A Little Salty

“The cure for anything is salt water: sweat, tears or the sea.” -Isak Dinesen

I have always loved this quote. For its references and simplicity. But throughout this past year it resonated more, and metaphorically so. It was placed centrally on my manifestation board where I viewed it daily.

To sweat meant to try harder, have grit, push past comfort zones. (Ironically this was very not literal; I didn’t sweat at all during chemo. I learned later that this is in fact a thing.)

To have tears was to experience real grief, and to allow myself to be  supported by others. (And then yes, also literally; my eye watered like a fountain with Bell’s Palsy. This is also a thing).

And, oh, the Sea. My favorite place ever. It’s where I have always come to see the big picture, to be in a state of ease even when there’s turmoil.

I love being salty.

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Speaking of salty, I love my LMNT electrolytes and use them daily on my hikes. No sugar (great for my remission) and they taste delish. Use this link for a free sample pack! http://elementallabs.refr.cc/larahitchcock

Ocean Beach, a 2-mile downhill stroll from my house, and my usual haunt.

Colten was my beach buddy this week. He may attend college in Boston, but his heart is in SF.

I always love a good fog view. San Franciscans fondly call it “Karl,” and it makes any beach walk feel fresh and inspirational. A few of my drawings this year have focused on ocean & fog views.

Breast Cancer: Last Phase of Reconstruction

Before I get started, I have to acknowledge that I’m a little superstitious* (“I’m not superstitious, but I’m a little ‘stitious’,” as Michael says in The Office) When titling this piece, I nearly wrote “Final Surgery: the Exchange.” But I didn’t want to jinx it. I know [from my research and in taking to others] that things don’t always go according to plans with the reconstruction after mastectomy. Some people have a number of surgeries, either because of implant challenges or because of needed revisions. It felt like calling this the “final” surgery was tempting fate. So I changed it to “last phase of reconstruction” to avoid that feeling, however ridiculous. I have definitely become more ‘stitious this year.

As I’ve mentioned before, there are so many different pathways people take in recovering from breast cancer. “If you’ve seen one breast cancer, you’ve seen one breast cancer,” I’ve heard many times. Each case, stage, and grade has specific protocols.

In my case, I had neo-adjuvant chemo (neo referring to before surgery, adjuvant meaning therapy “to help” shrink tumors and suppress formation). Then a mastectomy in March. At that time, a tissue expander was inserted, with the intention of exchanging it later for an implant.

Some people are able to go “straight to implant” at the time of mastectomy. My plastic surgeon preferred to wait, allowing the body the best chance of healing and recovery, and the least chance of complications with the implant.

So I would have the tissue expander in place for anywhere from 3-12 months. If I had needed radiation or more chemo after surgery, it would have been the longer end of that time frame. But because of my pCR (“pathological complete response”) to chemotherapy (determined via labs) I was able to be in the short end of the timeframe and schedule the “exchange” surgery for 3 months post-mastectomy.

Note: seeing that “test result” of my pCR a week after the mastectomy was an out-of-body experience. I had prepared myself for the possibility of needing 3 weeks of daily radiation and 42 more weeks of chemo. I was walking up the hallway stairs when I saw the message notification and had to sit down, my legs were so weak. I reread the summary multiple times. I had my sister read it. Then my surgeon called. “Did you see the results?” she asked. “Yes…,” I said tentatively. “I don’t want to get too excited, but it read like good news?…” She laughed. “Oh yeah, get excited!!! It’s the best possible news.”

The mastectomy took 6-8 weeks to fully recover, but I was able to progressively start doing exercises after about 3-4 weeks. The doctor said the exchange surgery (to exchange the expander for the implant) would be easier than this original surgery, but I prepared mentally for a similar experience. I was so wrong, in the best of ways.

Now less than 2 weeks post-op from the exchange, I’m really mobile. I can easily walk a few miles. I have very little pain. I still need to take it easy (especially the surgical area) and can’t lift that arm completely, but it’s like night and day in comparison to the first procedure. What a pleasant surprise.

Onward!

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* “I’m a little ‘stitious” https://youtu.be/39uoolmtjSA?si=QFz6pEN7RFQ_-vKU

Just 2 weeks post- op, I’m out and about! Attended an intimate showing of ‘Annunciation’ by Lauren Groff (and an author talk back afterwards) performed by the super talented cast of Word for Word at Z Space in San Francisco. Here with Colten, my eldest, who works at Z Space.

I’m High Maintenance And It’s A Good Thing

After having a completed chemo and surgeries, I’m moving into the next phase of my life. Remission. It’s also a strange in-between era because I still have 3 months of Herceptin infusions remaining and 5 years of Aromatase Inhibitors ahead of me.

That said, my life goals have shifted from “manifest pCR” (pathological complete response) to “maintain remission & prevent recurrence.”

When you lay out all the things one should be doing to prevent cancer recurrence (please read that as dripping with sarcasm) it could be a full time job. I’ve chosen to pick and choose the things that make sense to me to maintain my physical, emotional, and mental health.

Other people may make different choices, and that’s cool too. I’m clear that health and wellness for me includes self-care, learning, adventure, risk-taking, and creativity. I’m now “high maintenance” and for the first time in my life that feels like an entirely positive thing.

I’m sure this list will evolve (it already has!) and while it may look like a lot, keep in mind I sort of added new things as I felt ready. It all started with the early waking and journaling- everything else was stacked on top of that. So if you’re thinking about maintaining remission, here’s where I’ve landed.

My Morning Ritual (approx 3 hours)

  • Wake Up (between 5:00-6:00 am, or when my whoop shows a “green recovery”, whichever is first)

  • Make Green Tea (incorporating antioxidants and delaying my first coffee)

  • Get Morning Sunlight (I’m obsessed with good sleep and thus helps our circadian rhythm) for 10-15 minutes. If I’m being honest, though, this is the piece that already feels hardest to maintain and so it may fall off when I return to work.

  • Do Mobility (stretching exercises from Keir at Foghorn Fitness) for 10 minutes

  • Journaling, with coffee (I use the Huberman prompts: 5 gratitudes, today’s highlight, something you regret/resent, less of, more of) for 15 minutes, en français. I love a good double-duty activity and journaling while practicing written French is very satisfying.

  • To Do List & NYT puzzles (this is my reward for journaling- planning my day which clears my head, and then doing connections, mini, and wordle with my sisters)

  • Workout (if at home, 20-30 min of strength or yoga. If working with my trainer, Keir, it’s 50 min of breath work, mobility, and strength. It’s a highlight of my week!- see pic below)

  • Take meds & supplements (a whole category of its own, sadly)

  • Bodywork (Cancer related: lymph scar cording stretches, lymphatic flow exercises, sensory retraining, scar tissue manipulation, wave plate. Bell’s palsy related: warm compress, facial massage, red light therapy). This all takes 30 minutes, at the least.

  • Take a French lesson (one of the silver linings of chemotherapy and subsequently taking a leave of absence from work was adding in an hour of French conversation with my new tutor on Preply. She’s fun and encouraging and it’s keeping my brain engaged, once each week).

My Afternoon Add-Ons:

  • Drink LMNT water (my fave way to stay hydrated and have better recovery scores. I’m a giant fan. See below for a link)

  • Go for a walk (depending upon timing- anywhere from 15 min to 3 hours).

  • Enjoy a “snack” of AG1 drink (A great way to include greens and boost cancer-fighting capabilities)

  • Get Acupuncture (I try to squeeze this in 2-3 times each week to help with nerve stimulation for the Bells Palsy. It will be harder to keep up this frequency when I’m back at work, but thank goodness for San Francisco Community Acupuncture- they’re affordable and also open into the evenings)

Evening Ritual (approx. 2 hours)

  • Creativity time (for me, this is generally early evening hours, and includes drawing or writing. Both help me feel peaceful and productive, so I squeeze them in when i can!)

