So I thought this would be the (or, at the very least, the first appreciable) point in this ride where I’d stop having much to say. The mad whirl through all the kick-off procedures, subsequent procedures, phone calls, doctor visits, and emotional adjustments has slowed significantly, and now I should be settling into a kind of groove where every week would pretty much be the same, right?
Heh. Wrong. But more on that later. First . . .
This week’s news
News #1: Good Lookin’ Innards
The CT and bone scans apparently came out clear!
Clear of cancer metastasis, anyway; turns out I have some cysts here and there (some of which I knew about, some of which are fun new friends), and some “degenerative change” in my feet. But aside from benign internal lumps and old feet, the report showed nothing concerning! And as a bonus, it showed that my “nipples appear symmetric.”
Y’all know how I feel about symmetry, and that I’m a weirdo, so I’ll admit I took a little bit of pride in that.
Also, as I predicted, since there was no horrible news, I did not receive any “early warning” phone calls (which has thus far been the case; each time there’s been bad news, I’ve received a phone call earlier than I was even expecting results, based on the timeline I was given after the procedure). In fact, I didn’t receive any phone calls at all. Still haven’t. What I did receive were imaging reports through my online patient portal (which I may have begun obsessively checking roughly 17 minutes after the CT and bone scans were over) . . . I read them, and they seemed like decent news, but I am a not a doctorâ€”nor do I play one on TVâ€”so I relied A LOT on Google to parse those reports, and thereby found a couple of things that gave me pause:
- Renal cysts. These bad boys are a prime example of why one shouldn’t Google in the midst of a health crisis, because they fit under the category of Things That Are Most Likely Nothing But Then Again Could Take You Down Tomorrow. And the deeper you get down those Google rabbit holes, the faster your head spins.
- A “single tiny focus of marked activity” on one of my ribs during the bone scan. The report stated outright that it was likely “an artifact of radio tracer contamination,” (in other words, a drop of the nuclear goo that leaked onto the OUTSIDE of me during the process of getting it INSIDE me)â€”but also mentioned that it “may represent a focus of osseous metastatic disease.” (Againâ€”Could Be Nothing, Could Be Imminent Doom.)
At this point, I gotta give a shout out to one of my middle school besties (whom we’ll call Dr. Awesome Pants unless she chooses to be otherwise identified), who grew out of her awkward years and into a career as an oncologist (I grew, too, and have a career, too, but somehow I’m still in my awkward phase). Thanks to the magic of the internet, we reconnected over a decade ago, and although we haven’t seen each other since one heady lunch we had when our kids were wee (and one of mine did not yet exist), we’re still connected through Facebook. And when she learned about my news (likely through Facebook, but to be honest, I never asked; coulda been a mutual friend, a prophetic dream, or a mystical semaphore), she contacted me with a bunch of experty questions. Through that conversation, she learned about the (then) upcoming CT and bone scans, and lovingly pestered me thereafter until I had results.
When I finally got them, I mentioned to her that they seemed like good news, but there were those couple of things. She asked me to send her screenshots of the reports so that she could try to reassure me. So I took her up on it, and she DID reassure me that this did, in fact, look like good news!
I expected to have the good news confirmed on Tuesday, during my pre-chemo visit with Dr. Cool-and-Calm, but it turned out he hadn’t received the reports yet. So technically, since my fancy doctor friend is not actually MY fancy doctor, I suppose the good news isn’t officialâ€”but again, typically when there’s bad news, there’s a phone call.
I’ve never been so delighted to feel so ignored.
News #2: Genetic Glory
The OTHER good news in recent days is that my genetic test results came back, andâ€”WOO HOO!â€”NO wonky BRCA gene, Baby!
When I received the report in the mail, the letter lied and said I’d been given the results by phone (which I had not, and still haven’t), but any anger or annoyance I could have mustered up about that little business was instantly swept away by the whoosh of relief I felt.
