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

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

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. 

Togetherness: In the Waiting Room

Coffee cups, glasses cases. Crumpled napkins and half-drunk water bottles. Comfy socks and books and... us. Here, together.

#####

I was just in Buffalo last week. Here to be with mom and dad and for the kids to get special time with them. When we landed home in SF, Oliver bawled. He loves his grandparents so fiercely. He loves them with the force of a million loves. He loves them so much that he secretly wrote this note the next morning en route to school:

“Grandma and Grandpa, I really miss playing all those games with you, and the nerf, and the cheese, and the movies, and the gym, and Sear, and Niagara On The Lake, and the brownies, and the snow, the banana bread, and going to buy stuff, and the sno…

“Grandma and Grandpa, I really miss playing all those games with you, and the nerf, and the cheese, and the movies, and the gym, and Sear, and Niagara On The Lake, and the brownies, and the snow, the banana bread, and going to buy stuff, and the snoball fight, and the thing for the sled, but most of all I miss...”

“... YOU. I love you GUYS A LOT! I love you, love Oli [sad face]” 

“... YOU. I love you GUYS A LOT! I love you, love Oli [sad face]” 

When we landed in SF I got the text from mom, “please call me when you can.” And I knew; the MRI results were bad. Dad had been more confused, losing words and conversation threads. They found another tumor and significant brain swelling. Surgery would be scheduled asap.

And so I’m back. Buffalo didn’t get any warmer in the last 5 days. But it’s warm here, in this space, with these people. My people. My brother in law said it well- my family knows how to rally. I couldn’t imagine it any other way; there’s no world in which I’m not here. So we’re here in togetherness, waiting.

#####

Watching her face is hard.  She nods, expression intent, neutral. We hang on every word, every mouth or eye movement, for a clue. “Ok,” she nods, “thank you.” She hangs up; all is well and they are nearing the end of his surgery. Mom is strong and fragile at the same time.

Meanwhile the emails keep coming in. Prayers and thoughts. Offers of support. The kindness of friends and family is overwhelming in the best way. 

And so we wait. In the Waiting Room. We drink our coffee, we remove our glasses to wipe a tear. We eat and share silly cat videos. We discuss topics like fear and belief. And we read; solitude in togetherness.

 #####

Update: Dad’s surgery went well. He’s in recovery for the next few days. More waiting, but it’s grateful waiting.

My Turf Top Ten

So... Turf  is on my mind. I’m a little obsessed (which makes sense when you hear the full name of this app... "Turf: Outdoor Addiction"). Here’s why you too might consider giving it a try:

10. On average, I’m happily clocking an additional 5,000-10,000 steps per day on Turf. 

9. It’s outdoors, its active, and though it uses tech, that’s not the focus at all. You can Turf by running, walking, and biking.

8. I now have a “destination” or a “reason”  for my workout. Makes me feel quite accomplished- for the workout itself AND the zones taken.

7. It’s creating community among players; for me, that's encouraging fun activity and conversation with my coworkers. 

6. I'm seeing parts of the city I’ve never seen before; intriguing nooks & crannies, special places, and new views. Everything from witnessing a red tailed hawk swoop down on its prey to hearing the Accordion Guy at the Palace of Fine Arts. It’s not your same old treadmill run or even your usual outdoor loop.

5. It’s something healthy and competitive to do, even with just 10-15 minutes of free time.

4. Though competitive, it’s also collaborative; the exchange of zones between players (aka “taking a zone”) is necessary for everyone to gain more points. Friendly competition, what’s better than that?

3. It’s a fun (and cheap & cheerful) thing to do with the kiddos. For them, it’s better than a hike (my son says it’s a great “trick” to liking hiking).

2. Ok, maybe I only have 9 reasons, but...

1. It makes me happy. Try it! 

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Those Who Wander

“Not all those who wander are lost.” -J.R.R. Tolkien

(A few of my August wanderings, while playing Turf).

