It occurs to me these days that life rarely goes according to plan, and since the last “week’s” update was damn near TWO weeks’ worth of stuff, I’m going to dispense with my plan to update by “week” and start updating updating by “part,” since those can be big or small (tee hee).
So, Part 4 begins with some (not so good) news from Part 3. By the time I got this news, I was 75% of the way through the Part 3 update, so I decided that rather than re-jigger the Part 3 opening updates to include this, I’d add it to the to the TL;DR intro for Part 4, and here we are, so . . .
The most recent big news
It turns out that, contrary to what we originally thoughtâ€”that the cancer was localized to the left breastâ€”it is, in fact, also in a lymph node (at this point, it’s looking like just one, but I’m no longer making declarative announcements, because it turns out that’s a lot like making plans). The MRI (which occurred just a few days before I started chemo) showed a suspicious node just below my left armpit, so during my first chemo appointment, I was told I needed to come back in two days for an ultrasound, and a possible (which turned into a definite) biopsy of the rogue node. That biopsy showed malignancy.
What this means:
- While there will be no change to the chemo/immunotherapy treatment plan at all, this news will change the eventual surgery, because now the surgeon will want to remove lymph nodes as well. (I’m already checking out cool compression sleeves, so I can be ready to rock a fake tattoo sleeve when the time comes.)
- From what I can tell, this moves the staging of my cancer from 2A to 2B.
Staging is determined using three primary factors:
T: The size of the tumor
N: The involvement of nearby lymph nodes
M: Whether or not it has metastasized to distant organs
My cancer was initially clinically staged at 2A, because although the tumor was a decent size (~4 cm), there was no spread to nearby lymph nodes (or so we thought), and no metastasis (or so we THINK . . . see next bullet). Now, the size of my tumor AND the involvement of the naughty node move it into stage 2B, again, with the assumption that it’s just the one node, and the assumption that it hasn’t spread anywhere elseâ€”but in order to determine THAT . . .
- I have now been required to undergo CT and bone scans to check for metastasis to other parts of my bodyâ€”so far, no results yet from those (but by the time I get 75% of the way through THIS update, who knows?).
So here’s what’s been going down since we last talked:
- Monday, 8/22 â€” Weekly blood draw
- Tuesday, 8/23 â€” Second chemo treatment
- Friday, 8/26 â€” Procedurepalooza, Part 2: CT and bone scans
Cast of Characters Jovial Jim and Welcoming Winnieâ€”the other patients I met during chemo round #2 (my elder son has proposed a sitcom called Friends at Chemo; I initially laughed and blew it off, but now I'm starting to think he's onto something). Stinky Sallyâ€”a woman with very bad perfume, whom I encountered in a hospital waiting area. Dr. Cool-and-Calmâ€”my oncologist. Love Tankâ€”my husband.
Monday, bloody Monday
So, when I went in for my #1 chemo treatment, I learned that each week, they’ll need to take a blood draw for labs before the treatment can begin. (This was not necessary for the first treatment, because I’d had labs a few days prior, and since I hadn’t started treatment, it could be assumed that there hadn’t been significant enough changes to my health in the interim as to alter those results.) I was told that I had the choice of coming in the day before treatment each week for a blood draw, or doing the blood draw the day of treatment.
The primary benefit of doing the day-before draw is to save time; because the treatment can’t begin until the labs come back, doing a day-of draw would mean twiddling my thumbs for 1-2 hours, waiting for lab results before getting hooked up with the chemo (and no, I wouldn’t be allowed to leave and go get some pancakes or something during that time).
The primary benefits of doing the day-of draw are:
- To save gas and a middle-of-the-workday dash to the hospital and back (this point is somewhat negligible, since the hospital is only about a 15-minute, mostly-highway drive from my house, which means less than 45 minutes out of my day, and probably only a couple bucks’ worth of gasâ€”or less, if I take my motorcycle (but unlike Love Tank, I AM NOT ready to drive that thing on the highway, so I’d have to take a longer route, although it would be much more funâ€”but I digress), and
- To save myself a needle poke, because for day-of draws, they’re able to use my port to get the blood, but for day-before draws, they go traditional and jam a needle into my arm.