I’m still not 100% clear on how (or IF) this news may change my surgery options. In the beginning (before any other testing or scanning was done), I was told my choices, after chemo, would be either:
- a lumpectomy with radiation, or
- a mastectomy
. . . and that there wasn’t much difference between them in terms of the chance for recurrence, UNLESS it turned out I had the BRCA gene mutation (in which case a mastectomy would probably be the smarter move). At that point, however, we thought the cancer was ONLY in the breast; since the cancer has now been found in the rogue lymph node (which is becoming enough of a recurring character that perhaps IT needs a name . . . I’m taking suggestions), I’ve now been told that I’ll likely end up having radiation no matter what (so if I was leaning toward the mastectomy in order to avoid radiation, I shouldn’t count on that). So on balance, the positive lymph node and the negative BRCA test may just be a wash. In that case, I guess at this point I’ll just focus on hoping the chemo works as well as possible, and figure out what to carve out or cut off when I get to that bridge.
In the meantime, though, I’m taking great comfort in the fact that I have not unwittingly passed down a mutant bad-boob gene to my children. While it’s true that both of my children are (birth-assigned) boys, the gene could manifest in them as another type of cancerâ€”or as breast cancer, since men can get that, tooâ€”and would put them at higher risk of cancer in general. In addition, the gene could pass through them to their own daughters (or sons). So just knowing I’m NOT the Typhoid Mary (er . . . Breast Cancer Bonnie?) in this situation is a tremendous relief in itself.
Anyway, that’s the news for this week. Now comes the babble . . .
Chemo Treatment #3: More like a (dirty) TRICKment
My third Chemo Tuesday started out with two breakfasts. Under orders to eat before each treatment, I made myself a bowl of oatmeal at home and scarfed it down, not realizing that when Love Tank came downstairs to drive me to my treatment, he was going to say, “I’m hungry. Are you hungry? Do you want to pick up food on the way?”
I mean. When you’re talkin’ to ME, “Do you want to pick up food on the way?” basically qualifies as a rhetorical question.
So I ate a second breakfast on the way, thinking the snacks and lunch I’d packed to bring along were probably going to go uneaten.
My third chemo treatment, however, “hit different,” as the kids say. It started out as usual: a visit with Dr. CaC (the only surprise there beingâ€”as I mentionedâ€”that he hadn’t yet seen my CT and bone scan results), followed by my choice of empty recliners for the duration of treatment.
Again, I chose the area closest to the bathrooms, except this time, there was only one person sitting in the Bathroom Bay. I merrily commented that for a second there, I thought I was going to have the whole section to myselfâ€”but the man sitting there didn’t respond, so I figured he’d probably thought the same thing, and was disappointed by my intrusion upon his solitude. So I shut my flap and sat down, because I’m all about respecting a person’s solitudeâ€”or at least their desire to NOT make small talk with a stranger.
The nurse came over to start getting me hooked up, and mentioned that once the pharmacy delivered the goods, they’d start me on the pre-meds and Benadryl. Soon, another nurse arrived and said, “OK, we’re going to get you started on the Benadryl.”
“Oh,” I said. “I thought the pre-meds came first.”
She replied, “Sometimes we start with the pre-meds, sometimes with the Benadryl.”
And that was fine by me . . . until the guy next to me suddenly struck up a conversation RIIIIIIIIIIIGHT as they hooked me up to the Benadryl.
His story was fascinating: five years ago, he got laid off from his job. Faced with losing his health insurance (let’s take a moment of WTF here to contemplate how ridiculous it is that health care is tied so closely to employment in this country . . . and now back to our program), he decided to get a thorough check under the hood, so he did all the testing he was due for at his ageâ€”including a colonoscopy, whereby he found out he had stage 4 colon cancer.
The cancer had metastasized to his liver, so he underwent resections of both his liver and his colon. When I met him, he was on his fourth round of chemo (the five years since his diagnosis had involved periods of remission, the longest being 1.5 years). “You never really get used to it,” he said. But he did acknowledge how amazing it was for him to be sitting there five years after a diagnosis like that.
I’m sure there were more interesting details to his story, but in the middle of our conversation, the Benadryl started kicking in. As we talked, I found it harder and harder to say words like “remission” and “radiation,” and eventually just had to come clean:
“I’mmmm shorrrrrry; I know my shpeech iz startn ta slurrrrr. I feela Bennndrill kickin’ innn. I mightt fallaschleep onnn ya.”
