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.

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.

Round and Round I Go

I was diagnosed with Stage 2 Triple Positive Breast Cancer on September 9, 2024. In the first phase of my active treatment, I am undergoing neoadjuvant chemotherapy and then will progress to surgery and subsequent future treatment phases.

For those new to breast cancer (or anyone like me five months ago) there are many different types with incredibly different treatment plans. I’m in the small percentage of people whose cancer is “triple positive.”

Besides it sounding like the recovering overachiever that I am, what this actually means is that my cancer is both “hormone receptor positive” or HR+ (meaning the cancer has estrogen (ER+) and progesterone (PR+) receptors that use these hormones to grow) as well as “HER2 positive” (meaning the cancer has high levels of a protein called human epidermal growth factor receptor 2 which can cause it to grow & spread more aggressively). The good news is that this type of cancer often responds well to therapies that specifically target both the 2 hormones and the HER2 protein.

Part of the challenge I found as I was seeking information va early in my diagnosis was that there weren’t a lot of people sharing about Triple Positive Breast Cancer and TCHP chemotherapy (docetaxel or “Taxotere”; carboplatin; trastuzumab or “Herceptin”; pertuzumab “Perjeta”). And because each kind of breast cancer is so different, one person’s experience can be wildly different from another’s. So I’ll be diving into the good, the bad, and the ugly of my experience specific to Triple Positive and the TCHP protocol.

2025 Promises: They Just Hit Different

Every January, the same. How will I start this year better than the last? How will I achieve my goals and fulfill my purpose?

Well, one super quick way to really clarify things is to get a breast cancer diagnosis. That’s what fall of 2024 was for me. More on this later.

So as I observe some of the trends for kicking off 2025 (“more of/less of”, “leaving/taking”, one word theme, etc.) here are my thoughts:

GOALS:

  1. Be cancer-free by Dec 31, 2025

  2. Share my “journings” (journey and learnings) so others can benefit

  3. Enjoy my life, be more content by experiencing the following each day/week;

    the joy of LEARNING;

    the pleasure of CREATING;

    the fun of ADVENTURE /being in the “now”;

    the pride of RISK-TAKING; and

    the happiness of SELF-CARE

METHODS:

  • Less coffee, More water

  • Less screen time, More quiet mornings

  • Less planning, More enjoying

  • Less Future & Past, More Now

  • Less Control, More Freedom

  • And most importantly; Less “hoping for the best, but setting the bar low to avoid disappointment”… and More creating, doing, and ultimately, manifesting.

BRINGING INTO 2025

  • Wake up between 4:30 and 6:30 AM

  • Yoga, stretch, or walk by 7:30 AM

  • Breakfast by 9:30 AM, switch from coffee to water

  • Last coffee before lunch

  • Late morning: creating and doing while my brain is super active

  • After lunch: learning and self-care while I’m calmer

  • “When at home, dock my phone”

  • Short walk after dinner

  • In bed by 9 PM

100-Day Project: Getting Started

I’m still not sure what got me started, really. I’d been eyeing the “100 Day Project” idea for a while, assuming I’d focus on writing. I’ve always wanted to write. (Or most times, to have written.) And this goal- based structure seemed up my alley. But I was never to be able to find much momentum to start.

And then COVID hit, and I couldn’t bring myself to find energy for anything after long days of zoom meetings.

So when the 100 Day Project came around again a month ago, I decided to focus not on what I “should” do but what I wanted to learn. The shelter-in-place meant that we started taking daily neighborhood hikes, admiring all the outdoor staircases in the Sunset district. What if I tried my hand at drawing the stairs? I could combine my fondness for these stairways with a desire to learn the Procreate app.

As of yesterday, I’m on Day 25/100:

It’s satisfying to work hard at something and see tangible bits of progress. But mostly, I’m enjoying the unexpectedly meditative nature of this experience.

Finding Hygge Amid COVID

hygge hyg·ge / hew-ga / hoo-ge

a feeling or moment, whether alone or with friends, at home or out, ordinary or extraordinary, that is characterized as cozy, charming, or special. regarded as a defining characteristic of Danish culture.