A fresh pair of Hokas and a spring in my step, a solid podcast choice, a new route. Today I saw the Sunset [district] from a new angle. It’s surprising to me after 20 years in SF. And that’s been the case with the rest of the city; how lovely and lucky to have an excuse to see and see again. 

You’ll Want To Try This: Turf Game

Calling all outdoors lovers, early adopters, and anyone who enjoys a healthy dose of fun and competition. You’ll want to try this.

Two years ago, at the suggestion of my brother- and sister-in-law, I joined Turf. My in-laws live in Stockholm, where the Turf app is extremely popular. There are thousands of users getting outdoors and playing this game every day in Sweden and the neighboring countries. While we were in Stockholm, I started playing as a way to see the city.

For the past two years I’ve only been able to play the game locally (in SF) against Swedish Turfers who happen to be visiting San Francisco. As of this week, however, the Turf Crew has made magic happen and the Turf app is available in the US App Store (thank you Turf Crew! You rock!) at www.turfgame.com 

So far, I’ve convinced my husband and a few game coworkers (pun intended) to give it a try... and the past two days have been SO. MUCH. FUN. I’ve always been an outdoors person; I love trail running, hiking, even walking in my neighborhood for fresh air, exercise, and the time to myself or with friends. But Turf has encouraged me (I’d even say incentivized me) to take quick 5-10 minute breaks to “take a zone” and come back to work refreshed and delighted. (Sidenote: I never use the term “delighted.” But this is just that – delightful.)

Ok- so what does this even mean- to “take a zone?“ A zone is a small area, perhaps 25‘ x 25‘, and when you step into that location you are “taking a zone.” By taking a zone, you “own” that zone (albeit temporarily) and are allocated points accordingly. If you take a “neutral” zone— one that has not been taken by any other “Turfer” yet— you’ll receive a 50 point “neutral bonus.” In addition, some zones allocate a point per hour gain, for as long as you hold the zone. And that’s where the fun comes in – people can steal your zones. Other Turfers are also competing with you for points, number of zones, and medals. Medals can be earned for all sorts of different reasons, like taking a bridge or aquatic zone, or holding onto a number of zones at the same time.

As with anything new, it’s easier to understand through experience than through someone’s description.* But when asked why I play Turf, I share that I’ve been logging at least 5,000 extra steps per day all week (now that I have some local competition in this game!). It’s also just plain fun, competitive in the right way, and incentive to be healthier. Some people ask if it’s like Pokémon Go. Maybe...ish? While I’m not personally interested in catching an imaginary animal, I’m obsessed and delighted (!!!) to take zones. There’s a reason it’s called Turf: Outdoor Addiction. So download the Turf app and give it a try. See you out there, Future Turfers! Lycka till!**

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*I’ll continue to post some information in the next week on how to Turf, including a rudimentary tutorial, and more on all those fun little symbols on the bottom right of your turf app.

* *Good luck! (In Swedish)

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Turf in Sweden: yellow dots are neutral zones, red dots are zones taken by a Turfer. Over the course of a round, turfers try to gain as many points and zones as possible. When a round ends, winners are announced and points/zones are reset for the next round. 

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The Bay Area has quite a few zones. The green person is “me” and green dots are the zones I’ve taken. Red dots are other Turfers who have taken zones.

 

It takes approximately 30 seconds to take a zone (so you have to be standing still in that area). After taking a zone, the area is blocked to other Turfers for a short while. The longer you play, the greater your “blockage time” and the lesser your …

It takes approximately 30 seconds to take a zone (so you have to be standing still in that area). After taking a zone, the area is blocked to other Turfers for a short while. The longer you play, the greater your “blockage time” and the lesser your “takeover time.”

Food Allergies: Not a Joke, Peter Rabbit

As a food allergy parent, I don’t love seeing a life-threatening disability being the brunt of a joke. However, I can handle (or even appreciate) jokes if they’re accompanied by intentional lesson-learning or responsible use of media influence. Sony has done neither of those things in the new Peter Rabbit movie, and instead perpetuates misconceptions and miseducation about food allergies and anaphylaxis.