While you’d think that second point alone would be enough to convince my needle-phobic ass to do the day-of draw, I chose the day-before option, mostly because the nurse who discussed it with me was REALLY pushing that as the way to go, promising a quick, “get in, get out” procedure. And so far, she’s true to her word: I arrived about 5 minutes before my 3 p.m. appointment on Monday, and was walking out the door by 3:02. So I suppose I’ll stick with this method going forward, as long as that kinda speedy service stays consistent. And as long as I keep getting THEEEEE most amazing nurse, who has now drawn my blood TWICE, and I BARELY felt anything either time! I may need to marry her. Will keep you posted.
So unlike treatment #1, treatment #2 kicked off (as, I’m given to understand, will all treatments henceforth) with a visit with Dr. Cool-and-Calm. For this visit, he mostly just asked about my symptoms following the first treatment, and talked a little about the results of my labs from the day before.
As far as the symptoms went, I only had a few to report:
- Vague nausea (never bad enough, IMO, to take the prescription pills I’ve been given to combat it)
- Moderate achiness/stiffness in my neck, shoulders, and upper arms (bad enough to guzzle ibuprofen a couple of nights, and to try sleeping with my neck on a heating pad for one of them)
- Mild fatigue (typically following an attempt to do some mundane thingâ€”walking the little one to school, my lunchtime cleaning spree, etc.â€”at my “normal” level of functioning (i.e., walking at my typical fast pace once I ditch the shorty-legged kid at school, shoving big-ass furniture around to clean beneath and behind, etc.) rather than my current slightly-puny level of functioning).
- A weird feeling that I can only describe as “feeling my heartbeat”â€”an occasional experience of . . . not pain, but just . . . being acutely aware of my heart glub-glubbing in my chest, which sensation is typically reserved for those times when that sucker is beating demonstrably faster than usual (like when I’m (a) running after a dog who’s hell-bent on dashing out onto a major street; (b) about to get sideswiped by the Culligan Man on the highway; or (c) getting an eyeful of Love Tank cruising Cool-Rider style down our street as he returns from work on his motorcycle)â€”only in this case, it’s beating at normal speed.
As for my lab results, they raised a couple of areas of mild concern:
- Anemia. “That’s only going to get worse,” Dr. Cool-and-Calm cautioned (and, he mentioned, could be what’s causing the weird heartbeat thing), so per his advice, guess who’s now taking iron supplements (andâ€”TMI WARNINGâ€”experiencing the concomitant black poo)?
- Low potassium. This time, Dr. CaC advised handling that by way of my diet, but I went ahead and got some postassium supplements as well, so I don’t burn out on bananas.
Immediately following my short visit with Dr. CaC, I headed on out to the chair. Unlike last time (when a specific chair was reserved for me because, as a newbie, I needed to be in the line of sight of the nurses’ station), I got to choose which area (of three) and chair I wanted, so I chose a chair by the window, in the area closest to the bathrooms (recalling the ungodly number of times I peed during the first treatment).
I found instant camaraderie with the two other people in the Bathroom Bay. One, an athletic-looking middle-aged man who still had hair (and who was getting some sort of infusion via IV rather than a port) declared jovially, “This is the VIP section!” and the other, a slightly older woman with no hair (who was chatting amiably with the friend (sister? wife?) who sat, knitting, in a chair next to her recliner), called out happily, “Welcome!”
We didn’t talk much after that, but Jovial Jim got a lunchtime visit from his wife, who was equally jovial, and Welcoming Winnie did strike up a bit of conversation with me towards the end of my visit. I can’t remember how the conversation started, but she asked about what medications I was receiving, and warned me that the Taxol would make my hair fall out. From there, we discussed:
- The scalp pain she experienced prior to her hair falling out (I was glad to hear there might be some sort of warning sign for me, because I’ve been getting weekly blowouts lately, and I’m always paranoid that my stylist is going to wind up with a fistful of my hair and freak tf out, so I’ve been waiting for some indication of when I should start warning them in advance).
- How what’s even more difficult than the baldness is the loss of eyebrows and eyelashes (“I mean, they define your whole face,” Winnie astutely pointed out).
- How we’re both choosing to eschew wigs, because they tend to look so . . . “wiggy.” And although more than one person has told me there are some wigs out there that look really good, I think about all the “bad wig” moments in big-budget movies and TV shows, and I figure that even though Love Tank and I make a pretty comfortable living, my comparatively meager wig budget is still likely to have me looking like this:
But I digress.
Sadly, I’ll only see Winnie every three weeks, as she’s on a 21-day chemo cycle (SEVEN HOURS each time, blecch). But she did give me a lead on a local shop with good head coverings (she said the bamboo ones, like the one she had on, are the softest), so by the next time I see her, maybe she and I will be sporting matchies.
