Hey, y’all! Perhaps you’ve been wondering what’s been going on since we last spoke.
The answer is . . . not much (which has been splendid)—and at the same time, a bunch.
Overall, the past month or so has been a nice little respite from intensive treatment . . . and all the ick that goes with it.
My hair is growing back with gusto, my eyebrows are getting stronger every day, and—on the sadder side—I now need to shave my legs again. In addition, despite having a uniboob (more on that in a minute), I’ve felt mostly like a regular, functioning human again, physically (the extra sparkle on this leotard being that I can sleep on my side—and even my stomach—again!), which has been pretty damn nice.
In terms of treatment, it’s almost GO TIME again: I’ve been working with a wonderful occupational therapist (whom I secretly want to be my bestie, although I think she’d judge me if she knew how many Oreos I can put away in a sitting) on my range of motion, and although there is STILL a lot more stiffness on my left side (where the tumor was and the ten lymph nodes were removed), my flexibility on both sides is in the “normal” range—which means I’m cleared to start radiation.
In preparation for THAT, I’ve also been getting chummier with the plastic surgeon, who’s been filling the heck out of the expander on my left side—and actually REDUCING the amount of fluid in the expander on the right side.
So basically I have one boob right now.
Y’all know the symmetry stan in my soul is twitching a little bit about this—but I understand the reasoning: the right boob has been “deflated” so that the radiation “laser beams” can shoot across the right side of my chest and into the left side at an angle that will allow them to steer clear of my heart; meanwhile, the left boob HAS to be “inflated” NOW, while the skin is more pliable, because the radiation to the left side will make that skin resistant to stretching (for this reason, the left expander has now been filled to a greater capacity than what the size of that boob will ultimately be, in anticipation that it will shrink with radiation . . . but in the meantime, I’ve got some real va-va-va-VOOM going on with Lefty).
So tomorrow is when it all gets underway. I’ll visit the radiologist for a simulation/scan, whereby they’ll figure out how to position everything for radiation, which will start on April 12. I will also get my radiation schedule tomorrow, so at this point, all I know is that it will happen every weekday for 4-6 weeks, and that they’re going to try to get me morning appointments, per my request. And I’ll continue seeing the occupational therapist, to maintain range of motion when radiation starts to clench things up.
In terms of the other treatment, I just got a letter from my insurance company, stating that those meds have been approved, so I’m just awaiting a “chemo education” appointment with the oncologist, after which I’ll get started on the oral chemo (which I’ll take for a YEAR, it looks like) along with a hormone therapy treatment called a Goserelin acetate implant—about which I learned FROM THE INSURANCE LETTER (Dr. Cool-and-Calm has a great bedside manner, but he sometimes fails to mention stuff).
Still doing the “Dr. Google” research on that, but I’m going to need to talk to Dr. CaC to get clear about (a) why it’s happening, and (b) why NOW. The reason I’m curious is because:
(a) the drug that’s going to be implanted (also known as Zoladex) is a hormone treatment, and from what I can tell (with the VAST medical knowledge I’ve picked up from a cursory Google search) it’s often prescribed for hormone-positive breast cancer, which mine is NOT—and . . .
(b) about a month and a half into my first phase of chemo, I mentioned to Dr. CaC that (TMI WARNING: skip to the next paragraph if you don’t want to know about lady crotch stuff) since starting the chemo (which coincided with the start of my period that month), my period had NOT STOPPED. At that point, he suggested Zoladex (injections, not implants) as a remedy—but once I read up on the side effects, I decided that those would be more annoying to me than this mega-period. And besides, I felt like I had enough physical crap to deal with—who needed potential mood swings as well? So I declined the offer. Eventually, I stopped bleeding on my own (shortly after I told the doctor about it, in fact), and haven’t had a period since.
AND IT IS GLORIOUS. I get a few hot flashes now and then, but otherwise, I got no complaints! My skin is clearer, I don’t get cramps, and I don’t get that horrendous PMS boob pain (well . . . I mean, NOW I don’t, for SURE, but even before the mastectomy, the girls were just all chill, all the time ).