As noted by Kids with Food Allergies (a division of Asthma and Allergy foundation of America) a character in the movie is intentionally attacked using his allergen (food allergy bullying), goes into anaphylaxis (a serious allergic reaction that is rapid in onset and may cause death) and requires epinephrine (a short-term, rapid medication but it is not long-lasting- buying time until medical help is sought). After his “epi-pen” is administered the character continues as if fine, instead of being rushed to the emergency room for additional medications/monitoring as would happen in real life. There’s also a scene in which they state, “everyone has allergies nowadays,” implying that allergies are exaggerated or overstated. Or worse, a choice.

If you’re thinking, “Those food allergy parents and kids are such special snowflakes” then I think you’re missing a piece of information. This isn’t a choice, and it’s not an exaggeration. We don’t wish to have this disability in our lives. But we do, and precaution and education are our best friends. Our greatest fear is not actually the food allergy itself – it’s people who don’t understand the food allergy and therefore endanger the lives of our kids. YOU are our greatest fear.

If you’re thinking, “ these people should just relax, it’s not such a big deal” then I ask, why are you so worried about what we are worried about? If it doesn’t affect you, stay silent. It’s OK to not contribute your opinion if you’re not affected.

If you’re thinking, “it’s just a joke, where’s your sense of humor?” consider that triggering past traumatic incidents— whether for the child or the parent who has experienced the near-loss— is never funny. Making light of something serious trivializes its importance.

If you’re thinking, “wow, everybody has to be so PC these days” know that it’s not about being correct, it’s about being kind. It’s about the underlying intent; is it to hurt? Or is it to help? Sony, or any organization in a position of influence, should use their influence to help.

And, lastly, If you’re thinking, “she’s so over the top with this allergy stuff,” consider this- I used to be you. I was once someone who thought other people’s allergies were annoying or over the top. And then I was blessed with a food-allergic kid. It’s made me a much more empathetic person. No joke. 

Further Reflections on Anaphylaxis

This past week has been a blur; a swirl of emotions and learnings. On Sunday, Colten (my older son) had an anaphylactic reaction (he's fine now- read previous blog post) and I've been so grateful for the support of family, friends and even friends-of-friends in the wake of the incident.

The biggest thing I've come to realize on a very personal level is 1) I'm so glad for all our preparation and 2) there is a difference between theoretical preparation and practice and in-the-moment, crisis management. I know this well in my professional life, but it's different when it's your child... a piece of your heart.

So I'm driven to extract as much learning as I can from the situation. I'm currently reading Adam Grant's "Originals" and really identify with the "defensive pessimism" he illuminates- deliberately utilizing/thinking about an emergency scenario in order to consider the worst case possibilities, drilling into all aspects in order to avoid disaster.

Here's what has emerged in sharing my story with friends and family- additional ideas and reflections:

1. "Find My IPhone" is Your Friend

We had this function enabled on Colten's phone, but didn't think to use it to locate him. What a stress-reducer that would have been as my husband combed the Golden Gate Bridge for our child in an emergency. And in general, a good thing to remember as he gains independence in his teen years.

2.  Never Too Soon for the Epi-Pen

I'm not a medical professional, and I'm not giving medical advice- I'm sharing what I have learned. The doctor in our emergency room clearly reinforced for us to use the epi-pen at the first signs of anaphylaxis, (even if you're wondering if this is the right time). Not to wait for additional signs. The last thing I want is to wish I had used it or used it earlier. The side effects of epinephrine are preferable to the alternative.

3. More Diligence Around Ingredients

Colten asked if the cookie had nuts, and the adult with him called the friend she bought them from, whose daughter was the baker. The answer was "no, no nuts" however the cookies had been mislabeled. It's making us rethink our family "rules" regarding ingredient questions; what kind of labels we trust, and/or how we communicate the repercussions of our allergy ingredient questions to those who are less familiar with food allergies.