  • Breast Cancer Support Group (I’m beyond grateful for this group of women and our fabulous facilitator. I remember at the beginning thinking “I don’t need a support group, I have enough friends.” Ha! How wrong I was. Through one of my best friends, I was connected to my Monday night support group, and I haven’t looked back since. We commiserate, we cry, we share, we learn, and we laugh together. It’s so important to be with people who inherently and viscerally understand).

  • Listen to 528 hertz while doing a warm eye compress (a dear friend sent me this audio and I love it; I listen for 10 min with an eye mask to help my post chemo eyesight and also my Bell’s Palsy)

  • Take rx & supplements (it’s so fun I do it twice each day)

  • Skin care (just my regular pre-cancer routine, but I now consciously use the time to add in more facial massage to stimulate the muscles on the side affected by Bell’s palsy)

  • Lymphatic Flow exercises (once you’ve had cancer in your lymph nodes, you obsess about them being able to clear toxins)

  • Read in Bed (I have been working with a phenomenal health coach from Zero Breast Cancer, and she’s helped me identify many of these routines. Especially getting to bed by 9:15. I’m not even ashamed to say I love a 5:30 dinner reservation and I’m a pumpkin by 8:30 pm)

There’s nothing I want more than to maintain remission… so most of this feels like something I get to do and I choose for myself. These things fuel me and bring me joy through self-care, learning, and creativity. And yes, it might be high maintenance… and that’s empowering.

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Resources mentioned:

LMNT: Use this link for a free Sample Pack of electrolytes http://elementallabs.refr.cc/larahitchcock

Whoop: Get a free trial when you join with my link: https://try.whoop.com/larahitchcock

Working out with my trainer and coach. He’s helped me not only with regaining my physical strength, but also my mental toughness and wellness approach throughout the cancer journey. Photo: Keir Beadling & Foghorn Fitness.

“The Banana is Ripe”

I’ve always been a wear-my-heart on-my-sleeve sort of person. An extrovert. I don’t think I’ve ever been accused of holding back on what I thought or how I felt. I love talking with people, and I’m at times quite animated. (Cue husband joking about how soft-spoken and quiet I am)

But that changed this year. Having cancer feels like something you don’t go around talking about. The same goes for Bell’s Palsy. In fact, I initially wrestled with versions of shame or embarrassment as I wondered “what might I have done that contributed to this?”

You also refrain from talking about cancer because want to save your conversation partner from the sheer awkwardness of learning about your diagnosis and not knowing what to say. (Sure I might have cancer, but this unsuspecting friend now has to respond to me having cancer!)

All that to say I decided early on in my diagnosis to focus squarely on my “I am where I am” mantra and only shared about my cancer (and similarly, my Bell’s palsy, more recently) if and as needed. I wasn’t hiding it, but I was definitely not broadcasting it either.

But then I was surprised to wake up a few days ago, ready to share my journey. As in, it was 4:30 am and I had lots more writing thoughts in my head and the desire to put them out into the world! Now! Quickly! (I felt like “the moment has arrived. The banana is ripe.” by David Shrigley. See below for reference)*

Up until that moment, I had been writing more privately, publishing blogs only for myself to see or to share with a particular person who had asked about an aspect of breast cancer. That was fine, I was just being helpful. But It felt super scary to actually publish or share more broadly.

But I’m headed back to work in two weeks, it made sense to close one chapter as I opened the next. Goodbye to Patient Lara, and Hello to Work Lara. (I can hear my family now. They joke that their favorite version is “Vacation Lara.” That gal is fun, I’ll admit)

And so I moved forward with sharing. I posted something on instagram. To my surprise, over the next few days, I received tons of messages from people who had a family member dealing with cancer, or were in the middle of making tough cancer-related decisions, .or had experienced Bell’s Palsy…. And on and on. We all have stuff we carry, and some eras are harder than others. Knowing your experience can be helpful to someone else’s journey is such a gift.

And the unexpected bonus? Once you put it out there, by choice, you are liberated. And a ripe banana is so sweet.

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* a friend & colleague recently sent me something from Shrig Shop, and I’m obsessed with David Shrigley’s art. I’ll do a separate post on what she sent (it had a big impact!) but in the meantime this piece is exactly how I felt when waking up that day- “the moment has arrived. The banana is ripe.” https://shrigshop.com/collections/david-shrigley-cards/products/david-shrigley-postcard-the-moment-has-arrived-banana

This art by David Shrigley (of Shrig Shop) speaks to me. As does a lot of his work. Check it out, linked above.

By All Means Move At A Glacial Pace

I just rewatched The Devil Wears Prada the other night, introducing my teens to critical early 2000’s pop culture.

in doing so, I was reminded of one of my two favorite quotes** from the movie. “by all means move at a glacial pace,” snarks Meryl Streep as the character of Miranda Priestley*. “You know how that thrills me.”

That’s what Bells Palsy feels like. A sloth. A snail. A Glacier.

Progress is so slow that you often wonder if you are fooling yourself. (Is my smile better today? Or do I just want it to be better today?) You start neurotically asking your husband and sons to look at your lips or your eyebrows or your cheek, too confirm or deny progress.

Something that has made me feel better (and feel seen) is listening to the audiobook by Sarah Ruhl. She documents her journey with Bell’s Palsy over the course of 10 years of her life, in her book Smile: the Story of a Face***. I highly recommend for anyone experiencing Bell’s Palsy. Her dry humor sheds light on the idiosyncratic nature of this affliction.

Thank goodness for humor and for being seen.

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Favorite quote from TDWP *https://youtu.be/GMTU-LUESgA?si=9ekvebSHTbmLtVsi

Other favorite quote from TDWP **https://www.facebook.com/TheWorldOfMirandaPriestly/videos/1825706234332002/?fs=e&s=TIeQ9V&mibextid=wwXIfr&fs=e

*** Smile by Sarah Ruhl https://share.libbyapp.com/title/6056140

A photo from a few days ago, once again a neutral smile for the camera. It was a little harder at that moment- wind and cold can exacerbate the tightness on the unaffected side and the immobility on the affected side. It’s felt a little glacial this day!

I’m Going Through An Awkward Phase

Sometimes you just have to not take yourself seriously.

I have been thinking about my adolescent years and how every now and then I hit an awkward phase.

That’s me again, now. But at 51. And maybe “awkward” is just that necessary step on the path back to normal, good, or great.

My hair is growing out after chemo. It’s just longer than my ears on the side but won’t stay tucked. And there’s a giant middle section that is shockingly white. Like, Cruella Deville white. And I can only keep it back with headbands or tiny barrettes, like a stylish toddler.

My face is partially paralyzed from Bells Palsy. I look like The Joker when I laugh. And I have to wear a protective single goggle when I’m in the wind/outdoors. But at least now at week 10 I can function normally again with eating, speaking, and drinking. There was a very funny stage around week 4 when I was used to the Bell’s Palsy but still struggling to pronounce certain letters. My family was driving to Palm Springs and singing to a great playlist. Free Fallin’ by Tom Petty came on- and F’s were the hardest letter to say!- so we all belted it out, sans F’s.

And I still have a port in my chest. I joke that I’m part Cyborg. (The port stays until I finish my final Herceptin infusion in October). I honestly don’t even think about it anymore but remember a time that this felt devastating to have in my chest. But this port has make it possible to get chemo and labs whenever needed without decimating my veins/arm.

