Hoo-wee, y’all, A LOT has gone down in the week since I shared my news. So let’s start at the very beginning (a very . . . OK, well, not “a very fine place to start”—how about “a semi-shitty place to start”?)
As promised, before I go down a rabbit hole or two, here’s the pertinent news that came out of this week:
- I will receive both chemotherapy and immunotherapy treatments.
- The chemo will be administered weekly, in two rounds totaling 12 weeks each (so yep—24 weeks of this business).
- For the first round, I’ll be given Cabazitaxel (I think).
- For the second round, I’ll be given a different drug, but which drug I’m given will depend on the results of an echocardiogram to determine the health of my heart toward the end of the first round.
- The immunotherapy drug, Keytruda, will be administered once every three weeks, throughout both chemo cycles, and will last 27 weeks total.
- Surgery will not take place until 30 days after the last chemo treatment.
- I may, in fact, be a candidate for radiation even if I have a mastectomy, because of the size of the tumor (it measured at 4.3 centimeters; the “possible radiation” zone is 4-5 cm, and the “whoa, Nelly, that’s a big’un—we gotta burn that mutha out” zone begins at 5+ cm). The other factor that makes radiation a possibility even with a mastectomy is whether the cancer has spread to the lymph nodes (the biopsy indicated this was NOT the case, but the MRI will tell us more).
And here’s the timeline of treatment-tastic events that I’ve either completed or have scheduled in the upcoming week:
- Monday, 8/1: First meeting with the oncologist
- Tuesday, 8/2: Failed MRI attempt / Creatinine blood test
- Monday, 8/8: Echocardiogram
- Tuesday, 8/9: Phone consult with genetic counselor
- Thursday, 8/11: MRI , second try / Port placement
And here’s where the long-story-made-longer begins . . .
Note: for those of you who've been following along since the last post, I've made some (retroactive) changes; specifically, I've made an attempt to anonymize the professionals on my care team, so as not to put ALLLLLLLLLLLLL of my business out in the wind. SO in an effort to avoid confusion: Dr. Get-It-Done = the surgeon I met with initially, who performed my biopsy, gave me my diagnosis, and walked me through it (the stage, etc)—and who will perform my port placement AND my eventual post-chemo surgery. Peppy McPerks = The nurse navigator assigned to my case, who may in fact be Secret Jesus. Dr. Cool-and-Calm = The oncologist who's building my treatment regimen.
Monday, 8/1: Onward to the oncologist
I received a call on Monday morning from Peppy McPerks, the nurse navigator assigned to my case. She’d been on a mission trip to Colombia when I first met with Dr. Get-It-Done—a meeting she’d normally have attended—so she was calling to introduce herself and touch base. She asked if I had an MRI scheduled yet (yes), and whether I’d met with an oncologist (no). She said she’d get to work scheduling the oncologist visit and call me back. She asked tentatively if I might be able to meet with the oncologist TODAY (which surprised me, as I thought the oncologist visit wouldn’t happen until there were MRI results), or whether I had something else going on. I told her I didn’t have ANYTHING going on that was more important than THIS, so she should rock on with her bad self (OK, I didn’t actually say that, but I might have said, “do your thang”) and I’d make it work. About 20 minutes later, she called back and said she’d gotten me an appointment with the oncologist, Dr. Cool-and-Calm, for that very afternoon.
My husband and I arrived at my 1 p.m. appointment, and as I sat in the waiting area filling out paperwork, a breathless Peppy McPerks arrived from another floor (where she’d bounced out of a new patient consult with Dr. Get-It-Done) to meet me and accompany me to the meeting with Dr. Cool-and-Calm. Although I liked Dr. Cool-and-Calm, and have been happy overall with the care I’m getting, HOO CHILE. Talk about a ball of confusion (” . . . that’s what the world [was that day] . . . HEY hey . . . “); I was smacked every which way by a TON of information and walked out of that meeting with my head whirling. Luckily, my husband took notes like a bawss (hence my ability to coherently give y’all any useful information in this blog post).