4. Find a Teen Food Allergy Support Group

We've talked with Colten a lot about his allergies. However it seems more obvious to me now that he needs to talk with peers who have experienced this, and who understand from a first-hand perspective. We'll be looking into this in the coming month to see if something exists near us.

Here's to sharing learnings... onward, Allergy friends!

A Scary Day in the Life with Food Allergies

I'm passionate about food allergy awareness- I just had new awareness yesterday. Sharing this [very long] story in the hopes that it helps others as well.

I consider myself and my family extremely well-educated regarding food allergies. Even so- yesterday, Colten had an anaphylactic reaction; his first since he was 1yr old. He's ok now, but it was hands-down the scariest day of our lives.

On a Boy Scout hike with his patrol group, he walked across the Golden Gate Bridge. They all had a cookie to celebrate their success. Colten asked if it had nuts and was told no... it turns out we later confirmed there was walnut in the cookie. There are a number of things that went right and went wrong from this point on.

Colten called us and left a message to say he ate a cookie and his throat was itchy. We didn't hear the phone since we were at an event. Matt picked up the message a little later, called back- but no answer. He immediately started driving to the bridge and I headed to the hike meeting location.

Along the way, neither of us could reach him nor did we know exactly where he was along the hike. I was texting him "Colten are you ok/ Colten take your epi-pen/ Colten have a grown-up call 911." Still no reply. I tried another mom whose son was on the hike. No reply. I called 911 and started to let them know that my son might be having a reaction- and got a call from Matt that Colten was ok. I hung up with 911. A minute later, Matt called back- Colten had thrown up (second symptom, confirming anaphylaxis) and he'd instructed Colten to use his epi-pen. I called 911 again, staying on the phone (through the operator asking "what street is Golden Gate Bridge on?" Really?)

Arriving at the GGB Welcome Center, there were thousands of people- it was a sunny, 70 degree day in SF. Tourists everywhere. I'm screaming his name... I finally spotted them and ran over, with 911 arriving a few minutes later. In the ambulance, they set an IV, administered more meds, and monitored him. Seeing him stable, I finally took a deep breath. At the emergency room he had more steroids and fluids to prevent an allergic rebound (a second reaction that can occur when the epinephrine wears off). He was released a few hours later from the hospital- all is ok.

The most important thing about the day was that Colten carried his epi-pen. I can't stress that enough- it saved his life. Everyone (EMTs, ER staff) gave him huge props for carrying it on him- I was surprised (seems like a "given" to me) but apparently most anaphylactic patients in the ER either don't carry it on them, or had it but didn't use it. We were also very lucky that the adult with him helped to administer the epi-pen (he was too scared and unsure). Also, Colten called us when he first felt an itchy throat, giving us time to get to him and call 911. Lastly, when in the Presidio in San Francisco, I know to call 415-561-5656 from a cell phone for emergency services, not actually "911" unless from a landline (those calls go to CHP).

That said, there are some things we'll do differently moving forward. Colten called us once, but he didn't know to keep calling us until we picked up- he now knows that. Also, while he suspected it was a reaction, he didn't know that the "super itchy throat" was the beginning of anaphylaxis. He took some Benadryl- which is a step that gets mixed reviews- it slows the reaction but it can also mask anaphylaxis (making you think you're ok).

Also, we as parents have been very reliant on Colten now having a cell phone. And our tween/teen has been so independent and mature lately- we didn't get phone numbers of others on the hike. That's a mistake we won't make again. Knowing your child is in a life or death situation and not being able to reach him ("sorry I didn't pick up mom, but it was so loud on the bridge") is not a feeling I want to relive. In my mind I replayed allergy horror stories I've recently read, over and over.

In debriefing, Colten has also recognized another symptom he had at that time. He felt "worried" (which isn't an unusual feeling for him- but in this case, was likely a symptom- many say they feel "weird" or "like something bad is happening" during anaphylaxis).

He's fine now- happily granted screen time last night to rest and recover. He's headed to the Allergist today for a follow up appointment. We are lucky and blessed.