Maybe after you accept the Awkward, it’s not so bad. Because it’s also Progress.

Awkward = Progress. Short white hair, half-wrinkled forehead, and protective eye goggle. But I’m out for a long walk, not even 2 weeks after surgery, and I can at least give a smirk. Woot woot!

Bells Palsy Update: Week 10

Before I get started, did you know that 1 in 60 people will experience Bell’s Palsy sometime in their life? That’s much more prevalent than I would have expected. It’s believed to be triggered by inflammation to the facial nerve, brought on by stress, fatigue, being immunocompromised, or by a virus.

I had what is considered a “dense” case meaning it was fully or nearly-fully paralyzed at diagnosis.

I’ve done very regular acupuncture (2-3 times per week, starting at week 2), daily red light therapy (starting at week 3), and warm compresses (mostly in the first few weeks but also anytime my face feels especially cold or tight). After the nerve started firing more, I was able to add in some facial exercises (to “practice” regular movements) which I do daily as well.

So if you or someone you know is experiencing Bell’s Palsy, here’s my update as of 10 weeks in:

Overall: At rest or in normal conversation, my face is nearly normal. If you study it closely you’ll see differences and that there’s a slight pull to my left [unaffected] side. However, it’s still very obvious when I smile wide or laugh. And for some reason in photos, it looks awful. I can look at my phone pre-selfie and arrange my face to look nearly normal with a small smile, but the photo always comes out with my face really distorted. But emotionally, I feel 1000% better about my progress to date. I feel a little more like myself each week.

Brow/Forehead: it still looks like I had Botox on one side only (the affected side). When this started, I couldn’t lift my right brow at all. Now, the inner part of the right brow lifts when my left brow lifts. And I can crinkle part of my right forehead. Who knew that I’d WANT to see forehead wrinkles?

Nose: I can now breathe out of my right [affected side] nostril. That was not the case when this first started! I try very hard to nose-breath only so I’m grateful to have this function [mostly] back to normal.

Eye: I can close my eye 99% but can’t squeeze it shut yet. During the daytime it’s getting so much better- I can see clearly now most of the time, which is a significant reduction in frustration. At night I still help it stay closed by covering my eye with a square of glad press & seal (yes, it’s quite the look!) and my sleep mask. The bottom lid is just starting to be able to tighten, so I’m paying attention to this progress as it will help with my smile as well. Baby steps!

Cheek: Ahhh, Cheek, you poor thing. This is probably the last area to regain feeling. Being able to squint helps raise it when I attempt to smile, but I have to focus on it- it’s not natural yet.

Mouth: it’s funny, there’s been so much improvement here but yet so much more to go. I can see movement now when I say “eeeee” and my lips can pucker more when I say “oooooh.” I now can eat fine, drink without dribbling, and use a straw. (Whenever I share this, I feel like Wesley* from The Princess Bride when the giant says, “You just shook your head! Doesn’t that make you happy?”)

If I had any advice for someone just beginning the Bells Palsy journey, it would be to measure your progress in weeks or months, not days. Expecting daily progress is a recipe for frustration. Like any diagnosis, it’s hardest at the beginning. And don’t hibernate- while it’s hard to feel comfortable (and not self-conscious) around others, it’s neurologically important to interact with friends and family- it helps your brain make the connections needed to heal.

*https://clip.cafe/the-princess-bride-1987/you-just-shook-head/

A photo from this week. I might be “brave” enough to post a neutral picture like this, but I’m not yet ready to share any with other expressions. I think when I’m closer to fully healed I’ll feel more ready- when I’m not currently experiencing it.

Breast Cancer: the Backstory

It all started about ten months ago.

On Monday September 9, 2024, I got the call. “It’s cancer,” she said. “Are you somewhere you can sit down so we can discuss what this means for you?”

But let’s back up a few weeks. It was mid-August, and I had just said goodbye to my college sophomore, Colten, who was moving back to Boston for the year. My husband, Matt, was helping him. My high school sophomore, Oliver, was out with friends. While taking a shower, I noticed a small lump in my left breast. “That’s weird,” I thought. There was not a matching lump on the right. Thinking I was certainly overreacting, I messaged my obgyn just in case. I had a clear mammogram at the end of January, so I wasn’t too concerned. I didn’t even tell Matt when we spoke- it seemed unnecessary.

That was Friday, and by Monday morning my doctor’s office had called to book an appointment. A few days later I was seen. The doctor agreed that she felt something, but that it was quite small. “How did you even notice this?” she asked. I [delightedly!] told her about my new favorite body wash from my trip to France- Nuxe, which is very silky (10/10, highly recommend)- and that I hadn’t even been doing a self exam, just washing as usual when I slipped over the bump. She booked me for an ultrasound and possible biopsy, “just in case.”

I still felt pretty sure it wasn’t anything, but I told Matt. We agreed it was good to do the biopsy just to know for sure that everything was ok.

The appointment started with a mammogram. The tech returned, saying we needed more views- just what you want to hear after your breast has already been smooshed a few times... In my gut, I think this is when I knew- this wasn’t a good sign.

The tech then escorted me to the biopsy room. The ultrasound tech began to explore the area. When he moved over to my armpit, I knew again, at a deeper level, that this was a bad sign. I tried to breath slowly and stay calm.

The doctor came in after a few minutes to tell me they would move forward with a biopsy next- and did I want to do it now or book a separate time? By this point, I was shaking convulsively and realized I wasn’t really hearing what he was saying. I asked him if I could have a few minutes and called my mom. It was September 4th, her birthday. I quickly explained my situation. My mom is an RN and a genetic counselor, having worked at a cancer hospital for years. She agreed it made sense to do the biopsy right then and even spoke to my doctor with me to ask some questions. We biopsied two areas; my left breast and my left armpit (lymph nodes). This was a Wednesday. I would hear back within a week. Agonizing.

On Monday September 9, 2024, I got the call. And I knew.

That call was a deluge of information. Matt and I cried. I called my mom and cried. I called my sisters and cried.

Triple positive breast cancer, stage 2. Agressive. But very treatable.

And then I pulled myself together and jumped on the rest of my work calls for the day.

Mid-week, after I felt I could do so without crying, I texted & talked with my closest friends. They were each immediately there for me in ways that made me cry the hardest; it felt like a heavy load to share and they immediately helped carry it.

In the following weeks, I would make great use of my project management skills, my relationship building expertise, and my advocacy experience. Navigating cancer healthcare is a doozy. I got very good at it.

I would rely heavily on humor, sarcasm, and sheer will to power through each day. Keeping yourself from falling apart and those you love from crumbling under this new weight feels crucial.

I would come to have a new appreciation for what anxiety is and the havoc it can wreak. Every day I would audibly gasp multiple times as I remembered, again and again, that I had cancer. It was the most jarring thought I’ve ever had, each time.

But after about three weeks, I started to be able to move forward. I’d never fully get used to the idea of having cancer (what?!? No. That is so off-brand for me) but I understood that it didn’t matter. It is what it is. I am where I am.

The next weeks and months are now a blur, looking back. There was genetic testing, more biopsies (two more spots were found- changing my plan from a lumpectomy to a mastectomy, something I grieved for a long time). All sorts of blood tests, CT scan, and an MRI biopsy (0/10, do not recommend). Then chemotherapy (6 hours of infusions each time) from October through January. A mastectomy in March. And then final reconstructive surgery at the end of June. (Oh and for fun, sprinkle in a case of Bells Palsy at the end of April, which is still slowly resolving now in early July).