The last thing I recall clearly is him telling me that he doesn’t let them give him Benadryl prior to treatment. “I hated it,” he said.
I recall thinking, as I drifted off to sleep, that that was a good reminder to self-advocate; which for me means not only SAYING no, but even being aware that I CAN say no in certain situations! Mind you, I got no plans to give up the Benadrylâ€”Mama loves a good napâ€”but honestly, before that point, it wouldn’t have even occurred to me to TRY.
But I digress.
The point is that next thing I knew, I was waking up (having previously been woken up briefly, asked for my birthdate, and informed that I was being started on the Taxol drip) with a DEEP, GNAWING HUNGERâ€”I mean, the cartoon kind, where every sentient being appears before you as a juicy roasted chicken. I sat up, dug into my bag, and ate every bit of the lunch I’d brought (a turkey sandwich, two string cheeses, and a container of watermelon chunks) before polishing off the tin of almonds and the bag of dark chocolate aÃ§aÃ blueberry balls I’d brought for snacks. Then I had nothing left to eat, but I was still hungry, so I chewed my way through half a pack of gum I found in my purse (it was leftover from my last dental appointment, when I realized I’d forgotten to brush my teeth before I left the house (I mean, I brushed that DAY, but I always brush right before heading to the appointment), and so stopped at CVS for a pack of minty freshness to chew en route).
And that was only the beginning. When, Love Tank came to pick me up and take me home, he asked if I was hungry and YES, I WAS. So I ate another lunch when I got home.
Then I ate dinner.
Then I went to bed, but woke up starving at around 11 p.m., so I ate a “midnight snack.”
Then I lay back down to try and sleep . . . and immediately my esophagus was ablaze with horrible heartburn (and I’ve never experienced heartburn IN LIFE outside of being super pregnant, therefore we don’t stock any sort of heartburn relief in this house). So there wasn’t much sleep to be had after the snack, but I dutifully got up to start my day at 6 a.m. on Wednesday . . .
. . . and the fun continued! I was hungry, hungry, hungryâ€”but everything I ate made the heartburn worse and, as a bonus, made me feel like puking.
This was not how Wednesdays were supposed to go! Wednesdays were supposed to be primarily OK, with maybe a little weirdness (like, mild achiness or a teench of nausea that could be willed away by finding something else to focus on). Not like this gastrointestinal freak show!
Ultimately, I stopped trying to eat anything, took a couple of naps during the day, and managed to will my way to school pick-up time for the littler dude. But once he was safely home with his afternoon snack, I gave up on the rest of the day. Crawled into bed, canceled our weekly Wednesday dinner with my mom (which phone call resulted in a lecture from herâ€”once I’d described the WWE-level smackdown happening within me between the insatiable hunger and the heartburn/nausea double-team that resulted anytime I tried to eat anythingâ€”about how I didn’t need to be eating too much anyway, because I don’t want to put on weight . . . moms, amirite?), and passed TF out.
When I woke up later that evening, the hits kept coming with another double-team disaster: a splitting headache (that laughed in the face of ibuprofen) coupled with deep-deep-DEEEEP muscle aches in my neck and shoulders.
Now basically pinned to the mat by this whole gang of WWE characters (because the heartburn and the nausea didn’t leave the ring when the headache and muscle aches arrived, oh, no, they did not), I was in no way able to get comfortable enough to fall back asleep, so I lay there for two hours, trying to deep breathe my way through it (while my kids periodically came into the room to show me stuff or ask what I was doing; eventually I became unable to maintain any semblance of a brave face, and so started responding (in a whisper, and without even opening my eyes), “Just trying not to puke.”)
They left me alone after that.
(The rule in our house, as it applies to our dogs, is that whoever (a) witnesses the dog puking, or (b) first discovers the pool of puke cleans it up, so I’m pretty sure my children didn’t want any part of seeing me puke (which, FTR, I never did), for fear the rule extended to me, too. Because unlike the dogs, who can’t rat them out when they pretend they didn’t even NOTICE the steaming pool of dog urp smack dab in the middle of the living room carpet, I’m a far more reliable witness.)