In short, things are pretty damn good, hormonally speaking—and while I will happily rock that boat if it will increase my chances of sticking around here, I feel like I need more clarity around why I’m rowing my dinghy into those waters.
As we yearn, so we learn
Since I saddled up for this, my first cancer rodeo, there has of course been no shortage of shit I’ve learned—and as you know, my hope is that this blog may be of some use to someone down the line, who’s just climbed aboard their own buckin’ bronco. The two bits of recent education I’m about to share, however, are mostly for entertainment value . . .
The first of these, I learned from the last cancer memoir I read—since which time, I’ve finally moved away from those and back to fiction (I’m currently enjoying the heck out of Lucy by the Sea, by Elizabeth Strout) . . . but I digress. The point is, remember a few blog posts ago, when I was extolling the virtues of the Ursa Major skin care line? And talking about how pretty I felt?
(I mean, I really did feel pretty, which was kind of ironic given the fact that my eyebrows and eyelashes were gone; I chalked it up in part to the idea that maybe, with all auxiliary facial features stripped away, I was better able to appreciate the stuff I had left: the color and shape of my eyes, the beauty mark (read: mole) on my chin, my smile . . . and of course my skin, made smoother and dewier by, I believed, the constellation (*wink*) of skin care products I’d bought. I’d even started working out a chunk of blog post in my head to talk about it . . . but anyway . . .)
Thanks to that last cancer memoir, I learned that it was not the products contributing to my beauty . . .
It was the CHEMO.
I mean, sure, a little moisturizer never hurts, but in The Cancer Channel, the author talks about her own glowing skin, and how she learned from her dermatologist that because chemo drugs target fast-replicating cells—and skin cells are on that list—it often has similar effects on one’s appearance as a chemical peel or microdermabrasion! They call it the “chemo glow”—and although my rudimentary internet research didn’t turn up very much about it, I did find it mentioned in this blog—which I’m sharing less as definitive proof that chemo can make you pretty than as a “worth a read” discovery (I think it’s well-written, and now want to know more of her story).
Which, I guess, just goes to show that there are little gifts to be found in all of this. Not the least of which is that I can stop spending $85 on facial serum (which it seems I was going to have to do, anyway, since it hasn’t been in stock anywhere for months).
And speaking of entertainment value . . . the OTHER thing I’ve learned since the last time we spoke is that this whole situation has a connection to my childhood (a weird and tenuous connection, but still).
I’ve been getting my cancer treatments at Sarah Cannon Cancer Center—primarily at two specific hospitals, although there are Sarah Cannon Centers in hospitals across the Kansas City metro area. Up until now, I’ve been (a) focused on all the OTHER stuff surrounding this whole experience, and (b) just assuming the centers were founded by (or in the name of) some 80s-era socialite who had some sort of personal experience (either by way of her own, or a loved one’s diagnosis) with breast cancer, and access to some money (either her own, or a loved one’s). So, sad to say, I never really gave a ton of thought to who Sarah Cannon actually was.
Do YOU know . . . ?
I’ll give you a hint:
So there I was, awaiting an appointment with the radiologist, and I noticed a deck of Sarah Cannon Cancer Center pamphlets on a table next to me. I picked one up to pass a little time . . .
. . . and that is how I discovered that Sarah Cannon was none other than MINNIE PEARL.
While I was never a fan of hers in particular back in my baby years (tho’ I did have a little crush on Buck Owens), I did watch Hee Haw regularly, and got quite a little-kid kick out of it. (I was proud to know by heart the refrains to both “Gloom, Despair, and Agony on Me,” and “Where Oh Where Are You Tonight.” I mean, that was heady stuff for a first grader . . . and apparently still is, as evidenced by the fact that MY first grader—who’s been keeping me company while I write this—is currently dancing around and singing, “Hee hee hee HAW HAW!” and looking up Hee Haw videos on my phone for his stuffed animals to watch. I’m pretty sure I already have some regrets.)
So there you have it: cancer has the power to make you pretty AND forge connections between you and 1970s prime time TV icons.
Like I said: little gifts. I mean, don’t get me wrong: given the choice, I’d return BOTH of these gifts, even if only for store credit—but look at me, finding nuggets of gold in the turd.
Le Freak! C’est chic!
