Keeping Abreast: 2, 3, Fiancé!

Welcome back to another installment of Keeping Abreast! Let’s jump right back into it, shall we?

First things first — Happy Pinktober! October is Breast Cancer Awareness month. 1 in 8 people (with breast tissue) in the US will be diagnosed with breast cancer in their lifetime. If you don’t do regular breast exams, now is a great time to start.

Additionally, all donations to the Breast Cancer Research Foundation are currently being matched, so donating there is a great way to make a difference.

(Beware of “pinkwashing” — companies that offer pink merchandise with no clear indication of where the proceeds are going. The BCRF has a list of corporate partners available here, so you can rest assured that your purchase will be making an impact.)

You can also look in your area for local support groups that would love your donation! For example, I’m a member of BAYS — Bay Area Young Survivors — which is a 501(c)(3) nonprofit organization, and they routinely put on support meetings, events, and provide Chemo Care Packages to members, all of which are funded by generous donors. They recently funded a Memorial Garden in Golden Gate Park. Their support has been invaluable to me throughout this journey, and I am eternally grateful for their existence.

Anyway! My second round of infusions was scheduled for April 21st.

I arrived bright and early, as I was scheduled for port labs before meeting with my oncologist and then heading off to the infusion. “Port labs” meant that instead of waiting around for the regular lab phlebotomists to take blood from my arm, I was scheduled for an appointment with a nurse who is trained to be able to use my fancy new port to draw blood. It takes a little bit longer, as they have to open up a special port-prep kit, but there’s no guesswork when it comes to finding a vein — they just pop the needle right into my port. They flush the port using saline, and then they take a couple tubes of blood. Once that’s done, they flush it again, and then they put a cap on the end of the catheter and tape it to my chest so it doesn’t get dislodged in the next hour or so before my infusion.

My oncologist was actually on vacation for this infusion, so I was scheduled with someone else! But she was lovely and very knowledgeable; she had done a thorough overview of my chart, so I felt safe in her hands. She performed a perfunctory examination of the lump and measured it (no change), then she signed off on my bloodwork (as in, my levels were fine and the infusion was good to proceed), and then I headed off to the ITA (infusion treatment area).

The infusion went smoothly, and just like the first time, I had no reactions to any of my medications.

We also placed another duck.

Having my infusions on Mondays made it quite easy for me to keep track of my symptoms. Similarly to infusion #1, I started out with several days of constipation. (Pro-tip: Senokot laxative gummies are amazing.) However, just like round 1, that eventually gave way to several days of diarrhea. I had metal-mouth and dry-mouth this time as well. Luckily, that all wrapped up by day 10, which would prove to be a constant for the rest of my infusions.

That first weekend was when the bone pain hit. To briefly recap my last post, I’m sent home every infusion with a Neulasta auto-injector, which is attached to the back of my arm and goes off 24 hours after placement and injects for 3 hours. It gets my bones producing marrow and fresh white blood cells to hopefully replace what the chemo has decimated and then help fight off any potential infections. But boy, it sure does hurt. It takes all of my regular chronic pain and ramps it up to 11. This tends to manifest the worst in my shoulders, neck, and jaw — the places where I already carry the most tension, due to years of sitting at the computer, and TMJ pain. My usual dosage of 4x Advil didn’t touch it at all. Luckily, it only lasts a few days.

This round I wound up getting a bit of hand-foot syndrome! This is not to be confused with hand/foot/mouth disease — this is a chemo-inflicted reaction. It usually manifests in burn-like, raised areas on the palms and soles of feet. For some reason, mine decided to limit itself specifically to the SIDES of my hands.

Little did I know this was just the beginning of my hand issues…

I was washing my hands early one morning and went to dry them and I was like, hey, why does this hurt?? It pretty much looked exactly like a burn, like I’d laid the sides of my hand on the stovetop. (Dear reader… this was not something I had done. lol.) Also, the next day, some spots on my feet began to hurt similarly (but no visual redness that I could see). So I emailed my nursing team and sent off some photos and they were like, yep, that’s probably HFS. My oncologist would go on to say he’d never quite seen it contain itself to the sides of hands, so I was glad to be keeping things interesting, at least.

It did wind up peeling (just like a burn) and the redness went way down by the end of the three week cycle, so I was hopeful that it would clear up completely. What strange skin side effects will rear their ugly head next round? It’s like symptom roulette!

Infusion #3 on May 12th started off similarly. I had my port labs done, and then I headed back to the other building to meet with my oncologist.