There’s nothing like a global pandemic to put life into perspective. While we are doing our part and hunkering down, I’m compiling my “COVID-19 Hygge List.” Given the current recommendations for social distancing, and our personal responsibility to the global community to “flatten the curve,” this list of feel-good activities contains only individual or closed-network ideas with my own family, and the only “going out” involves the outdoors away from others.

  1. Curling up with a good book (my current faves are Glennon Doyle’s Untamed and Peggy Orenstein’s Boys & Sex )

  2. Listening to Coffee Break French podcast (goal: fluency by summer! One can dream…)

  3. Allowing my kids to enjoy lordagsgodis (Saturdays only!)

  4. Enjoying Nutpod creamer in my coffee (so much creamier than almond milk)

  5. Going for a hike, but with an end goal in mind (very satisfying)

  6. Getting additional sleep with my weighted blanket (seriously, don’t we all want more sleep?)

  7. Practicing laughter yoga with my kids (silly, joyful, and easy to do)

  8. Baking, baking, baking! (My pie dreams are inspired by the beautiful art of Lauren Ko)

As others have said, while it’s tough to stay in and not be with others, it’s the least we can do to during this global crisis. Find yourself some hygge during this time.

Pie #1 was super fun to make but not a success, which just means we need more practice!

Pie #1 was super fun to make but not a success, which just means we need more practice!

Larger Than Life: Hon. Mark G Farrell

Dad loved life. He was a connoisseur, passionate 110%– dad believed in going big or going home.

He appreciated everything, lived in superlatives. He was the most charming, the wittiest, the smartest, the most fun- to keep up with his banter and earn a laugh was the ultimate prize. I can hear it now- that booming, generous, genuine laugh- head thrown back, crinkles at the corners of those clear blue eyes. Dad really was larger than life.

First there’s the wine. I remember when this appreciation started, particularly the awkward “label requesting phase.” He so wanted to know everything about his wine. He’d often—to our chagrin, and with total confidence—ask the waitperson or server to carefully steam off the label so as to not rip it and so he could add it to his wine journal with tasting notes. As the years progressed, he became more and more sophisticated a connoisseur and with each subsequent daughter’s wedding friends likely enjoyed a better vintage. At his 60th birthday party, he impressed us all by correctly identifying in a blind taste test nearly every grape, region, and year… on his way to becoming that level 1 sommelier.

Incidentally, when he woke from his second surgery, we asked Dad if he needed anything. He looked at us with all seriousness but also a twinkle in his eye and said, “I know it’s not possible, but maybe a nice bourbon or a glass of pinot?”

Dad’s love of all things extended to food. Whether it was a high end steak, homemade meatloaf, or a pastry- and wow did that man love his bear claws– whatever it was he’d roll his eyes with pleasure and proclaim it the best. He loved dinners out and never passed up the opportunity to stop at Loughran’s Bar for a “quick bite” aka an update on the political scene.

His connoisseurship for all things nice extended to clothes and jewelry. We often joke (especially in our family with an Italian son-in-law) that while Dad may have been so proudly Irish, he sure wore his jewelry like an Italian. He was never without his UB class ring, wedding ring, claddagh, and MGF ring; and at least two bracelets and probably a few necklaces including his gold cross and the St Thomas doubloon. He believed in the meaning of these things and wore them all for a reason- to honor, protect, and celebrate.

Dad loved people. He never met a stranger- always found a way to connect through shared interests, humor, and wit. He was so compassionate and empathetic. But the thing that was most “dad” was that he knew someone everywhere. Literally, everywhere. His reputation and his relationships preceded him. No matter where we went there was a connection that resulted in a free round of golf or a bottle of wine at dinner or a behind-the-scenes tour. People went out of their way for dad because he went out of his way for them. 

Golf was a backdrop for Dad’s whole life. From caddying as a teen to achieving an excellent handicap and patiently coaching his sons in law out of a sand pit, he loved the game that challenged him and brought him together w friends, family and even occasionally famous golfers like Lee Travino, Tiger Woods and Arnold Palmer. He spoke with such joy about the times with his golfing buddies in their eponymous Derelict Open- for the past 30 years.