. . . and one of the turdier parts of this whole business is that I have officially entered the Freaking Out About Everything phase.
I may have mentioned this previously, but I was surprised to learn that I will NOT be getting regularly scheduled scans to check for the return of the cancer once I’ve finished my treatments; instead, my oncologist will order them as he sees fit, based on my lab work and what I report to him during the regularly scheduled visits I’ll have with him.
While I’ve been assured by multiple people that this is (in most cases) protocol now, I’ve still already warned Dr. Cool-and-Calm to get ready for me to be paranoid about EVERYTHING from here on out.
And y’all, I’m here to tell you that “here on out” has officially begun.
First, it was a back ache. I got up from my office chair one afternoon, and my lower back seized in a way that had me shuffling around in that pelvis-first, old man kinda way. At first I thought little of it; I’ve had back issues on and off for years, often out of nowhere. (Once, during my first week at a new job, I swung my legs to the side to get out of my car upon arrival at work . . . and wound up getting pelvis-walked right back out to said truck and sent home, once my manager saw the state I was in. Another time, I was experiencing a mildly irritating twinge in my lower back BEFORE work (different job this time), so en route, I turned on my seat warmer, thinking that would help. BIG MISTAKE. By the time I arrived at work 40 minutes later, I couldn’t even swing my legs out. This time, I was escorted INTO the building by a coworker—possibly the same one who later wheeled me to the restroom in my office chair, having seen my slow and feeble attempt to shuffle my way there and taken pity on me. Or the one who informed the company owner of my woes, drawing her out of her office with her own personal Tens machine, which she attached to my lower back, getting full view of my tatty underwear AND my tramp stamp. Who knows? The more of that day I can wipe from my memory, the better. But I digress.)
THIS, however, was my first experience with back pain THAT COULD BE METASTASIS TO MY SPINE, HOLY SHIT. (I mean, technically, it could have been that at ANY point in the past—but in the past, the thought never would have occurred to me.)
Oh, it didn’t occur to me IMMEDIATELY—the fact that I’m sometimes slow on the uptake being an odd sort of mercy, here—but rather later that evening, at my mom’s house. I was still having a mild ache (which by then would disappear after three or four old man steps after standing up), and she asked about it when I rose from my chair and started crotch-shuffling to her bathroom. I blithely explained it away as I (figuratively) skipped to the loo, saying I had no idea what I’d done, but that it had started earlier that day . . .
. . . and then, as I peed, that slow-moving uptake sped up and hit me smack in the face.
And there I was, in my mom’s tiny little apartment bathroom, feeling all tingly and heart-beaty and twirly and melty all at once, but I COULD NOT start blubbering, because I had to go back out there to a 92-year-old lady and my two sweet-faced children, NONE of whom I wanted to drag into this particular moment of panic. So I took a few deep breaths and focused on the facts: the pain was already much better than it had been earlier in the day; even earlier in the day, I’d discovered that getting up from my desk and moving around made a huge difference; and I didn’t have any of the key symptoms of spine metastasis I found with a quick Google search (oh come on, don’t pretend you don’t take your phone into the john with you). After a few more deep breaths, I was able to return to the living room and act like a normal person.
Fortunately, an adjustment to my desk chair (one of the fancy ergonomic ones)—and to the way I sat in it—did the trick, and the back pain was gone entirely after a day.
Then came the vertigo.
Vertigo is yet another issue I’ve had in the past—and like in the past, it first hit me in the middle of the night. The first time (somewhere around 2013), I got up to use the restroom, and crashed straight into a wall. This time, I didn’t even get up; rather, I was rudely awakened by the sudden sensation that someone had managed to sneak me onto a carnival ride (which I already hate) while I slept. I opened my eyes to find the wall next to my bed rolling repeatedly towards my face. So I closed them again, but sat up and swung my legs off the bed (not sure where I thought I was going, except possibly straight into ANOTHER wall), then took deep breaths until the feeling passed.
In retrospect, the issues started earlier that evening, long before I went to sleep; I was lying in bed, on my right side, reading, and suddenly the pillow beneath my right ear started buzzing. I lifted my head, looked at the pillow, leaned closer . . . yep, that thing was definitely buzzing. Only . . . wait . . . it didn’t buzz when I lay the OTHER side of my head down on it . . .