When the doctor had left the room, Peppy McPerks stayed and went over all the “treatment-adjacent” information, like side effects (we should be able to keep the nausea under control, she said, but I would definitely lose my hair—likely ALLLLL of it (if you know what I mean—I joked that it would be like getting a free Brazilian), and I’d likely suffer more and more fatigue as the treatments progressed), and talking to our kids about it (which we’d already done), before carefully outlining the next steps in the treatment plan:
- I’d undergo the MRI I already had scheduled for August 2.
- I’d meet with a genetic counselor to find out if I’m the lucky winner of the BRCA gene (which would inform the type of surgery that would be recommended for me post-chemo).
- Once the chemo regimen had been approved by my insurance, I’d be set up with an appointment for chemo education.
- I’d undergo a port placement procedure.
- Let the games begin.
Later that afternoon, Peppy McPerks messaged me that I’d been set up for a port placement procedure at 3 p.m. on Thursday, August 11—the hope being that I can begin chemo treatments the week of August 15.
Tuesday, 8/2: Insurance irritation
On Tuesday morning, I walked into the hospital for my MRI appointment, only to learn—at check-in—that my insurance had denied the procedure. The nice lady who delivered the news handed me a sheet of paper with all the pertinent info (physician, procedure codes, etc.) and advised me to get in touch with Dr. Get-It-Done’s office to see if I could get more information about why the claim was denied, and then call the insurance company. After a twirly few minutes looking for my car on the wrong level of the hospital parking garage, I made it back home, and called Dr. Get-It-Done’s office.
The nice lady THERE told me that my particular insurance agency was notorious for taking awhile to approve procedures. She encouraged me to “call us back in a few days” to see if the procedure had been approved, and said she’d work with me at that point to re-schedule the MRI.
When I hung up, I called trusty Nurse Navigator Peppy, to explain the situation and ask how a delay in getting the MRI would affect the treatment plan she’d laid out for us the day before. She said it wouldn’t affect most of the steps, EXCEPT, of course, for the most important one—the chemo—because they needed the MRI before the start of chemo, to get a baseline assessment from which they’d later be able to determine if the chemo was actually WORKING.
She also said that my insurance agency often declined MRI procedures scheduled at hospitals (as mine was), preferring instead that they be done at independent facilities. The trouble with THAT, she said, was that independent facilities were often booked up for weeks or months, and cancer patients didn’t have the luxury of that kinda time to wait.
BUT! She told me (and here came the glory) I was NOT going to deal with this myself; she was taking over from here. She’d call around to independent imaging facilities and see if she could get me in soon—and if not, we’d file an appeal with the insurance agency and get this business done. I should try not to worry, she said, and she’d get to work and call me back within a day or two with news.
She did not lie. Within half an hour, I received a text from an imaging facility, saying, “Thank you for scheduling an appointment!” I texted Peppy to thank her, and she texted back that she hadn’t had a chance to call me yet, but confirmed that yes, I was set up for an appointment on August 11 for an MRI at an independent joint.
I’ve never had occasion to know this before—FORTUNATELY—but I now understand that nurse navigators are pure magic.
By early afternoon, when that was all over, my stress (and concomitant urge to sleep—y’all know how I do) was elevated, so I went upstairs to crash for a little bit. My nap was cut short, however, by a call from a nice lady at Dr. Cool-and-Calm’s office, who said my insurance company was refusing to approve my chemo regimen until the doctor sent them results from a creatinine blood test. Typically, she said, they’d do this test later in the process, but since my insurance required it in order to approve the treatment, she wondered if I’d be available to come in THAT AFTERNOON to have a blood draw.
So off I went to take care of that. The only interesting thing about that was that it gave me a little taste of the chemo experience. I was led from Dr. Cool-and-Calm’s waiting area to a recliner at one end of a semicircle of recliners, in which were seated a handful of bald women, reading, knitting, and chatting amongst themselves. And even though I still had my hair, and was getting something sucked out of me rather than pumped in, I felt like I was getting a glimpse of My Future People.
After the blood test, I drove to CVS to keep my previously scheduled appointment for my second COVID booster—I was overdue for it, but this situation lit a fire to get it done before I started feeling like crap on a cracker.