At any rate, overall, the second round of chemo was FAST (only three hours this time, since I didn’t get the Keytruda (the immunotherapy drug) this round), far less pee-ful (fewer drugs mean fewer saline flushes in between), and a little less sleepy; I still got the Benadryl, but only napped for about 40 minutes or so on it, as opposed to the HOURS I conked out the first time. I was still a little tired when I got home afterwards, but overall, it didn’t seem to knock me on my ass for THE REST OF THE DAAAAAYYYY, so I was able to whip up dinner that evening (“Really?” my family looked at me, surprised (and, in the case of my elder kid, disappointed, since he’d been hoping we’d order Indian food) as I began browning pork chops) and enjoy it with my sweet little fam.
Procedurepalooza, Part 2: half a day of dye-ing and scanning
On Friday, I arrived at the hospital at 7:30 a.m., ready to be stuffed through some tubes. Although I had experience with MRIs previous to this, I’d never had a CT or bone scan, but I’m not claustrophobic, so I anticipatedâ€”or at least hopedâ€”that they’d be equally satisfying experiences.
I was wrong.
GAH, they were awful. Well, OK, the scans themselves were not too bad, but all the stuff that has to be in your body for them to work would not even be worth the price of admission for an MRI (which, as you may recall, I LOVE).
Upon arrival, I was given contrast dye to drink for the CT scan. It appeared to be a big jug of red wine, but alas, held none of the fun. It tasted like pure ass (a man who sat nearby with his own jug of ersatz hooch to drink pointed out that at least this time it had some flavoring; apparently last time he’d done this, there had been no attempt to make it the least bit palatable), and it didn’t even get me to a state of wanting to kiss everyone (like a few glasses of wine will); instead, it skipped me straight through to the next-morning nausea, because the more of it I tasted at the back of my throat, and the more of it I felt sloshing around in my empty stomach, the more I thought I might hurl.
The last straw was when a (probably kind and compassionate) woman, who’d accompanied a patient to his medical appointment, sat down in the chair next to me (as I deep-breathed and silently pep-talked myself into taking one more, and then another sip of that swill)â€”and her perfume was so strong, and so horrid-smelling that I knew I’d yurp my gut fulla contrast dye straight onto her lap if I didn’t get the hell away from her STAT . . . so the second she and her cloud-o-fumes sat down, I picked up my purse, my jug, and the little styrofoam cup I’d been given along with it, and noped all the way over to the other side of the room. (I spoke in a long-ago blog post about how I’d reached the age of giving no fucks, but in this moment, I hit a new low in fucks to give, because I was legit ready to hurt every single one of an innocent woman’s feelings by telling her she smelled like Satan’s unwashed ass if she dared to call me out on moving away from her (which, I mean, why even would she, since 100% of her focus was probably on the health of the man she’d brought to the doctorâ€”but still, I WAS READY); I wished a mufuggah WOULD.)
The good news, if I have to find some, about this whole scene was that I was provided two breaks from choking down the contrast dye:
- A couple of styrofoam cups in, a handsome young fella in scrubs came and fetched me for the insertion of an IV to inject me full of radioactivity for the bone scan (and I hate to admit it, but yes, the injection of radioactivity into my body was a welcome reprieve from drinking that stuff). I warned him, as I do anyone who’s about to jab me with a needle, that I HATE needles. For the most part, I’m sure it does nothing except make them afraid that I’ll start screaming or kicking or something, but I like to think it makes them try to be a little gentler with the stick of doom. This time, however, he asked (having already determined via a series of earlier questions that I have cancer) if I happened to have a chemo port. When I answered YES, he asked if I’d like him to just use the port to inject the nuclear goo (OK, that’s not what he called it) rather than inserting an IV. As a bonus, he told me the CT scan folks would be able to use the port as well, for the injection of THEIR goo. I was thrilled. He accessed my port, injected a couple of small vials of atomic serum, left the access tube in place for the CT people, and sent me back to the waiting room (where Stinky Sally no longer sat, but I could still smell her perfume).
- A short time later, a young woman with a killer nail polish color came to fetch me for the CT scan. I’d been told, when I was given the jug of Hell Juice, that I’d have about an hour to finish it before the scan, and here I was only 40 minutes in, with a good 12-15 ounces left to drink! I looked at her in panic, thinking she’d start chanting, “Chug! Chug! Chug!” and I’d have to finish it all at once (I glanced at her shoes to see if they were puke proof)â€”but instead, she looked at my jug and said, “You drank plentyâ€”they gave you a LOTâ€”so you’re good.” Then she took what was left in my jug, and my little cup, and tossed them into a nearby trash bin. And at that point, I DID actually want to kiss her. But mostly, I still wanted to throw up, so I didn’t take that chance.