So it’s been a lot. And the journey continues. I’m cancer free (biggest yay ever! I had what’s called a complete response, which also yields better survival outcomes & reduced risk of recurrence later) as of March, and to stay in remission I’ll keep getting infusions every 3 weeks into October 2025 to complete a year of Herceptin (a chemo-like medicine that targets the HER2 receptors from my triple positive breast cancer, and keeps it from recurring). I’ll also soon be starting aromatase inhibitors which will target the hormone positive (ER, PR) factors of my cancer, again protecting against recurrence. I’m not looking forward to that phase (it will be 5 years long!) but I’ve really learned to cross each bridge as I come to it.

Cancer has changed my life, no doubt about it. Lots of negatives and challenges. But to be honest, I look back on the last ten months and I’m grateful for everything I’ve learned and who I’m becoming and most of all- my dear friends and family who I’ve grown closer to through it all.

August 2024- the weekend before my diagnosis, blissfully unaware, with my dear friends Kim, Karima, Moira, and Peggy.

September 2024- my sweet sister Melissa dropped everything to be with me at my first oncology appointments. It was a super scary time and her humor and flexibility and knowledge of the medical landscape helped me stay calm and focused.

March 2025- post-chemo and just before my first surgery. Whether she’s in SF or we’re texting from afar, Michelle’s humor and love and dear friendship brightens my days, daily.

March 2025- my sweet sister Kristen flew out to be with me for my surgery. What a phenomenal support she’s been this year and Best Nurse Ever.

March 2025- My husband, Matt. My rock. All his best qualities have been put to good use this year- his humor, his caring, his patience, his grit.

March 2025- my 16 year old, Oliver. This kid has experienced my cancer as the backdrop of his sophomore year in high school, and has shown nothing but compassion and empathy. What a champ.

June 2025- the weekend before my final reconstructive surgery, again with my college friends. So grateful for Kendra, Peggy & Moira- these women I’ve now known and loved for 33 years! And love that they put on a “serious face” in solidarity with my Bell’s palsy (I can’t really smile, currently).

July 2025- Colten & Oliver have been a huge source of humor for me as I recover from both my last surgery and Bell’s Palsy. They feed off each other, seeing who can make me laugh harder. Such joy.

Bell’s Palsy: Not As Much Fun As It Sounds

It happened the day I thought I had my life together.

I had completed my new, post-cancer morning & evening self-care routines- three hours’ worth of yoga, strength, breath work, journaling, and more- and was so excited to move forward with my clean slate. “Look at me,” I remember thinking. “I’m on the upswing, feeling good, cancer-free, and will be returning to work in two weeks!” Famous last thoughts.

That evening, while laying on the couch and watching a movie with my husband and my son, I became aware of the fact that I couldn’t blink my right eye, and that it was watering like crazy. I stood up and went to a mirror- and saw that not only did my right eye not close, but the right side of my mouth was drooping and could not smile or move. “You’ve GOT to be kidding me,” I thought.

And then it dawned on us that I was possibly having a stroke. I called our advice nurse and jumped in the car to go to the ER.

It wasn’t a stroke. That was the good news. But Bell’s palsy is a facial paralysis of idiopathic nature. Meaning, they don’t know what brings it on. But it’s often caused by stress, fatigue, being immunocompromised, or by a virus. In my case, probably some combination of most or all of those as my body recuperated from chemo and surgery.

I was told that light cases of Bell‘s Palsy could resolve in 2 to 3 weeks and more significant cases could take 3 to 9 months. Ever the optimist, (can one will their facial nerves to move? If so, I’ll do it!) I focused on the idea of 2 to 3 weeks and met with a physical therapist who specialized in facial movement. She let me know that there wasn’t much to be done until the nerve decided to start firing on its own. Until then I could use warm compresses and do acupuncture. And red light therapy couldn’t hurt.

So I added these to my daily & weekly routines. I became an acupuncture connoisseur, going 2-3 times each week.

I was surprised to find that Bell’s Palsy felt more depressing and lonelier than going through chemo. For the first month, it was hard to even speak (and ironically, it was very hard to say the B in “Bells” and the P in “Palsy” as I was explaining my situation to people. I’ve decided whomever named it had an evil sense of humor). And I’m normally quick to laugh, but a big smile immediately feels weird and “pulls” your face to the unaffected side. Which means joy turns to frustration in an instant.

Eating was also frustrating. I gained a healthy appreciation for all the behind-the-scenes work the tongue and inner cheek do while we eat, since mine weren’t functional on one side. Similarly, drinking was a disaster; my coffee mug looked like a crime scene… and don’t get me started on using a straw.

The biggest impact was that it affected my “good eye “ (the one with much better vision). With Bells Palsy, you can’t close your eye all the way as the top lid doesn’t go all the way down and the bottom lid doesn’t tighten upwards. Therefore the eye is perpetually dry and you have to constantly use eye drops and ointment, which makes everything blurry. That means it’s hard to read. It’s hard to watch TV. It’s hard to even see your to do list.

The only thing I could do that didn’t bother my eye or mouth- and that brought me some level of peace- was yoga. Even going for my usual walks was complicated because any wind (hello, San Francisco) bothered my eye. I had to wear a clear single goggle when outdoors, which always makes one look & feel cool and trendy…

At three weeks with no real progress, my doctor and I decided to schedule a CT scan to make sure the cancer hadn’t metastasized to my brain. The ideal scan would have been an MRI, but since my post-mastectomy tissue expander contained metal, this wasn’t an option. A CT scan could show potential problem areas, but if it did, I would still need an MRI to distinguish if it was cancer. So, we decided to opt for the CT scan as a start. I was beyond relieved to get the results that there was completely normal brain structure and no need for the MRI.

At four weeks out, I was able to squint my eye a little bit and clench my smile a bit. At six weeks out, I could fully blink, albeit delayed in comparison to my other eye. Now, at 2.5 months, I can smirk on the right side and start to raise my right eyebrow. Friends and family tell me that in regular conversation you almost can’t notice it. It’s when I laugh, or when someone takes a photo, that it’s very obvious. So now all photos of me have a serious face or my hand covering the affected side of my mouth (see below).

Overall, Bells Palsy is a pretty demoralizing affliction. It is hard to look at yourself and feel like, well, yourself. I’ve learned over the last two months to be more patient and gentle with myself than ever before. And I’m just chalking it up to another challenge of this year. But the year ends soon… take note, Bell’s Palsy, your time is nearly up.

Find yourself some dear friends who don’t care about your serious face in a silly photo.

Controlling My Controllables

A week after my mastectomy, I got the great news that I had a pathological complete response (pCR) which means I am cancer-free. It’s amazing news, and I’ve been reflecting a lot on my journey to get to this point.

Besides the obvious challenges, one of the less visible impacts of having cancer is that you’re suddenly this patient TO WHOM things are happening. There is a significant loss of control over your own life and how you spend your time or make your decisions. You can feel like you are always waiting for the next thing to happen.

But there were times when I was able to wrestle some control of my “controllables” and make decisions that felt empowering for the moment or for my future. And while there’s no way to know exactly what combination of behaviors resulted in my particular pCR, I felt good about engaging in them as a beneficial practice. To be clear, a pCR is a GIFT from the universe, and/but these are some things that can make it more likely.

  1. Quit Alcohol- I haven’t had a drink since the week before my diagnosis (7 months ago). Friends have asked if I’ll continue avoiding now that I’m cancer-free… and I’m pretty sure I’ll stay the course. I’m much more aware of all the things contributing to cancer and it doesn’t feel “worth it” to me. There are other things I’d rather relax my “rules” on. That said, no judgement- we all need to decide which things fall into the “never” or “occasionally” categories.