As I sat surrounded by displays of fluorescently lit canes, reading glasses, and socks, filling out the intake form, I was stopped cold: for most of my adult life, I’ve been able to quickly and blithely check NO on the extensive list of health issues listed on medical intake forms . . . but as I quickly moved down the list, doing my usual thing (nope! nope! nope! what even is that? nope!), I realized that I now had one big fat YES to check:
Other than that, though, the process went quickly and smoothly, and look at me, needle-phobe extraordinaire, surviving a two-needle afternoon!
Thursday, 8/4: Echocardiogram, Ahoy / Insurance Intrigue
After all the twirliness that occurred on Monday and Tuesday of this past week, it was nice to get a little reprieve for the rest of the week. The only health-related things that happened after Tuesday were two Thursday phone calls: one to inform me I’d been scheduled for an ECG on Monday, August 8, and the other from a lady at my insurance company (I must confess that when I heard who was calling, I thought, “What these mufuggaz about to deny NOW?”), to inform me of my eligibility for a special program offered by the company, whereby my oncologist would have the opportunity to consult 1:1 with oncologists from national cancer centers. She whizzed, in typical salesperson-y fast talk, through a bunch of details I missed—because I was simultaneously trying to log onto a Zoom call for work, and once I realized I wasn’t going to have to jump from my chair and dive through another hoop to get approval on a medical procedure, I tuned out a little—and then she asked, “Does that sound good to you?”
“I . . . uh . . . I’m not sure,” I responded haltingly. I told her I hadn’t been able to catch all the details, and asked if she had information she could email me. She said she did, and would send it immediately. Then, while I futzed with the Zoom settings on the work call to make sure I was muted before speaking with her further (which, OK, is only a click of an icon, but ever since the day I took a meeting lying supine in bed with my laptop on my chest, and accidentally TURNED ON MY CAMERA in an attempt to unmute and say hello—revealing a visage slightly reminiscent of a bullfrog, encircled as it was by about half a dozen each of both pillows and chins—I focus HARD on making sure I’m clicking the right icon), she said something about how when I received the email, I was going to have to click “Accept” to view the information, but would not be signed up for anything until I signed it and clicked “Submit.”
At the time, that little tidbit went in one ear and out the other, but when I received the email in the form of a DocuSign document, it started to make more sense—and make me less comfortable with the whole thing. I mean, by the time I saw the email, I was already feeling skeptical about this “opportunity.” First of all, an insurance company’s primary concern is its own bottom line, right? So would signing up for this insurance-sponsored service mean these physician “consultants” were basically there to convince MY oncologist to go with procedures that would cost the insurance company less money? (And I mean, y’all know me—I love a good discount—but in this case, a clearance sale ain’t what I’m lookin’ fer.) Plus, I wondered, would my oncologist be annoyed by my shoving more cooks into his kitchen (potentially tying his hands or resulting in slower approval of the procedures he recommended, if the “consultant” disagreed) and just be like, “Eff this bitch—let her ass die”?
(OK, that last bit is a little extreme, but again, I make no apologies for being this much of a weirdo.)
So the email still sits unopened in my inbox. I do plan to talk to my care team about it next week, but at this point, I’m not feeling inclined to sign on the dotted line.
And in non-medical (well, medically-adjacent, but not specifically involving doctors) news . . .
Now that things are getting hella real, this has been the week of “do it now, while I can.” This isn’t the morbid “I should have had more Jamocha shakes” moment I experienced the day of the diagnosis; it’s just that since I’m not sure how I’m going to feel once the chemo starts—I only know that I’m gonna be feeling that way for an awfully long time—I’m trying to do ALL THE THINGS NOW. I mean, not like bungee jumping or feasting on monkey brains, but I’m pretty much trying to spend a little more quality time with my people. To that end, I’ve accepted more invitations this week than I’d normally be inclined to, from both my friends and my (literal) homies. For example, during my second night out to dinner and drinks with friends THIS WEEK (I know, I am OFF THE CHAIN, yo), I got an adorable text from my husband, inviting me out on a milkshake date when I got back home. Although I was already stuffed chock full of wings, queso, beans, rice, and fish tacos (oh, did I mention I’m also trying to EAT all the things now, before nothing tastes good anymore?), plus perhaps one margarita too many, I happily accepted and steeled myself, as my sweet friend (who’d generously sprung for my gluttony) drove me home, to make a way out of no way and FIT THAT GODDAMN SHAKE IN MAH BELLEH.