Unfortunately, although the nice CT scan lady had saved me from the torture of the contrast dye, she was also the bearer of bad news: because the CT scan folks were unable to determine whether my port was a “power port” (after my port placement surgery, I was given a card that apparently contained this information, but heck if I had it on me), they could not, in fact, use it to inject their goo. So I had to get a damn IV inserted, anyway, which they used to inject me, during the scan, with what I can only describe as Instant Hot Flash. The nice woman had warned me that I’d start to feel warm, and that it would FEEL like I was peeing myselfâ€”but, she assured me, that would not actually be the case. Turns out she underestimated the feeling of warmth; I hadn’t worried too much about it, I mean, I LOVE Bikram yoga (in fact, this past winter, I bought a membership to Hotworx, because it’s the closest approximation to Bikram that’s available in these parts), so how bad could it be?
OH MY GOD, it was like all my internal organs morphed into the earth’s core, and were incinerating me from the insideâ€”which did NOTHING to help my nausea; my only hope was to keep my mouth shut so the magma churning inside me wouldn’t come glurging out and melt my face. What she OVERestimated was the pee-pee sensation. I felt it, but barely, and it came nowhere close to making me believe I’d tinkled on myself. I guess the good news was that neither sensation lasted longer than about 12 seconds.
The other good news is that I only had to keep the IV in for the duration of the CT scan; both it and the access tube still attached to my port were removed immediately following the scan.
But the BEST thing that happened after the CT scan was that I got to EEEEEEEAT. Before the scan, when I was given the dye to drink, I was told that I could use the restroom, but that I was to have nothing to eat or drink from that point until the CT scan was completed. The bone scan came with no such requirements, so in the hour and change I had “free” following the CT scan and before the bone scan . . . well . . . I’d like to say I went and treated myself to a fancy, four-course meal at a place with at least three dollar signs in its Yelp profile, but (a) it was only 9:30 in the morning, and (b) Mama was HONgry, so in reality I whizzed to the nearest Wendy’s drive thru, ordered a #9 breakfast, and started eating it as soon as it was handed out the window to me, so it was GONE by the time I’d driven the two miles back to the hospital. The silver lining THERE is that it went a long way towards alleviating the nausea I’d been feeling all morning (and as a bonus, shoveling the food so quickly down my gullet helped scrub away the red dye stains I noticed on my lips and tongue when I first got into the car and looked in the rearview).
When I arrived back at the designated waiting room for the bone scan, I still had an hour to kill, so I conked out in my little chair for about 45 minutes. Then the handsome dude who’d injected me with the Area 51 brew came back to get me for the bone scan.
About 20 minutes (and a warm blanket) later, I was out of that tube and (at long last) on my way back home (where I crashed for the rest of the day). I’m told I’ll have results Monday or Tuesday. I’ve been checking my patient portal to see if any results have popped up earlyâ€”and none haveâ€”but I’d like to think that this means my scans will come out clear. It seems like every time I get news before I’m expecting it during this process, it’s bad news. So maybe in this case, “on time” news will be good news. Cross your fingers.