  2. Record everything- whether you’re a paper person/notes app/google doc user, this is the time to start keeping notes. I jot down everything about my cancer. It started the day of my diagnosis- and I still do this. I record doctor and care team conversations, names and phone numbers of medical assistants, questions that arise for each provider, daily side effects, and more. And I refer back to these journals a lot, and it helps me feel like I’m on top of things and also advocate for myself with doctors.

  3. Adopt Stricter Nutrition: if you search for cancer-free cooking or eating plans you’ll find lots of great information. I personally took most of what I learned and applied it; no added sugar, no red meat, very limited dairy, no white starches, lots of antioxidant veggie and fruits, and much more plant based proteins like lentils, chickpeas, and other beans. I would have defined myself as a healthy eater before cancer, but I can see and feel the difference these changes have made.

  4. Strengthen Your Body: I experienced what felt like very antiquated messaging to cancer patients in chemotherapy and throughout the treatment journey- like “stay strong but don’t over exert yourself” and “take it easy and conserve energy.” Yes, chemo Is really difficult and creates so many side effects that get in the way of fitness. But I really learned to appreciate the maxim that “action precedes motivation” and found that every time I walked, worked out, or even stretched I felt better. I started working with a personal trainer who has helped me focus on breathwork, strength, and mobility (and other than the cancer, I am now getting back into the best shape of my life- thanks Keir & Foghorn Fitness!).

  5. Focus on Sleep & Recovery: I’ve been obsessed with my sleep quality for years. And I had figured out a great regimen before my diagnosis. But the persistent anxiety and physical side effects of chemo wreak havoc on sleep, and I had to really regroup in a number of ways in order to recover during treatment. I upgraded my sleep hygiene; no screen time before bed, phone charged in living room at night, earlier dinners, cooler pajamas, weighted blanket, sleep mask, and ear plugs. Then I did a lot of advocacy and followup with my oncologist and primary care physician to ensure I had prescriptions that supported sleep. This is work in progress but probably impacts every area of my life- well worth obsessing over.

  6. De-Stress Your Life: a few weeks into my diagnosis- before I even started chemotherapy- I heard someone talking about “dis-ease” and how the opposite is to “live with ease.” That really resonated and I started making a concerted effort to prioritize being ease-ful, and to not sweat the small stuff. I’ve revisited this idea over my treatment journey and built on it as an intentional practice. Studies show the detrimental long term consequences of stress, and being diagnosed with cancer feels like a wake-up call on this front.

  7. Focus on Priorities: as a result of actively trying to live with ease, I also took the opportunity to think proactively about my personal values and priorities. Besides reactively removing stressors, what to I want my life to be proactively comprised of? For me, it’s learning, adventure, challenging myself, self-care, and creativity. I’m making a concerted effort to ensure my days, weeks, and months contain these things that bring me joy.

  8. Accept Help: It sounds cliche to say, but this was (and is) a hard one for me. My friends and family have been incredibly generous in all ways and it’s hard to not feel indebted or needy. I’m used to doing things myself, or asking for help in a more planned, curated way. But that’s a luxury I no longer had, and it’s been such a beautiful blessing to feel the support and love from my community. It has made the last eight months bearable and at times, even joyful.

  9. Get a Little Woo-Woo: After a cancer diagnosis, I found I was more open than ever to things I had previously considered “alternative.” I started really honestly practicing meditation (as opposed to going through the motions every now and then). I also took time to create a manifestation board, which houses my priorities and things that inspired me and my ultimate goal (pathological complete response). And I tried (and loved) sound baths and reiki sessions. All of these things lowered my stress levels and helped me feel empowered.

  10. Take Your Time: There are points in the journey where time becomes an issue. When I was diagnosed, all the appointments and navigation felt like a part time job for a while, and acknowledgement of that felt important to normalize. Then midway through chemo, I realized it was starting to take longer for me to recover from each round. I had been working but taking a few days off after each infusion- and finally made the decision to take a leave of absence to focus on recovery. My supervisor and CEO and work colleagues were incredibly supportive. And between each phase (chemo, surgery, reconstruction) I’m finding myself getting impatient to be recovered- once again I need to allow myself time heal and process the experience.

I’m sure there will be more learnings along the way, but that’s it for now.

Post-Surgery Surprises

I had thought a lot about my recent surgery in advance. Having a mastectomy is a scary thing, so asked a ton of questions of friends and my surgical team.

That said, even after all the preparation there were unexpected learnings after a mastectomy.

Here’s a shortlist of the most noteworthy things I didn’t know I needed to know (and didn’t see on any other preparation list):

  1. Bumpy Roads. At discharge, my pain was manageable. However, the ride home was close to excruciating. Every bump or crack was jarring. If I were to do it again, I’d accept (or ask for) an additional dose of painkillers before leaving the hospital.

  2. The Tupperware Lid. A friend of mine who has navigated breast cancer warned me- if you’re having reconstruction after a mastectomy, the tissue expander feels like having a tupperware lid in your chest. She was so right. The sensation is very weird and more bothersome for me than the actual surgical incision pain. And every now and then there’s a spasm so painful and ongoing that it takes my breath away.

  3. Opening Things. After a mastectomy, it’s pretty common to “guard” that side (or sides) of your body and feel reticent to use the hand/arm. And you’d be surprised at how much you use your core or chest area when you exert effort. Therefore it’s nearly impossible to twist or open things. I had to have my sister or husband open all my post-surgery meds and pill bottles even though I can technically use both hands.

  4. Flossing Woes. On the same note, I was terrified to lift my affected side arm in a way that would allow me to floss my teeth. I tried flossing with only my “good” side hand (hilarious), or with floss picks (useless), and then gave up for a few days/week until I felt more comfortable lifting and moving my arm. For a daily flosser, this was unexpectedly annoying!

  5. Skin Irritation. While I found the mastectomy pain significant, it was mostly manageable. But I ended up with hives from the surgical drain and the EKG pads, which was SO uncomfortable. Zyrtec resolved this issue but I found I needed to wear my drains on the outside of clothing for the majority of each day, to not create additional warmth or pressure against my torso.

  6. Amass the Button-Downs. And zip fronts. And shawls/wraps. You’ll be wearing things that open and close all the way in front, and are baggy enough to not put pressure on the surgical dressing. These larger looser clothing items also do a good job of camouflaging the drain and tubing if needed. You’ll need this for At least 3-4 weeks.

Other than these notes, I’ve found most other aspects of the mastectomy are explained or expected in advance of surgery.

Me, enjoying an early birthday with friends and my sister, a few days before surgery.

Today Is A Good Day

Having cancer and enduring treatment is a roller coaster. I’m currently between two phases (finished chemo and having surgery in two weeks) which means a few extra weeks to recover and reflect on the ups and downs so far.

Getting the cancer diagnosis is a major down. Obviously.

But then a big “up”- your friends and family rally and you’re reminded of how much love surrounds you. Real priorities in life become clear and obvious.

And then there are scans, updates and more anxiety. Down, down, down.

But you learn to not sweat the small stuff. A perspective shift; an up.

And then the chemo side effects. Ugh, such a downer.

But then you near the end of a treatment phase. Phew, a small up.

And on and on.

A week ago, I was stuck in a low point- I had finished my final chemo of this treatment phase- and I expected to be feeling better. But chemo effects are cumulative and by this point I just still wasn’t feeling myself. And the unknowns of surgery and subsequent treatment weighed heavy on my mind. I started to wonder if I’d ever feel normal again.

