). Once I get there, I check myself in by booping a little plastic card across a scanner. Then someone comes to fetch me and usher me into a private changing room, where I ditch my shirt and don a gown (keeping my pants and shoes on), lock up my belongings, and give some nice ladies my name and birthdate. At that point, I get escorted to a table in a lovely dark room (enhanced by back-lit ceiling art, which is lost on me because I close my eyes during the treatment), where I lie comfortably for ten minutes, covered in warm blankets and feeling nothing. Honestly, the worst part is that they drape a little square of brass mesh material (reminiscent—to me, anyway—of a disco halter top) over my exposed chest, and YOWZA! That sucker is COLD! (Since that first day, they’ve made a point of warming it up a little by draping it across my legs and placing the warm blanket on top of it for a minute or so before we get started . . . but it’s still mufuggin’ cold.) Otherwise, though, if not for periodic instructions to hold my breath, I could totally get a little snooze in during treatment.
And while I’m aware that the side effects from both the radiation and the chemo meds could increase over time, at this point I still feel pretty normal: no obvious side effects from the chemo pills (the ones I was told were most likely to occur are diarrhea and hand & foot syndrome—so I’ve been bracing for THAT potential ball-o-fun, but so far, nothing), and no skin burning from the radiation. I feel mild tingling maybe an hour or so after treatment some days—like a sunburn coming on—but all I do is slap some lotion on, and I’m good (I’ve yet to even use the prescription cream they gave me for the occasion—but the nurse told me today that I should go ahead and start using that sooner rather than later; I don’t have to wait for discomfort).
This may have something to do with the fact that, per post-op instructions from the plastic surgeon, I have been moisturizing my chestal area for a few weeks now. When I met with him to have my bandages removed, he said something to the effect of, “You can start using lotion in this area now, because that’s what your skin is used to.”
And I said nothing, but inside, I was thinking, “Uhhhh, WHUH . . . ? Are there people out there in them streets who are lotioning their tits?? Because I can assure you, mister, that these (former) ladies are NOT, in fact, ‘used to’ that.” Still, in anticipation of getting my expanders filled, I thought it might be of use to have more pliable skin in that area. Plus, a generous and swanky friend sent me some super-bougie oils for just that reason, so it seemed like the universe was telling me to grease up the girls. But I digress. Point is, maybe my religious moisturization of late is why the radiation has had little negative effect on my skin thus far. OR maybe it’s just too soon for me to get crispy. I suppose time will tell.
For the love of money
In other news, well . . . there’s NOT much other news. Life is (blessedly) pretty boring, aside from a few annoying insurance issues. Nothing major—I still feel really fortunate to have skated through thus far without the hairball of denials and appeals some folx go through—but basically the sea monkey (aka the hospital) has my money.
Because of the exhorbitant costs of both my last couple of chemo treatments (which occurred in January) and, of course, my surgery (in February), it took no time at all for me to reach my out-of-pocket maximum for 2023.
In fact, I thought I’d reached it after the first three bills came through. So imagine my surprise, after shelling out for those bills, to get a bill from one of my physicians (let’s call him Dr. Money Grabs) for roughly a thousand dollars! Thus began a close and personal phone relationship with my insurance company.
The first person I talked to said that the bill in question was eligible for reprocessing; she’d put it through the system again, and payment would be issued to Dr. Money Grabs within 10-15 business days.
The second person I talked to (the next day) happily agreed to phone Dr. MG’s office on my behalf and explain the situation, so it wouldn’t look like I was trying to skip out on my bill or anything. (Which was the whole reason for my call, so yay.)
The third person I talked to MANY days later, when I called back because I’d received an EOB showing “patient responsibilities” I didn’t understand (I thought I was done being a responsible patient for the year). She confused the living hell out of me, but one thing I got out of the conversation was that the claim for Dr. Money Grabs had ALREADY been reprocessed, and had, in fact, been billed correctly . . . so I still owed that money.
Because she was so confusing, and because our (40-minute!) conversation had run right up into school pick-up time for my littler dude, I thanked her politely, hung up, and whined to Love Tank, who kindly provided me with the receipts, as it were, to prove we’d already been billed for (and paid) the out-of-pocket maximum, so that I could call back armed.
The fourth person I talked to explained the situation A LOT more clearly (in the course of a roughly 12 minute call): What happened was that we got a HUGE bill from the hospital (eating up more than 90% of my out-of-pocket maximum), paid it (along with a couple of other piddly ones that sucked up the rest of the maximum) . . .