As I struggled to make sense of what was happening, the buzzing noise turned into a whooshing sound, like someone had just flushed the toilet and it was still running. By now I knew better than to go and lay my head on the toilet; however, it became clear that the issue was neither the pillow NOR the toilet, but rather my ear. About the time I came to THAT conclusion, the noise stopped. I shrugged and continued reading.
Later, when I was awakened by the vertigo, I discovered that it had brought a friend: the familiar buzzing . . . which turned to whooshing as the spinning slowed . . . and then disappeared about the same time the whirling came to a halt.
All of this lasted fewer than two or three minutes.
But over the next several days, similar scenes would play out at random moments: sitting at my desk, working; sitting up in bed, reading; standing in the kitchen, making dinner; and once during a Zoom meeting WHICH I WAS LEADING (I tried to breathe through it and keep talking, but when I realized I was starting to repeat myself, with weird pauses in between, I finally ‘fessed up that I was experiencing my own personal Tilt-a-Whirl, handed the meeting off to a colleague, and went off camera to put my forehead down on my desk until the ride stopped).
After the first day of these episodes (which happened around three or four times a day in the beginning), I called Dr Cool-and-Calm’s office to report what was happening, hoping for some assurance that I did not have brain cancer. The nurse practitioner who called me back told me to hit up a Minute Clinic or an urgent care to have my ears checked for fluid, and called in a prescription for antihistamines. I chose to take that as, “it’s probably nothing,” and put some pants on to see someone about the spinning.
The urgent care visit turned up nothing in my ears; the nurse practitioner there shared with me that she’d been suffering from vertigo for FIVE YEARS, and nobody had yet figured out the cause. She sent me home with an instruction sheet for the Epley maneuver, and wished me luck in avoiding the five-year plan she was on.
Over the next few days, the paranoia gradually crept back into my soul—ironically, because the episodes were decreasing in frequency. Each time I racked up a considerable amount of time between spells, I’d allow myself to hope that I’d just had my last one—and by the time I’d gone more than 24 hours without one, I decided the whole ordeal was over . . .
. . . and then when the next one came, it reduced me to tears of frustration and panic.
Finally, I decided to try the antihistamines (which I’d picked up, but avoided taking because I didn’t want to be a walking zombie). Although the bottle said to take them “every 6 to 12 hours as needed,” I took them right after dinner for a few nights, and then crashed out as soon as my littler dude was in bed.
It seemed to help; the episodes became relatively mild—most of them, in fact, involved only the tinnitus, and NOT the vertigo, and when the vertigo DID happen, it was less intense, and lasted seconds rather than minutes.
Eventually, I made it THREE WHOLE DAYS without an episode of any kind, and last night, I ditched the antihistamines (warily but happily, as they’d begun causing some wicked restless leg). I’m happy to report that I’m still vertigo-free! I’d knock on wood for luck, but rapping myself in the head like that could cause a reoccurrence, so instead I’ll just eat a leprechaun or something.
The point of all of this, though, is just to say that for months, I counted the days until I was done with chemo—and then more days until the surgery was behind me—assuming THAT STUFF was the hard part . . . but HOO-WEE, the emotional sturm und drang of trying to hold your shit together (at work and at home) while you’re periodically panicking about metastasis every time you burp or find a bit of sock lint between your toes is NO JOKE.
Storytime: I have a friend (no, not a quote-unquote “friend,” but an actual person who’s NOT me) who once drove three-plus hours to a nearby city to give a client presentation for her job. When she got out of her car at the meeting site, she slammed her finger in the car door. She walked inside the building and went straight into the restroom to collect herself—but the pain was so intense that she PASSED OUT, knocking her head on the bathroom counter. She came to, arranged her hair to cover the new bruise blooming on the side of her face, walked into the conference room, and gave her presentation. Then, when the meeting was over, she drove the three-plus hours back home.