But here I am, one week later. I went for a walk this morning that turned into a run- which hasn’t happened since I started chemo 5 months ago. It felt great.

My body is healing. My spirit is healing. I’ll soak it up while I can, and remember this at the next curve of the roller coaster.

Mid-run; my first in 5 months. Baby steps.

Funny Sh*t People Say When You Have Cancer

Early on in my diagnosis, I knew I needed a way to stay grounded and make light of the heaviness.

I started informally keeping lists- about anything and everything related to cancer. One of my favorites is the funny things people say regarding cancer...

Upon hearing of my diagnosis:

  • “First off, CRAP!” (Agreed!)

  • “This is just a bunch of cells misbehaving. We’ve got this.” (This one made me giggle)

  • “God gave you the first pair, YOU get to pick the second!” (Well now, that’s sassy! )

  • “Oh my gosh, I’m going to throw up” (Gosh, that sounds terrible for you)

  • “I hope you feel better soon!” (From a kiddo who didn’t fully understand yet, but that made me laugh)

  • “You’ve had so many biopsies they may as well just take the boob” (yup, agreed!)

In the doctors office:

  • “I’m surprised you found the lump- Your breasts are pretty bumpy in general.” (Ummm,… thanks?)

  • “For the PET scan, we will now have you sit in a dark room for an hour. The radioactive tracer will be absorbed into the bloodstream. No distractions or light allowed.” (Cool, so I just got a cancer diagnosis and you’re going to leave me alone with my thoughts for an hour? Sounds great.)

  • “For this MRI, go ahead and put these ear plugs in.” (I put them in, and the MRI Tech continues to give me instructions that I now can’t hear. I take them out and giggle. He does not. Which of course makes me giggle more).

  • “So we think we’ve macguyvered the table such that it will work now and we can continue with your biopsy. Are you comfortable with this?” (Ummmmmm is there a hidden camera here? Seriously?)

So… You Have Cancer

I just spoke with a dear friend who called because someone close to her just received a breast cancer diagnosis.

And I immediately put myself back in that moment- that three-week long moment- when I was in a state of constant panic, suspended disbelief, and cognitive dissonance. “Uhhh! I have cancer!”, I’d realize. Again and again. How can the same thing surprise you, over and over again?

And then I’d muster up my energy and be as positive as possible when sharing the news. Because I didn’t want to make others uncomfortable. I’d joke around a lot (and still do, TBH) about “playing the cancer card” (let’s be clear, that card trumps them all- if you have it, play it).

Looking back, the first few weeks after getting my diagnosis were probably the hardest, emotionally. In addition to the ongoing surprise of having cancer- I mean, it’s so off-brand for me!- there was the additional anxiety of waiting for test results.

It’s like “you already know it’s bad, but now let’s play this game” where we look at aspects of your cancer, test you for them, and make you wait to hear how you measure up. And for extra fun, there will be a new message notification on your health care app after each blood test, biopsy, or scan. That way, the little red “1” can give you mini-panic moments throughout the day. How spicy!

And yet- you will get through this time. You will get to a time when you’re not in constant panic, or constant navigation of the healthcare system, or constant existential crisis.

Here are some things I found helpful:

  1. Find an oncology therapist. My healthcare system has an oncology therapist who is amazing and only works with cancer patients. She’s caring and connected and right at the beginning helped me reduce my anxiety. I did this early on and I had to push for it and it was worth it.

  2. Get moving. I took so many walks those first few weeks and they really helped me clear my head. And then I started walking while listening to Radical Remission by Kelly Turner, PhD and it helped me focus on the positive approaches I wanted to incorporate into this journey.

  3. Find your support team. Two of my dearest friends took on making a meal train for my family, communicating with friends who lived elsewhere, and they have made sure to get me out on walks regularly, since the very beginning.

  4. Talk to people who have been through it. I am eternally grateful for the three women I know who have been through breast cancer and the generosity with which they have shared their experiences. I have learned a ton from each of them about what to do, what to avoid, and how to advocate for myself. There are so many phases of treatment and you often don’t know what information or support you need until you hear it shared.

  5. See if your system has an Oncology PCP (primary care provider). I switched from the regular PCP I had for 15 years to a doctor who understood the cancer landscape and helps me make sense of it every time we meet. I would not have known that this role was even a “thing” if it hadn’t been for my oncology therapist.

  6. Get to know the Schedulers & Doctor’s Assistants. Taking control of your cancer journey is a whole job in and of itself. You’ll have your oncologist, your surgeon, a therapist, a nurse, navigator, a breast care team, and more. I found that most of the Schedulers and Doctor’s Assistants- who help you interface with your doctors or care team- start their day at 8:30 am, so I’d be sure to call at 8:31 am to get updates or confirm appointments. This will significantly reduce the amount of time you are waiting. There’s a lot of waiting built into this journey and the more I take control the better I feel.

  7. Maintain your sense of humor. I found it really helpful to laugh, even ironically, at times. I even started a list of “Funny Shit People Say When You Have Cancer” just to create some levity (and will be doing a blog on that one soon). And my husband started sending me Daily Pig Content (DPC for short) because baby pigs are just too cute and funny.

  8. Just put one foot in front of the other. I think this was the most helpful thing of all- the realization that “I am where I am” and no test result or worry can change what currently IS, so all I can do is focus on the next best thing to do. Move forward. Stepwise. As my therapist told me, “anxiety lives in the future.” So I try to understand what is coming soon and focus on the now. What do I currently have control over? And therefore, what is my next step? Sounds obvious, and maybe it is. But I hope you find a mantra that works for you in this moment.

The Silver Lining

When you’re first diagnosed with cancer, your world suddenly narrows, and all you can do is focus on this one true, awful, thing.

I have cancer. But how is that possible? I’m only 50, I’m very active, I live a generally healthy lifestyle. As I’ve said before, breast cancer is pretty “off brand” for me.

But it is what it is. I can’t change reality. And realizing that- putting one foot in front of the other each day when I wake remembering my situation- has helped me put my entire life into perspective.

Carl Jung wrote, “I am not what happened to me. I am what I choose to become. “ I have thought about that a lot since my diagnosis – how do I want to move forward? What do I actively choose given my situation, despite my situation, because of my situation? What is the invitation in this diagnosis?

It would be hyperbolic to say that being diagnosed with cancer has been, in some ways, a gift. However it has brought into focus the gifts in my life. A silver lining, a real one. And I can see it now in a new light, five months into this journey.

Friends and family have shown up for me in ways I could not have imagined. From initial messages (“this will be ok because we will make it ok”) to wise words and thoughtful advice from those who have been through cancer themselves (“I used this during chemo and it helped” and “yes, this sucks!”) to constant encouragement and regular check ins (supportive or funny texts, invitations to hikes, visits during infusions), to gifts that make this time easier for my family (meals, donations, and care packages). One of my music-loving friends regularly texts me with what I now refer to as my RMI (Regular Music Infusion) and introduces me to new artists or great albums. My husband instagrams me my DPC (Daily Pig Content) so I can get a serotonin boost. And…. On and on. I’ve just been blown away by the constant love.

So that’s the silver lining to cancer, for me. A bright spotlight that shines on the real priorities in my life- the connections with others.

One of many hikes with friends

The Good, the Bad, & the Ugly: Side Effects for TCHP Chemo

I just completed my sixth of six rounds of chemo. I’m very relieved and happy for the milestone… and simultaneously wanting to “not jinx” myself by letting down my guard (I’ll dive into that psychology another time).