While I was waiting, the nurse I interact with the most popped her head in to the exam room. I mostly talk to her via MyHealth message— “hey, my hands are being weird again!” — and the very occasional phone call. But she said, “I saw you on the schedule and I just wanted to say hi! I was telling [my oncologist] that I really enjoy talking to you, that no matter what weird side effects you’ve got going on, you’re always so upbeat and positive.” So that was really sweet of her to make a point to say, and something I immensely appreciated.

Anyway, my oncologist came in shortly after, freshly back from his vacation, and the first order of business was lump-finding. And what did he find? He found some really, really great news. Here are the details, straight from my after-visit summary.

31MAR2025 [first infusion]: In the IMF fold 5 o’clock, 5 cmfn there is 33x26 mm mobile mass. 21APR2025 [second infusion]: In the IMF fold 5 o’clock, 5 cmfn there is 33x26 mm mobile mass. 12MAY2025 [third infusion]: In the IMF fold 5 o’clock, 5 cmfn there is 24x16 mm mobile mass. Harder to find compared to previous.

Well, would you look at that!

My oncologist measured with calipers each time, so there’s no 3rd dimension, no depth measurement — but based on those measurements, that’s a 44% reduction in size.

MY TUMOR HAD SHRUNK BY ALMOST HALF.

THAT IS INCREDIBLE.

Actually, the exact words out of his mouth were, “That is awesome progress.”

I have to admit, I’d been a little nervous about being on a clinical trial. It’s the SCARLET trial — I won’t recap here, but if you want to look up the nitty-gritty details, just google that — but the gist of it is that I receive treatment every three weeks instead of weekly, and I don’t get the fourth drug that’s usually given to patients with triple-negative breast cancer, AC chemo — AC is a combination of two chemotherapy medicines: Doxorubicin (Adriamycin) and Cyclophosphamide (Cytoxan). (Doxorubicin is affectionally known as “the red devil” and is apparently one hell of a ride.)

Anyway, the aim of the study, in layman’s terms, is to see if the traditional standard of care is doing too much. They want to see if they can achieve the same outcome with a more lax schedule and fewer drugs, hopefully resulting in an easier time for the patient.

But like I said, this has been making me a little nervous. What if it doesn’t work? What if I do need chemo weekly? What if I do need the red devil? What am I to do if I don’t start seeing progress soon? Do I drop the study?? (I am, of course, free to opt out at any time.)

Well, you know what they say — don’t worry twice. After only two infusions, my tumor had shrank significantly, and it was impossible to overstate how over the moon I was about it. It was an incredible relief to have concrete evidence that the treatment was working.

Obviously, the end goal after six treatments is for it to be completely gone/undetectable, and then when the surgeon goes in, all she has to do is clean up a dead cell bed (and the scout marker that was placed during the biopsy). But even if there is something left at the time of surgery, if she gets it all with good margins, I can still achieve a PCR (pathological complete response).

I headed over to the ITA, positively glowing from the news.

My amazing friend Emily joined me for my infusion. (You’re only allowed one guest at a time so we sent my dad to go stroll around the mall for a while.) We had a great time — I learned how to crochet a little bit, talked about perimenopause, and laughed a lot. Having her there meant so much to me. We met in 2018 as coworkers, and she quickly became a dear, dear friend, who has been there for me through every step of this journey. Life is busy, as you know, but we made a point to meet up for lunch before I started chemo, and she showed up with the most amazing care package. (Emily, if you’re reading this, I love you!)

Three days after my infusion, my fiancé Kieran flew into town for two weeks! I’d picked the dates so that they landed perfectly in-between infusions, as I didn’t want us to have to spend any of our time together being bored in the ITA. (Much better to be bored together at home instead.)

My head was always a little floopy for the first few days after the infusion, and I’d arrived at the conclusion that I probably shouldn’t be driving, so my dad was kind enough to chauffer me to the airport to pick up Kieran.

We hadn’t planned too many things for this visit, contrary to his visit in October of 2024 — his first trip to the USA! — where we did All of the Things. The exhaustion had set in at that point, and it didn’t take much activity to get my heart racing and my breath heaving. We honestly spent a lot of time curled up in bed, either watching The Sopranos, reading, or playing our favorite video games.

What we did schedule, though, was an engagement photoshoot! Due to the unknowns of the visa process, we aren’t planning a big wedding. We’re aiming to do a courthouse wedding, with maybe a small garden party afterward with friends and family. (Another contributing factor to the non-wedding is that we won’t be able to have any of his family attend, due to the cost and distance, and it wouldn’t be right to have a big shindig without them.)