At the time, I thought she was OUT OF HER MIND—and OK, I still kinda do—but now I have a little more empathy, because I feel like that kind of energy is what I’m bringing to every day. Only instead of a probable concussion and a sausage finger, I’m presenting through a periodic sense of panic and a nagging sense of doom. Which may be how other people operate on the regular (journalists, for example, because how could they not?), but I’m not accustomed to it. So today, I looked up therapists who take my insurance, and contacted one for a consultation (I’m hoping that since I’ve already met my out-of-pocket deductible for the year, the therapy will be FREE—but I’m not entirely sure how that works, if it’s coded differently, or what). I figure it will be good to sturm-dump on someone other than Love Tank for a change.
Wish me luck!
I’m your vehicle, Babe . . .
And speaking of anxiety . . . I’m less than three weeks out from my runway debut! The Bra Couture KC event looms—and although the organizers now think I’m a total weirdo, they’re still letting me be a model.
It all started when I was on the phone one day with the Head Chick in Charge (HCIC) of the event; we were getting some other details squared away (including my music for the runway, for which I chose my official “batter up!” song), and I asked her about the deadline to purchase tickets with my model discount. She said she’d have the Ticket Queen (TQ) send me the information again.
TQ did send me an email—but shortly thereafter, she called me to ask if I had a ballpark idea of how many tickets I’d be needing.
“Two,” I said.
“Have you . . . invited people?” she asked, haltingly.
I told her NO, I hadn’t, and tried to explain one of my many weirdnesses: whereas many people, when they’re giving a public performance of some sort, feel COMFORTED by having people they know and love in the audience (and, in fact, ASK people to come support them for that reason), I’m the opposite—I’m much less nervous in front of a crowd of total strangers.
After all, those are people I’ll likely never see again if I crash and burn before their eyes.
She laughed and told me I was funny . . . but then the whole thing turned into a (literal) game of telephone: next thing I knew, I was getting calls from HCIC—which I couldn’t pick up, because by then, I was in meetings at work. After two attempts to call me, HCIC then TEXTED me and said she’d spoken to TQ, who told her I was EMBARRASSED to be on the runway. She assured me that I DID NOT have to do this, and that she could find another model (by that time, in fact, she’d already given my designer (Galentino) a heads-up that there might be a pivot . . . so then Galentino was texting me . . . it was a whole thing).
When I was able to text back, I re-explained my weirdness, and assured her that I was not embarrassed by the idea of being on the runway; I could be reading poetry, giving a lecture on beluga whales, or playing the triangle in a Partridge Family cover band, and my feelings would be the same. However, I said, I understood that part of the point was to generate ticket sales, so if she had another person whom she thought would do a better job of that, I’d step down, no hard feelings. Whatever was best for the event, I was happy to do. Heck, I told her, I’d even buy a ticket and come to the event myself!
She wrote back and said her primary concern was that I was excited to be on the runway. So I did not get kicked off the island, and all was well. And I AM excited about my design! Galentino knocked it out of the park—and rest assured, I will share pictures!
In the meantime, as always, I’m so grateful to y’all for hanging in!
Great God in Heaven, you know I LOOOOOOOOVE youuuuuuuuuuu . . .
8 Replies to “The “little c” chronicles, Part 16: So on we go . . .”
And 🍷, too, if you’re allowed to have that…
I just … love you … and will never ever get over how amazing you are. Big hugs!!!! Stay fierce!!!
So much to say… YES to all the stops you’ve taken and / or limped though; YES to temporary panic; YES to only strangers in any audience I’m presenting or parading to; YES to therapists and especially oncology therapists if you can find them. xoxoxoxox (which now reads to me as boob no-boob boob no-boob etc) xo
NOT “stops.” Steps! Yes to all the steps you’ve taken! s i g h
You are a mighty warrior!!!!
Damn, sweet woman. I hadn’t read the blog in a while. You are freaking incredible. Currently chair dancing to your walk-up song. I know Bra Couture and now want to buy a ticket. xo
Love you Chandra! I don’t know how you find the energy and focus to update us all with your wit and truthtelling, but I’m glad you do. Hoping there’ll be no more vertigo but give a yell if you need a ride or MollyDash to bring a treat with no ridiculous surcharges or any charges at all for that matter. Hoping you get all the answers you ‘re asking for and that radiation goes ok. Thinking of you always!