For now, I’m reflecting on what a journey this has been for the last four and a half months, especially navigating the side effects for neoadjuvent (before surgery) chemotherapy treatment for Triple Positive Breast Cancer with TCHP (docetaxel or “Taxotere”; carboplatin; trastuzumab or “Herceptin”; pertuzumab “Perjeta”) protocol. This therapy (via infusion to a port in my chest) is administered every 21 days, for 6 rounds total (4.5 months).

Some side effects were able to be mitigated with medications, or by altering my diet, or by using preventive measures. Here’s the list of my personal experiences from my daily journal and how I navigated them- in order of when they showed up as a side effect.

And all in all, I experienced chemo as a big drag… however, you can do it – you can get through it- by taking it one step, [and one side effect] at a time.

  1. Weight Loss: I began losing weight as soon as I got my diagnosis in early September. The stress and anxiety were major factors, but I also immediately cut out alcohol and all added sugar. I also did a lot of research on cancer-fighting foods and ingredients to avoid like white flour, white potatoes, red & processed meats, and more (See below for resources). I was not trying to lose weight (and in fact, became concerned through my first round of chemo as I continued on that trajectory) and things seem to have stabilized as I head into round six).

  2. Nausea is the first post-chemo symptom that I experienced, and it was worst on Day 3 through Day 7 after my infusion, initially. However by Round 5 of chemo, the nausea could last as long as Day 12. I learned to really stay on top of the anti-nausea medications (Zofran and/or Compazine in my case). Initially, I avoided them because they also cause constipation, but I learned to accompany them with eating a kiwi which has the opposite effect (quite proud of myself for that food pairing). The reason the nausea doesn’t start until day three is because you’re generally given steroids for 2-3 days after an infusion to help mask the impact of the chemo. (My husband affectionately refers to the last steroid day as “Super Saturday” because I have lots of energy built up and talk quickly at this point in a cycle... and have been known to clean the entire house) Along with the nausea, I often felt dizzy, a little off-kilter, or just jittery.

    One thing that helped with some side effects, including nausea, was incorporating the Fasting-Mimicking Diet (FMD) before an infusion. I started this on Round 3 and could see a difference in all my subsequent rounds (as compared to Rounds 1 & 2, when I did not use this protocol). I’ll share more about FMD in detail in a future post.

  3. Hair Hurting & Head Goosebumps was the next side effect I felt, despite using the cooling cap. I first felt this on Round 1/Day 6; I would come to find out later that this would get progressively worse and might correlate to where I was shedding or losing hair. See later for more on actual hair loss.

  4. Metal Mouth & Mouth Sores were the next fun surprise. I had been under the false impression that this only happened with oral chemo, and I was getting my chemo by infusion. Not true! Any fast growing cells (hair, nails, mouth) are really impacted by chemotherapy. What started as a metallic taste in my mouth (Round 1/ Day 4) progressed over the next few days to a point where my gums hurt, smiling hurt, closing my lips over a fork or spoon to eat, hurt, etc (Days 6-9). In talking to others, there are two main ways to avoid this; one is to chew on ice chips during the infusion to reduce blood flow and therefore chemo to the mouth. The other is to use a glutamime rinse afterwards. I did both for rounds 2-6 and was able to eliminate 95% of this problem moving forward.

  5. Dry Skin on my fingers and lips started showing up on Round 1/Day 12. Aquaphor has been my wingman ever since- I keep tubes of it everywhere and sometimes slather it on my fingers overnight with gloves or socks on my hands. During the day, when I take a walk, I often use a pair of those thin winter gloves with tech tips- I’ll put Aquaphor on my hands, put those gloves on over it, and then I can still use my phone to listen to audiobooks or podcasts.

  6. Hair Loss started happening in Round 1/Day 19 and I have an entire post dedicated to this (there’s so much to share). I continued to shed into Round 2 and then decided to cut my hair short. As of Round 6, I’m still shedding a little bit of hair, but I also believe that some of it is already growing back. The most surprising hair loss anecdote is that as of Round 2/Day 17 I realized I had no nose hairs left, and this means a constantly drippy nose, especially when you lean forward to do anything. I have to have tissues with me all the time unless I want to have a netti pot moment.

  7. Chemo Brain came on suddenly at Round 2/ Day 4. I remember being on the phone talking with my sister, realizing I didn’t have the words to say what I was trying to say, and I couldn’t even remember what I was actually trying to say. The forgetfulness and loss of words only lasted a day or two for me each round. And I sometimes also have migraines on those two days.

  8. Toe/Finger Cramps & Neuropathy was a fun surprise at Round 2/ Day 5. I happened to stretch my feet and hands out, and got an immediate toe and finger cramp. I initially chalked it up to dehydration, but I am a pretty good water drinker and was being sure to get enough hydration through water, electrolytes, and tea. Then on Round 4/ Day 8, I experienced a little more typical neuropathy; my pointer finger and thumb lost a little bit of sensitivity and the bottom of my feet felt slightly numb. That continues to happen in subsequent rounds at approximately Day 8 and resolves by Day 14. This did contribute to me cutting myself while slicing veggies this round as I couldn’t really feel the edge of my thumb.

  9. Eyesight, Eye Twitching & Light Sensitivity started being a problem around Round 2 / Day 15. It came on sort of gradually and then all of a sudden, I realized my existing glasses weren’t strong enough. My eyes are constantly twitching, which is distracting when you’re trying to focus on something or have a conversation. In general, this seems to be worse the second week of each round, but it’s also omnipresent. My oncologist says this typically resolves after chemotherapy ends.

  10. Chemo Belly & Gut Issues have happened every single round, and seem to get worse each time. Generally on Days 5-10 I experience bloating and constipation. It’s super annoying; you can feel “full” while at the same time being quite hungry.

  11. Taste Changes did not really affect me until Round 3, Days 4-10, but it means most food tastes uninteresting and unsatisfying (it did not make me less hungry, it just meant that I was less happy with the food that I was eating). It also made water less tempting to drink- I deal with this by drinking lots of herbal teas and using my LMNT electrolytes (see below).

I found it pretty helpful to document what I was going through so I could be specific with my oncologist- she could help me determine if there were any ways to mitigate some of the side effects. It also helped me pinpoint which solutions were working from one round to the next. But mostly, It helped me have a sense of control to know what I could expect on any given day and what sort of plans I could make for self-care, activities, or work.

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Resources:

Thumbs up for the sixth of six infusions

R5 / D15: The Nitty Gritty

TCHP Chemotherapy: Round 5 of 6 / Day 15 of 21

Sleep: Bah! Six hours of sleep, again. Lately I’ve had very low REM and more light sleep- not ideal. (Deep and REM sleep are when the body recovers). This week, I’m going to make a concerted effort to be in bed by 8:30 (screens off by 7:30), ear plugs in, and sleep mask on (favorite Dore & Rose sleep mask linked below- it’s a real winner).

Whoop Score: My recovery score was 48% (moderate), due in part to the subpar (67%) sleep score. Not my best work! My respiratory rate was also up last night which could indicate fatigue or illness, and my guess is it’s a reflection of some hard workouts this week.

Body Scan: On that same note, my muscles have been sore this week; as I work hard to build & maintain lean muscle. Over the course of the last four months I’ve experienced significant weight loss, and want to prevent sarcopenia (muscle loss that can be associated with chemotherapy and can impact outcomes). My focus on staying fit and strong should be increasing the efficacy of my chemo and reducing the side effects (see article linked below).

On My Mind: There should be a Little Free Library for breast cancer supplies. The amount of THINGS one needs to purchase to better your outcomes or reduce side effects is never-ending. Or maybe a monthly swap meet, at which you can relinquish things you no longer need and snag something you were just about to need to purchase. Or an exchange-match program. I guess they say “necessity is the mother of invention” so perhaps I need to create this.