This week's BONUS content: Livin' for the weekends. So the pattern that seems to be emerging, in terms of how I feel with the chemo treatments, goes something like this: Tuesday: Treatment day. Feelin' good, but a little sleepy from the Benadryl. Wednesday: Feeling fine, maybe a little left of center, but not to a noticeable extent (in other words, if I didn't know I was fulla chemo drugs, I could easily blow off the weirdness I feel). Thursday: Feeling a little more pud, but still not too bad. Friday: Feeling noticeably gross now, but can still accomplish what I need to. Saturday: Starting to ride the upswing. Sunday: Swinging up even more. Monday: Feeling easily 97.4% normal, JUST in time for the next treatment. (The thing that makes it challenging to assess how I'm feeling after chemo is that so far, I've been required to undergo additional, unpleasant medical procedures within a couple of days after each treatmentâ€”first with the lymph node biopsy (on a Thursday), and then with the CT and bone scans (on a Friday). And on those days, I end up feeling pretty bad, but I can't help thinking that without the added stress and physical effort required for those procedures, I wouldn't end up crashing so hard on those days of the week. But I digress.) So for the past two weekends, I've actually been able to function relatively normally. The weekend after Treatment #1, Love Tank and I functioned as our "normal" RIDICULOUS selves and drove to Omaha, NE and back (three hours each way) in a single day, because several weeks prior, he'd discovered that a movie theater up there was going to be showing Grease 2 on Sunday, 8/21. And he loved me enough to not only TELL me about it (he could have taken that shit to his grave), but to buy us tickets. So off we went, and it was GLORIOUS. (No, no, not GREASE. Grease TWOOOOO, baby, Reproduction, Cool Rider, and Who's That Guy? all the way! The summer I was 13, I came down with a HORRIBLE case of chicken pox while I was in Texas visiting my grandparents, and was stuck inside for a substantial amount of time. During that time, I watched Grease 2 FOURTEEN times on HBO, and Michael Carrington retains a special chunk of my heart (even though he can't sing for shit). THIS time, however, was my first time seeing it on the big screen, and it was (somehow!) even MORE magical! Love Tank (and a larger-than-life Adrian Zmed sliding down a bowling lane on his knees and belting out high falsetto) is the gift that keeps on givin'.) This past weekend, we eschewed the ridiculous-variety "normal" in favor of some NORMAL-normal: our older son had a friend sleep over, which has become sadly rare as we've been trying to adjust to life as it is now, and prepare for life to come. He's been a real trooper, and hasn't even really asked to have any sleepovers at our house in forever (he used to ask damn near every weekend). But this weekend, he did, and I was feeling pretty good, so I said "Sure!" And being able to give him that little slice of "normal" in the midst of all this made me feel even better.
As always, if you’re still reading, you’re BANANAS, but I can’t thank you enough for staying on this train. I can’t seem to figure out a way to respond directly to each of your comments on this blog (there used to be one, but it doesn’t seem to work for me anymore?), but I see, read, and love ALL of them . . . and you!
(Special shout out to those of youâ€”you know who you are (and yes, there are more than one of you, which I love)â€”who’ve been thoughtful enough to ask if I need edibles, and to let me know you can get me the “good ones.” I will keep you on speed dial.)
14 Replies to “The “little c” chronicles . . . let’s start calling them PARTS instead of Weeks, shall we? â€” Part 4”
Hi sweetie. I’m reading along with you. And still useless, but ready and waiting to be of use if I can be. I do live in Colorado.
I read to the bottom, so that makes meâ€¦ðŸŒðŸŒðŸŒ?
Sounds like you’re in good hands!
â¤ï¸â¤ï¸â¤ï¸ till next weekâ€¦
Sending you all the ðŸ–¤ miss ladyâ€¦ following along makes me relish your sense of humor and prose. Sending you diamoku (Buddhist good vibes). Xo
You’re beyond amazing and insanely strong. So grateful for your candid shares cuz you know I have a million questions. I think of you every. single. day. Keeping you close in my heart!!!! I know you’re SuperChandra, but get some rest!!! Big hugs and love and prayers to you all the way from Texas.
Only YOU could make a crapTASTIC adventure out of a crappy diagnosis. Reading and relishing every episode…you’re a GODDESS. Sending love and virtual hugs…
Bless your heart! Ive been reading your story! Thanks for being vulnerable! Sending love &prayers your way.
For more love/appreciation ofGrease 2, listen to this episode of “How did this get made?” : https://podcasts.apple.com/us/podcast/matinee-monday-grease-2-w-anna-faris/id409287913?i=1000552405493
Thank you for sharing your journey with friends and family. ( I’m in the banana bunch!) Love you and praying for you and your family.
I agree with Linda!! Itâ€™s hard NOT to read the end, though I wish I didnâ€™t have to be reading any of this in the first place. Love & prayers continue for you and your fam! â™¥ï¸
*to the end
Sending love and light brave friend.
You make me laugh and make me cry and l will follow along with you until you have kicked cancers ass!!â¤ï¸
â€¦to the end! Sending you waves of peace and healing! â¤ï¸ðŸ™ðŸ½â¤ï¸ðŸ™ðŸ½â¤ï¸ðŸ™ðŸ½
I am in the â€œbanana clubâ€. Your writing is riveting. I am in for the journey. Again, I wish I had journaled during my c ride. Since I canâ€™t remember a lot after 39 years, I am learning through you. Call me if you need anything. Kiss Nadine for me. With all my love!