And Dad loved to party. Any excuse to be social, joke around, surround himself and share moments with friends. He walked into a room of people like a kid on Christmas. At my parents’ annual Kentucky Derby party, Dad made sure you always had a drink in hand. The ultimate parties for dad were the weddings. He officiated many a friends’ nuptials, and no one could cut a rug like him. As your dance partner he’d hold your hand up high in his dear way and press his scratchy cheek to yours and sweep your legs around the dance floor. Onlookers would say he tossed us about. He made you feel joyful and beautiful. We might bump into others but that didn’t matter- he owned that dance floor. I’ll never know a better dance partner. 

Dad was a voracious reader, a lover of bookstores, a history buff. There are not enough hands or fingers to count the number of trivial pursuit games in which dad had dozed off but woke up at just the right moment to shout out “the battle of the bulge” or some similar, arcane (yet correct) answer. And for all that knowledge, all that data, all those degrees and honors… He also held firmly to so many endearing beliefs that had little actual basis in fact. I remember dad urging us to unplug the hairdryer so we didn’t “burn the house down”… or reminding us to grab a sweater when it was 80° out because it was “pneumonia weather.” And my personal favorite- as I’d be heading down the stairs and out the door to a party- “don’t forget to eat some bread – it’ll soak up all the alcohol.” Words of wisdom, which were really always- and obviously- words of love.

Funny Guy

My dad’s disease has progressed to the point where treatment isn’t an option and he’s now in hospice care at home. It’s been a super sad and reflective time, but also surprisingly light and full of gratitude. I’m so impressed that this amazing man continues to show us his wit, his strength, and his love.

Yesterday as mom and I were trying to adjust him in his bed- which involves us lifting 180 lbs with a bedsheet- I look over at him and he’s got his hands in a prayer, like, “here we go…dear god, don’t let them drop me.” There was a slight twinkle in his eye.

And on Saturday as mom was trying to give him his medication, he was actively pursing his lips. I lovingly called him a “stubborn piece of shit” and he grinned.

And then when I was helping him change his shirt, I bumped his elbow on the bed rail and he rolled his eyes at me and smiled as if to say, “novice!”

I love that even without many comprehensible words his personality and wit are as fresh and quick as ever.

He knows what’s going on and he is sad at times, but he continues to thank us and express his love. Yesterday he was tapping his chest and I asked him what was going on, and he said “I’m celebrating.” And then the times I’m holding his hand- he does a little bunny nose twitch. I’ve realized that his nose itches but rather than separate from my hand to rub it, he just tries the wiggle.

My favorite thing, though, is how much he still appreciates his food. He’s not eating much but every time we give him something- whether chocolate ice cream or a lemonade- he rolls his eyes and says “wow!” Or “my god!” As if it’s the BEST THING HE’S EVER EATEN. His love, gratitude, and humor put everything in life in perspective.

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Humor in the New Normal

Dad is recovering from his third brain surgery in 18 months. it’s crazy to think how different things are now than a year and a half ago. Brain surgery then seemed like a big deal. Now it’s beginning to feel... rote.

I remember where I was when I heard; walking east on Taraval St. towards our house, the day after Thanksgiving 2017- a carefree family hike to the ocean and back. That was the day I learned he had cancer.

Fast forward to the present and he has already beat the average life expectancy for glioblastoma (average is 13 months after diagnosis). I think we were all starting to believe and behave as if he might be the exception to the rule. But then he started losing words and comprehension, and they found (and removed) another tumor in January and now again in May.

It’s hard to see this formidable man— this social, extroverted guy with the expansive vocabulary and the drive to succeed— struggle with communication. It even feels like a betrayal to write these words.

Friday’s surgery was as much of a success as it could be. He seems clearer, can speak in longer sentences, more “himself.” And his humor is back, a little. When my mom gave him his [small] cup of hospital ice cream, he started making jokes about it being perfect for a very tiny character and Hobbit references ensued.

As his family, we have also had to find humor in his condition. Which again, feels like a betrayal at first... until you realize that in the new normal, one still needs levity to balance the pain.

When he first woke from surgery, we asked him if he needed anything. He said, groggily but in all seriousness, “I know it’s not possible, but I’d love a nice bourbon or a glass of Pinot.” (Um, Dad- we we’re thinking more along the lines of a cup of water or a blanket....)

And then it was the fixation with his sinuses. Every time his neurosurgeon or nurse asked him how he was feeling, and he’d motion to his eyes and nose saying, “I’ve got some congestion here.” And we’d giggle, as he basically referenced the pain equivalent of a paper cut instead of his BRAIN SURGERY.