Fun Fact: Neuropathy sucks. I knew this was a possible side effect to TCHP chemo, but until Round 4, I hadn’t experienced it. I did take preventative measures right away- I ordered hand and feet icing packs (similar to cold capping for hair, these are gloves and socks with ice packs inside- made to reduce blood flow- and therefore chemo impacts- to hands and feet). Now, in Round 5, at approximately days 4-10 after infusion, my hands feel a bit shakey, the bottom of my feet can feel slightly numb, and both my hands and feet occasionally cramp up with no warning. It is worse this round than last round, however, I will note that I fell asleep a lot during this last infusion, and therefore hadn’t put my gloves and socks on- I wonder if the reduced icing time contributed to increased neuropathy. With one infusion left in this series, I will be hyper-focused on icing my hands and feet for the duration. (See below for link to hand/foot icing gloves).

Resources:

The Long And Short of It: My Hair

Every night, I pick up my hand mirror and study the back of my head. It’s a morbid fascination with the large thinning/bald spot on the crown.

Today I wondered, is my hair starting to grow back? Is there slightly more there than a week ago?

But let’s back up. Five months ago I learned I had breast cancer and one of the first things that became clear was that my chemo was going to be a doozy. I’d need to get used to the idea of losing my hair.

The last thing I wanted was to “look like a cancer patient.” I often joked that even the idea of having cancer felt “off-brand” for me.

Regardless, I knew I wanted to “control my controllables” so I did my research and got mentally and logistically prepared (see below for some resources). I decided a wig was not for me, but that I would lean into hats and scarves. Luckily we were approaching fall and winter so the timing worked in my favor.

I also looked into “cooling caps.” There are a few different systems that reduce the impact of chemo to your scalp, and therefore lessen the short term and long term damage to the hair follicles. While my insurance did not cover this benefit, my infusion center provided access to it, and I decided it was worth the hefty price tag to attempt to maintain my hair throughout chemo.

Many of these systems will offer you general guidance on how well the cooling system will work for your chemo protocol; mine predicted I had a “75% chance of keeping 50% of my hair.” I thought that was some pretty fancy framing/math!… And sounds a lot better than saying “you’ll probably keep 37% of your hair.” (I’d like to answer serious questions like this moving forward. How old am I? Well, there’s 140% chance that I’m 36.)

So I proceeded with the cooling cap and also prepared to still lose a significant amount of hair. I took precautions like washing my hair only twice per week. I brushed gently each day to keep my hair healthy. And I started to get a little optimistic.

Two weeks after my first infusion, I thought, “could I be an exception to the rule? Am I one of the lucky ones?” (Says the woman with breast cancer)

Let’s cut to the chase… No. They say you’ll start to shed around 2-3 weeks after the first infusion. Round 1 / Day 19, it started. And it just. Didn’t. Stop.

On Round 2 / Day 6 I decided to cut my hair myself to eliminate some of the weight of it. I cut a few inches off so that my hair was shoulder length. But each day, I wondered, do I need to shave it? When will that happen? And eventually, you get tired of the waiting. You just want to take control of the situation.

The next day, my sweet hair stylist messaged me offering a pixie cut to make the most of the hair I still had. And cutting off ten inches of hair was actually less traumatic than I expected. She made it safe and caring and as fun as could be. (Thanks Jennifer!) That was Round 2 / Day 11 (32 days after starting chemo).

The funny thing is you also lose NOSE HAIRS. Like, all of them. And guess what? It turns out that your nose hairs are there for a reason; they keep you from having a drippy nose. Even if you are otherwise healthy (well, except for the cancer) your nose drips 24/7 if you have no nose hairs! Maybe you know this. I did not.

But back to my head. By the time I had the third round of chemo, I was wearing a beanie or a baseball cap whenever I left the house. There was an ever-growing bald-ish spot on the crown of my head (just perfect for a yarmulke or zuchetto if I were to wear one!- sadly, I don’t). The good news is that I kept a lot of hair around my hairline, so I often have bangs framing my face, peeking out from under my beanie. Like Waldo. Or the blond guy from Flock of Seagulls (did I just date myself? You already know I’m 140% of 36)

And so here I am on day 98- with 5 rounds of chemo under my belt and one left to go- with the possibility of growth. That feels like a win.

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Resources:

R5 / D12: The Nitty Gritty

TCHP Chemotherapy: Round 5 of 6 / Day 12 of 21

Sleep: woke at 4:50 to enjoy some extremely weak coffee (don’t want to point fingers but,… husband) in front of the fireplace. Only 6 hours of sleep but a third of it was REM, which means my body is processing new learnings, memories, skills. That tracks with my new start to the year.

Whoop Score: Despite my lack of sleep, my recovery score was bright green at 90% and my HRV was higher than recent average. This signals my body is ready to perform. Since I’m not extremely well rested but my body can handle strain, I’m going to opt for a long hearty hike at Tennessee Valley- combining my daily/weekly goals of adventure and self care. See below for pics.

Body Scan: This round of chemo has done a number on my skin. My lips are chapped and the tips of my fingers are so dry they are velcroing themselves to any adjacent fabric. I own 5 tubes of aquaphor but can’t find any of them… it’s like pens or glasses… they are everywhere until you need them. My pro tip (after finding the aquaphor) is to buy a few pair of those cheap gloves with the tech tips on the finger and the thumb, slather a bunch of Aquaphor on my hands, and then cover up with the gloves. Now you can do things, including using your phone, without getting everything slimy.

On my mind: “what will I do with my one wild and precious life?”- Mary Oliver

Fun Fact: Eye twitches. Like, all the time. It’s super distracting. Has progressively become worse with each round of chemo but my oncologist assures me that like my declining vision, things will go back to normal within a few months after the infusions cease.

R5 / D10: The Nitty Gritty

TCHP Chemotherapy: Round 5 of 6 / Day 10 of 21

Sleep: woke at 2 AM and laid there until 4:15. Reminded myself that I am the “CEO of this cancer experience” and got up to GET STUFF DONE.

Whoop Score: 48% recovery despite a physically strenuous day prior and 94% sleep performance. Sleep debt down to 21 minutes. Still- this means I focus on recovery today- walk, yoga, meditation.

Body Scan: slight mouth soreness, but I haven’t used any Helios in a day. A good reminder that the stuff really works. Took a Pepcid and a Compazine at 4:30 in the morning to stave off any nausea. (Note: why is nausea so hard to spell?) Despite all that, today is the first day since my infusion that coffee tastes good again. Phew!

On my mind: I am wondering if I can start using my infrared sauna again during recovery after chemo is finished. There’s very little data out when you google it- other than articles that basically say “saunas are nice” or general studies unrelated to cancer recovery, or things written by sauna companies. I have a feeling this is going to be one of those cancer questions with no good answers. Questions for which my oncologist won’t have any protocols to refer to and so can’t answer, and to which the Integrative Medicine doctor will tell me that “it’s probably best not to.” I don’t want to do something that will harm my recovery. In fact my desire to add sauna time would be to aid in healing. But I find that in oncology, sometimes the lack of a certain proof means you get a “no don’t do that” even when common sense tells you it just may be a lack of documented positive studies.

Fun Fact: over the course of the last few rounds, I have found it really hard to drink water. Normally I drink a ton of water and carry my water bottle everywhere. In fact, if I had to be a superhero, it would be Super Hydrator. But it’s so true that chemo changes your taste buds, and I will say that adding a packet of LMNT electrolytes has been the best way to stay hydrated and actually enjoy drinking my water.