Last week I heard something so powerful on NPR that I had to pull over and write the words down.
From Journalist Maria Hinojosa:
One tool we have is our Humanity.
If you give Humanity, you will get it back.
Wow. This deeply resonated.
When I describe myself, one word that I frequently use is Authentic.
I strive to be Authentically Me in all situations, although the Authentic Me is often a Big Mess compared to the Carefully Curated Me that I could project.
Many people have commented that they are surprised about how open I have been with my cancer journey, but I can’t imagine being any other way.
I bring the same Authentic Me to my medical practice. Medical training teaches us some rudimentary interpersonal skills, but you really need to develop your own style, which loosely could be called your Bedside Manner.
My own Bedside Manner stems from a combination of personality, experience, time (20 years of being a physician – how did I get here?), and – now – my cancer experience.
But as I heard Maria Hinojosa’s words last week, a light bulb went off.
Humanity and Authenticity are nearly one and the same.
The times I feel I do best in life are when Humanity is seated at the table.
Even in difficult or tense situations – and trust me, I have plenty – showing your Authentic Human self almost always pays off. This can look many different ways, including being vulnerable, sharing a personal story, empathizing with the scenario at hand or acknowledging the elephant in the room.
Because at the end of the day, what I think we’re all striving for is to connect, be heard and hopefully understood.
Humanity is a powerful tool at our disposal to get there.
It’s not that it hasn’t written itself in my head; it has. I just couldn’t muster the will to put it out in the world.
Quick recap: January 3rd, 2021, marked my One Year Cancerversary from diagnosis.
I’ve been done with chemo since May 2020 and had my reconstruction surgery last August.
All along, I told everyone who would listen that “I’m doing great!”
And here’s the thing: at the time, I meant it.
Strength, wit and grit have gotten me pretty far in life and cancer was no different.
I jumped in head first to cancer treatment and at every turn, I took the harder path.
The dirty secret was that in the end, it didn’t *seem* too bad.
I took off less than 3 weeks for my bilateral mastectomy and 3 days for the reconstruction.
I barely scheduled any time off during chemo, minus the infusion day itself (and I even worked a half day leading up to my date with the IV drugs during one of them).
My energy was ok. I ate food. It didn’t taste great (Hello, metal mouth), but I managed to gain and not lose any weight (whomp, whomp). I exercised every day. I worked a lot. I was advised it was ok to go back into the clinic to see patients a month after finishing chemo so I went back one week BEFORE the final one (I’d worked virtually for two months at the height of lockdown in the spring).
And then, around October, it all caught up to me.
Cancer causes trauma. Period. Despite the strength I felt, and I genuinely do not think it was a front, a tsunami of grief flooded over me. I still can’t shake the PTSD.
My oncologist and other cancer survivors (yes, I am now tentatively calling myself a survivor) have told me that my experience is not unusual.
Diagnosis brings Go Mode, where it’s all adrenaline and fighting the beast. The treatment phase is Survival Mode, where you just need to do what it takes to get through it. But I am still figuring out the manual for Survivorship.
Post-cancer Me is different. I don’t want to go back to the old Me but I also don’t exactly want to stay like this.
On the plus side, I’ve got hair again and for the first time in my life, it’s CURLY. Like curly curly. I got it recently shaped on the back and sides (and was only charged for a men’s cut!) and the shape is approximating a pixie.
On the majorly negative side, I discovered that I am insulin resistant, aka pre-diabetic. My eyelashes are stubs and my brows – after a lifetime of Brooke Shields-esque unruliness – are ghosts of their former selves. The weight I managed to gain during chemo is stubbornly not coming off. I have an old person’s pillbox that is filled to capacity and every Sunday I painstakingly replenish the little AM and PM boxes for the upcoming week.
The Global Pandemic has kept me from doing something – anything – celebratory to mark the end of treatment (I had so many vacations planned!), which contributes to my feeling that the ending of the story remains unwritten.
I bought myself a pair of custom pink sapphire earrings with inverted, spikey stones and gold studs to commemorate (and never forget) the journey.
I immediately lost one, which is the most Me Thing that has probably ever happened.
Life is crawling back to some state of recognition.
I work full time.
I slather my eyebrows and eyelashes with an expensive growth serum and I think I am seeing progress.
I still overeat M&Ms on occasion.
Two things this week, though, sent me spiraling back to thoughts of dying – promptly – from cancer.
The first: Last weekend, I discovered a lump in my left armpit.
The left is my cancer side.
Trigger feelings of doom.
I am in a cancer group where the members regularly commiserate on post-cancer life, where every lump/bump/ache/pain immediately magnifies the tiny, constant worry that cancer has returned.
The lump is soft, mobile and slightly tender. All good signs for it being benign.
Rationally, I know it’s probably nothing. The most likely scenario is a slightly irritated lymph node from the friction sustained from my increased running.
But it nagged me all weekend.
Monday morning, I called my oncologist, just to be sure.
They took it very seriously and to my surprise, I found myself in her office less than two hours later.
I struggled to find the lump as she examined me (Good). It was not very impressive when I did (Good).
She decided to get imaging to be safe (Good plan), but the Worry Train had already left the station.
The second trigger: A song.
Specifically, “Our House,” by Madness.
This 80s tune brings back fond memories, although they’re from 2000, not 1983.
In the fall of 2000 I was a fourth year medical student, interviewing for OBGYN residency positions and traveling around the country for half of November and most of December.
In theory this is a stressful time, as getting into a good residency is a critical step for the future, the interviews can be intense with a lot of official and unofficial vetting going on, and most students (me) were traveling on borrowed student loan dollars and a shoestring budget.