I had a friend in high school who went on to become an incredible wedding photographer, and it was always a dream of mine to have him shoot my wedding. But we aren’t having a wedding! So I messaged him to see if he’d be down to do an engagement shoot for us instead, and he happily agreed.

The shoot was scheduled for that first Saturday right around 6pm, aka the “golden hour,” at my city’s rose garden. I ensured we had all the proper commercial photography permits ahead of time, and the city confirmed they didn’t have any events scheduled there that day that would interfere.

I had a wonderful makeup artist come by the house to doll me up. She had been referred by a friend of mine, who had been the drummer of my band in high school. She did a fantastic job with both my makeup and my wig, and I looked amazing, which was quite a feat considering what my body was going through at the time.

Unfortunately, neither me or my photographer realized that it was prom season, and the rose garden was absolutely inundated with teenagers in all their finery, taking a zillion photos before heading off to dinner and a night of dancing! We had to do a lot of waiting for space to free up, but that ended up being more than okay because I was exhausted. Maybe it was my outfit, maybe it was the weather, maybe it was the chemo — okay, it was probably all three — but after every pose, I had to sit my ass down in the grass and take a breather.

My view from the grass.

I made it through the evening without too much fuss, even though I did wind up removing my petticoat at some point and just carried it around. I just had way too many layers on. It all ended up being worth it, though, because the end results were fantastic.

I don’t know that my photographer does a lot of commercial photography anymore; he mentioned that he pretty much only does shoots for friends and family these days. But to not credit him would be remiss — he’s Ryan Tubongbanua of RTPhoto, and he’s phenomenal.

There are a couple of photos where I’m leaning into Kieran, and it brings me back to how exhausted I was at that moment, but I don’t think it shows through in the photos.

This wig ended up being a perfect match to my natural hair color! I never had the length, though. Hilariously, upon viewing the photos, one of my best friends didn’t even realize I was wearing a wig.

We also decided to take a day trip down to Santa Cruz! We’d been there briefly on his previous visit but the bulk of our time in the area was in Monterey, so it was nice to be able to go back and do some more things there. We went on the roller coaster at the Boardwalk, which I had never been on, and of course neither had he — but what I didn’t realize is that it was his first-ever roller coaster! My 6'4" fiancé shrieked with glee the entire time, and what a privilege it was to witness.

The view from our hotel! The Boardwalk is visible at the far left.

We also made a point to drive around the bay to Monterey and re-visit the Italian restaurant we’d gone to in October, and the food was just as delightful this time as it was last time. Our little getaway was late enough in my infusion cycle that my sense of taste had thankfully returned, and I was able to fully enjoy my pasta! The restaurant was also kind enough to seat us — at my request — in a section away from other patrons, as I can’t eat and wear a mask, and was severely immunocompromised at that point.

The restaurant is Il Vecchio — definitely check them out if you’re in the area.

On our way back from Santa Cruz, we stopped at the infamous Mystery Spot, which is a local tourist trap (and rite of passage for folks born and raised in the Bay Area). I’m a bit ashamed to admit that it was my first time there, but better late than never, right?! I walked out of there with entirely too much banana slug merch… and, of course, the iconic bumper sticker.

We had a few more days after that of loafing around and sleeping in, and one more trip to the mall for Cinnabons.

My hands got really, really red again during this cycle, this time spreading further across the backs of my hands and up the fingers. It hurt terribly, and my hands were really dry, which led to a lot of cracking. I had an appointment upcoming with cutaneous oncology (they specialize in skin cancer and cancer-treatment-related skin issues), but in the meanwhile I ended up slathering them with Bag Balm every evening. That helped a bit with the cracking, but it didn’t resolve the issue by any means.

Still, though, the issue remained contained to the topside of my hands.

All too soon it was time for Kieran to return home, leaving both me and my dog bereft. A few days later, I would return to Stanford for infusion #4, which I will chronicle in the next issue of Keeping Abreast, to be posted… eventually, because I’m definitely doing this instead of what I should be doing, which is packing up my entire life to move across the country!

As always, thank you for reading — I hope this is helpful to someone out there, and I’m always happy to answer any questions about any step of the journey. I’m trying very hard to be an open book about everything in the hopes that maybe it will help someone out there feel less alone or less scared if they’re going through something similar. If that’s you— you can do this, and you’re stronger than you know. 🫶