Thursday morning, the head and muscle aches were gone, but the gastro issues were still here to play. I made it halfway through the day at work (largely thanks to a pack of peppermint gum I received as part of a glorious care package from a friend I’ve known since first grade; I’m not typically a gum person, but despite having brushed my teeth, and having had nothing to eat or drink aside from little sips of water, I had a HORRIBLE taste in my mouthâ€”so I plucked the pack from the pile of snacks on the kitchen island, and popped a piece in . . . and lo and behold, the nausea calmed TF down a little)â€”but eventually I gave up, made my apologies to my team, and crawled back into bed until it was time to pick up the little dude from school.
Thursday evening, when I felt the Ache Twins coming back to the party, I nearly cried; but the good news was that by that time, the heartburn was gone, and the nausea (thanks to the fact that I’d finally broken into the prescription nausea meds I’d been given for home use, and they were finally starting to kick in) was down to a dull roar.
Friday, the clouds finally began to break. I managed to eat some things (a bowl of oatmeal for breakfast, a bowl of white rice for lunch) with no dire repercussions, and so started weaning myself off the nausea meds (because while I appreciated them when I needed them, they made me BURRRRRRRRRP like a sweaty drunk guy with three-day-old stubble; I was frequently emitting lip-rippling blasts like Predator with a bullhorn). In addition, I actually managed to accomplish some things at work for the first time since Monday. (My arrangement with my employer was to have Tuesdays off for treatment, and then possibly Fridays off, depending on how I felt, because up to this point, Fridays had been my “worst” days. But no previous Friday had ever brought anything near the misery I felt on Wednesday and Thursday of last week, and since that misery forced me to bail on work early both days, I went ahead and worked on Friday morning.)
My kids had a half day of school that day, and once they were both home (one by bus, one by mom), I took them out to pick up their lunch. Then I took a napâ€”more by choice than by absolute necessityâ€”and as I drifted off, I recalled how a friend of mine once described the day after a 54-hour migraine:
In that moment, now that the abject horror of the past two days was starting to lift, I felt a soul-deep understanding of that feeling, that complete and abiding love for all the light-filled beings in the world once you come back into it from the darkened basement hovel in which you’ve been living for a couple of days. And that kind of day-after sunshine ain’t a bad antidote to the dark.
By the long weekend, although I wasn’t feeling 100%, I managed to make it to a movie (The Invitation), to a friend’s backyard for food and a firepit (most hilarious part: a “drum circle” consisting of my two childrenâ€”and, at one point, my friend’s husbandâ€”channeling Tito Puente with plastic buckets), and also made it out for a motorcycle ride to try out a new Cuban place with Love Tank (my litmus test is always the Cuban sandwich, and this one was created according to spec (roast pork, ham, mustard, Swiss cheese, and dill picklesâ€”that’s it!â€”no fancy aioli or pickle relish, and ya gotta PRESS it; don’t put it on some artisan French roll, dammit), but the cheese left a little bit to be desired; it was like the Velveeta version of Swiss).
Chemo Tuesday #4 Begins
So as I wrap this up, I’m back in the chair for treatment #4, a little terrified of what’s to come. On the bright side, I guess I now know I can survive whatever hell comes (I mean, not that I WANT to, but I can). And if nothing else, this past week was a lesson in giving myself permission to say NO when I needed to (or hell, just WANTED to, because whatâ€”someone’s going to argue with the bullhorn-burping cancer chick?). Oddly, though, I’m discovering that while I’m embracing the power to say NO to whatever the flupp I want, I also feel like there are more occasions when I want to say YES, because of that niggling need to do all the things I feel up to doing (even things that seem small and seemingly insignificant, like going to Target with Love Tank to check out the Halloween stuff)! It’s a weird place to be, but I’m rolling with it.
And thank you, as always, for rolling alongside.
4 Replies to “The “little c” chroniclesâ€”Part 5: The times, they are a-changin’”
Iâ€™m focusing on the clear scans and no BRCA â€” ðŸ˜ƒ
Howard? Howard the Rogue Lymph Node?
You continue to amaze me.
You are a beautiful, amazing human. Thinking of you all the time and sending love.