I guess that’s why they say laughter is the best medicine.

Two days post-op, with his grandson. 

Two days post-op, with his grandson. 

Beginning, Again

I’ve wanted to be a writer since I was a kid. Back then there were effusive journals and terrible poems and other miscellaneous surges of inspiration. And now in my 40’s I still want to be a writer when I grow up. 

In the past few days, I’ve written two blogs and started a few others. I’m getting more comfortable with this “Shitty First Draft” idea (if you aren’t familiar, it’s Anne Lamott’s acknowledgment of that messy version everyone must suffer through en route to a good piece of writing. Also, please please please read her book Bird by Bird. It’s on my Top Three Books Of All Times list and truly is not just an instructional for writing but for life).

I’m also just now starting to write for me- no one else. Though lets be clear, I’m quite thrilled you’re reading this, and I’m also nervous you won’t like it. But I’m more pleased with myself for taking a step towards my goals than I am anxious about your reaction. Yay, personal growth! One point for me.

It’s funny how— for years— I’ve had two hours each week set aside for writing. I’ve pictured sitting at a cute coffee shop (I can hear my husband now— “well, as long as it’s cute!”) with a nice almond milk latte, warm and comfortable clothes, my laptop, and the inspiration of community around me. Or in my living room; fireplace warm, a candle lit, glass of wine in hand, solitude.

In reality: I’ve used this designated “writing time” twice. In 2.5 years. Just to be clear that’s 2 out of approximately 130 Sundays. That’s right, I’m an overachiever.

Turns out not much was right about that mental picture of my writing space. What I really needed was a sterile hospital waiting room with terrible Wi-Fi and stiff blankets and mediocre coffee. And perhaps my sisters or family near me, reading— or perhaps no one around at all.

My personal learnings from this week are not complicated but they feel profound:

  1. Stop overthinking it. Just write. For yourself. Tell your story. From where you are now.
  2. Remove all comforts; it’s the discomfort that helps. Remove all preconceptions; it’s the conception that helps.

And so i’m beginning. Again.

The Night Nurse

It’s 6:45 am and Dad’s sleeping soundly, after having been up with some pain in the middle of the night. He’s recovering well, considering, you know, the brain surgery and all. It’s day three post-op; removal of a second Glioblastoma tumor. We await MRI and test results today to learn more.

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Yesterday morning was good- Dad seemed himself for the first time in a while. He was telling us about his night nurse and how “strict” she was as we filed into his ICU room; embellishing and entertaining us with a German accent and Quite Serious Nurse impersonation (“you vill pee now!” and “I vill give you shots ven I come back!”). The more we laughed the more Dad joked- such a gift. (Turns out the nurse was not only not German, but also just efficient and professional. Having grown up with a German grandmother and mother, Dad’s humor is especially dear).

But it made me realize again what makes Dad so... Dad. He’s focused first on the person- he wants to connect with you. He wants you to want to connect with him. He wants you to be happy, content, safe. He’s not listening to your words until he makes sure you are all of those things. If he can’t get a read on how you feel, well, then, apparently you become a strict [and German] night nurse.

Every time I leave the ICU he asks where my coat is- reminding me it’s freezing outside (yes, thanks Dad- we’re pretty aware of the 17 inches of snow, sub-zero temps, and state of emergency in buffalo).

When my sister grimaced and shifted positions in her chair (having hurt her back a few days ago), Dad stopped the entire conversation to make sure she was ok.

And after dinner last night, he asked us what we were going to have... for dinner. He’s not remembering our answers but is persistent in making sure we are comfortable and well-fed, from his hospital bed.

I remember being 17-ish and heading out for the night- the questions from mom were of the who/what/where variety and from Dad it was, “Do you have a coat? It’s pneumonia weather out there” and “Have you eaten? Have some bread, it will soak up all the alcohol.” (And also, “Do you have enough money? Here, take this just in case” as he slipped me a $20). Concern for your wellness, matched with just the right amounts of worry and love. 

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The sun has come up as I finish writing. Dad’s still sleeping. Hoping today is even better for him. And I’m eager to hear the stories of the Night Nurse when he wakes.

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The view from 8th floor ICU Waiting Room at Roswell Park Cancer Institute.