. . . and then, six days after we paid that big-ass bill, for reasons only God and The Shadow know, that claim got ADJUSTED, so that we actually owed $1000 LESS than what we’d already paid. Shortly thereafter, Dr. MG’s (hefty) claim came through—and because, according to the insurance company, I was now (thanks to that adjusted claim) still $1000 short of my out-of-pocket max, then I still owed a thousand bucks on Dr. MG’s bill.
So at this point, I have shelled out a thousand bucks MORE than my out-of-pocket maximum . . . and now get to begin the super-fun journey of getting the hospital to reimburse us for those extra thousand bucks we paid on that big-ass hospital bill. (Oh, and did I mention? The pluckers have now sent a SECOND BILL for the amount of the adjusted claim, like they ain’t already have too much of my money!)
So I guess the lesson in all of this is that it DOES NOT PAY to pay your bills on time!
And for real: how the fleck do people deal with this when they DO NOT have the good fortune of a decent savings account? I mean, there was a time in my own life where I most certainly did NOT have a thousand bucks to just fling around, and something like this would have sucked me under like a rip tide—so the fact that despite all this, my family has still been eating dinner is not lost on me.
And I suppose that’s the whole point of trussing myself up in a bejeweled leather number and traipsing down a runway for the Bra Couture fundraising event, which is in . . . holy shit . . . three days! I spent Sunday afternoon at a dress rehearsal, and that’s when I learned that each bra is auctioned off (which part I knew) WHILE THE PERSON MODELING THAT BRA IS STILL ON THE RUNWAY IN THAT BRA (which part was news to me).
“Don’t just stand there!” we were told; we’re supposed to be working the crowd, upping the bid!
This is going to be excruciating for me. But I guess it’s the least I can do, given that I’m not generating much money for the event through ticket sales—and given the fact that I understand even more accutely now why this money is necessary.
Wish me luck!
If you sing a song today, you will make a better way
I’m sorry, y’all; I just have to do something here to counteract the fact that the title of this blog post calls to mind the absolute worst song by one of the absolute best bands on the planet.
If you know me, you know that my constant complaint is that September is all the Earth, Wind, and Fire many people know. AND THERE ARE SO MANY BETTER SONGS (my knowledge of which is 100% owing to my sister; she gave me Earth, Wind & Fire, my brother gave me Boston, Steve Miller, and Kraftwerk, and my other sister gave me Marvin Gaye, The Dramatics, and The Isley Brothers . . . my childhood in my family was the musical gift that kept on givin’ . . . but I digress).
And I’ll say it—Boogie Wonderland ain’t it, either (although it’s better than September).
Allow me, then, to offer up nine of my favorite Earth, Wind & Fire songs (one for each member of the group) as penance for the title of this post. Listen to as many or as few as you’d like, but I hope you find at least one that makes you put dusty old September in a drawer.
For belting out in the car with the windows down (there will be waving of hands, but try to keep one on the wheel at all times):
Sing a Song
Sunshine (This one has a hella catchy refrain.)
For car-free (and carefree) occasions when you can wave both hands in the air with impunity:
Devotion (This one has a special place in my heart—and, evidently, my psyche—because once, about 30 years ago, I had a dream in which I was sitting behind the pulpit in a church, and Earth, Wind & Fire came busting through the sanctuary doors in white spandex jumpsuits with colorful feathers down the sleeves, singing this song; I woke myself up laughing with delight.)
If your booty wants to join the party and wave itself around a little, too:
For belting out in the shower (where good bathroom acoustics can take your game to the next level):
Fantasy (I mean, the opening instrumentals alone are worth the price of admission, but there is also the opportunity to SANG.)
I’ll Write a Song For You (WARNING: if you’re new at attempting to channel Philip Bailey, you could injure yourself with this one; it starts off slow and easy, but by the end, you’ll wish you’d stretched first.)
And finally, this one is good for whatever you need in the moment: you can belt it out, wave it out, or shake it out—it’s the whole potato.
Enjoy! And, as always, THANK YOU for hangin’ in. Y’all fill me with—ahem—Gratitude.
(Woops. Guess that makes TEN. But come on, how could I pass that one up in the face of so much love?)
2 Replies to “The “little c” chronicles, Part 17: [I will] remember the [23rd] night of September.”
Thank you for sharing your journey with us. I’ve been silently rooting for you and thought it was time to speak UJP and let you know how impactful you are. Thank you. Also, Sepentine Fire is the world’s greatest kitchen, car, AND shower jam EVAH!!!