Luckily, when I walked in the door to my house, girded to dump some ice cream on top of my food baby, my husband saw the look of overconsumption-spawned misery on my face (or maybe just the protrusion of the food baby), and kindly suggested we take a raincheck. So we watched a movie until I slipped peacefully into a food-and-booze-induced coma on the couch. The next day, he took me out to lunch at a place we learned about last weekend—an unassuming but delicious Thai/BBQ fusion joint called Buck Tui (10/10 would recommend, but if you decide to check it out, beware of the dead pig on the website)—and then suggested we walk to get shakes, as a family, later that evening.
Which, again, we didn’t do, because at 8 p.m., it was still 91 degrees, with a heat index of 102. And the closest shake place is Sonic, which doesn’t even have malts. If I’m going to walk 5 miles round trip in a heatwave, I deserve a little malt powder, dammit.
So hopefully, we can make time in the coming (cooler) week to take that walk.
And finally, today (Sunday, August 7) was the long-awaited celebration of my little one’s half-birthday.
We’ve been planning to do something to honor the day for months, because his actual birthday is in February (so any celebration thereof basically necessitates an indoor cootie fest of some sort), and COVID has robbed him of two birthdays’ worth of celebrations. So this particular event was not fueled by the cancer diagnosis, per se . . . but the fact that what I initially conceived as a handful of kids coming to the house for a couple of hours of sprinkler-and-sidewalk-chalk fun turned into me renting out an entire movie theater and paying out the ass for the kids to have bare-minimum snacks (the movie theater strictly forbids bringing one’s own food, and my purse isn’t big enough to smuggle goodies for ten kids)? Oh, and letting the half-birthday boy talk me into goody bags (each of which contained gifts he’d handpicked: a Hot Wheels car, a self-inking zoo animal stamp, a set of markers, a blank book to use them on, and ten colored dice)?
Yyyyyeah. That may have had a LITTLE to do with the diagnosis.
At any rate, it worked out OK, and the little dude seemed happy (and he got to spend one last bit of quality time with his next-door bestie, who is literally moving out of town TODAY, and yet took the time to show up for him and a mediocre animated film). Now onward to the start of school for both boys this week, and the start of a new normal for me the week after that.
To help me along that road, however, I’m discovering I have the most amazing friends a soon-to-be bald gal could ask for. Although NONE of it is necessary (because I also have a pretty amazing husband), the little tangible treats-o-love have already started rolling in:
An out-of-state coworker sent THEEEEEE most amazing pastries I’ve ever tasted, all the way from Wolferman’s Bakery (it took serious self control to NOT eat the whole box; instead, I ate 50% of it and offered some up to my older son . . . then harbored secret resentment when he gobbled down the other 50%. But I’m past that now.
A sweet longtime friend, who has been on this train with me since I found the lump (because again, I was SO sure it would be nothing that I told her about it one day over lunch—and then she was dogged in her pursuit of updates, so she was among the first to know the worst) sent me three tubs of Queasy Drops, which are still sitting on my desk as a daily reminder to send her a note of thanks. So one thing that doesn’t look like it’s going to change is my failure to send thank-you notes.
Another kick-ass friend, whom I’ve known since Kindergarten, has already started the “giant earrings” train rollin’, by sending me two pairs of pearl-studded, bracelet-sized hoops (again with no bleepin’ thanks).
And a third beautiful soul is gifting me with yummeh satin PJ pants I chose myself (in a size larger than I need, because my size was sold out—but hey, this allows me to keep eating all the things with impunity if I so choose).
ETA: And OMG, y’all, the hits keep coming: literally two minutes after I finished and published this blog post, my doorbell rang with the delivery of a soft, fuzzy throw from two former coworkers (from two different employers), who happen to be married to each other!
Add to that an avalanche of calls, texts, good vibes and offers of help in all varieties—not to mention the most delicious chocolate chip cookies brought to the theater for me today by my cousin (do my people know me, or what?)—and I am full-on overwhelmed in the best possible way by all the love oozing my way. And although I have pretty much always had it this good (not to brag, but my people are FUCKING AMAZING), I am humbled and fortified by this outpouring.
Lezz do this shit.