I loved it.
Rushing to the airport, the red eye flights, the dodgy hotels, the pre-interview parties at resident’s homes, the early mornings, the tough questions – this is an environment in which I thrive.
I was so proud of my interview outfit. I had a charcoal gray skirt suit from Ann Taylor that I wore with a crystal blue silk turtleneck sweater and pearl stud earrings. I had the foresight to buy two sweaters so I could rotate them on trips with multiple interviews. I topped the look with a soft black trench from Talbot’s. At this point in my career I would dress for an interview with a lot more style, but at the time I felt like I’d found a respectable uniform.
I also had a soundtrack.
This was in the days of primitive file sharing, Napster and CDs. I had a mix CD – the late 1990s version of a mixed tape – that was filled with 80s and 90s hits, including “Our House.” I listened to that CD countless times in my travels and hearing the songs can send me right back to those moments.
Except yesterday, “Our House” sent me somewhere else.
The weather was perfect for a run yesterday afternoon, and my canine companion (Penny) and I were crossing the last bridge before home when this song came on.
The song reminisces about a happy childhood, yet these are the lyrics that got me:
“Father gets up late for work
Mother has to iron his shirt
Then she sends the kids to school
Sees them off with a small kiss
She’s the one they’re going to miss in lots of ways.”
She’s the one they’re going to miss in lots of ways.
I was flooded with thoughts about dying, loss and my children, and unfortunately, no amount of running seems to be able to tamp them down.
Survivorship is such a struggle, but I hope that I will continue to be a Survivor for a long, long time and eventually I will find peace with post-Cancer life.
Hopefully, the triggers will be fewer and farther between.
Last week Spouse and I were discussing the state of the world and its problems, and in our personal universe, Cancer now occupies the #3 spot on the Terrible/Awful List.
That’s how bad 2020 has been.
(If you’re curious, Racism and Global Pandemic “won” the top two).
I don’t think we’re unique in our opinion of 2020. Perhaps you feel the same.
The General Awfulness of 2020 has led me on a quest for meaning.
And I’m determined to figure it out. Here’s a place where I started:
This academic manuscript is old but remains relevant for 2020. Full text is available; the citation is above.
Ostensibly, it’s about cancer, but the messages can be applied to so much more.
Here’s an excerpt from the introduction:
According to theorists, human beings have a “will to meaning,” a fundamental need to seek meaning and fulfillment in life. Meaning has been equated with purpose in life, life satisfaction, and positively valued life goals. Others view meaning as a sense of purpose and coherence in one’s life, and awareness of the value, fragility, and preciousness of life, or the personal significance of a particular life circumstance … Reker has come closest to synthesizing these diverse conceptualizations by defining meaning as “the cognizance of order, coherence and purpose in one’s existence, the pursuit and attainment of worthwhile goals, and an accompanying sense of fulfillment.”
The authors also differentiate between Global and SituationalMeaning, using a framework described by Park and Folkman.
Of the two, Global Meaning is the bigger concept. It refers to “people’s basic goals and fundamental assumptions, beliefs and expectations about the world.” Examples of Global Meaning include an individual’s personal beliefs encompassing religion, spirituality and the order of the Universe; these ideas provide a philosophical structure for interpreting the world, adverse events and life purpose.
Situational Meaning is more personal: it’s the interaction of one’s global beliefs and the immediate circumstances of their life, i.e. where the Venn diagram overlaps.
After studying cancer survivors, the authors of the above study developed a Meaning in Life Scale composed of four elements:
Harmony and peace: Positive emotions and thoughts connoting a sense of tranquility, serenity and comfort
Life perspective, purpose and goals: This is the individualized meaning assigned to oneself and one’s own life. Optimism about the future is a common thread.
Confusion and lessened meaning: This is the bad one on the list, and hopefully this is a temporary state. Per the authors, this is “a decreased sense of value to life and a belief that life is a negative experience.” They go on to say that many cancer patients (read: human beings) experience periods of meaningfulness and also periods of meaninglessness.
Benefits of spirituality
For me, 2020 has provided more than ample opportunity to search for Meaning.
Perhaps you relate.
And while I don’t have any answers yet, I’m here to learn.
Today, exactly 16 days after finishing my last scheduled chemotherapy, I had my first cancer survivorship appointment.
I am so uncomfortable with that label.
It feels too bold. Unearned. Risky.
How dare I tempt the Fates?
The discomfort is gnawing and visceral.
But having comfort with discomfort is something I’ve practiced for a long time.
(Apologies in advance if you’ve ever been a student/resident/fellow who trained with me. You already know what I’m going to say).
Most people know that medical training involves a hierarchical model of learning. You start with easier procedures and gradually tackle those requiring more skill and responsibility.
By the time you finish residency and/or fellowship, you’ve spent anywhere from three to seven years climbing this pyramid, enough time to gain a level of confidence and expertise to know you can successfully complete the most complex tasks.
For OBGYNs, a classic example of this is a c-section. At minimum, two people are needed for a c-section, one to be the primary surgeon and one to assist. They stand on opposite sides of the patient and work simultaneously. For right handed surgeons, working from the patient’s right side gives you better access to the pelvis with your dominant hand, a mechanical advantage that comes in handy when you need to reach into the pelvis and safely deliver the baby’s head. Thus, when you’re learning to do a c-section, it’s much easier to be on the patient’s right side than the left. At the start of residency you’re always positioned on the right and at some point you become skilled enough to graduate to the other side of the table.
The thing about residency, however, is that even when you’re confidently leading from the left, there’s always – ALWAYS! – someone more responsible than you are. The attending physician (a.k.a. your professor) may not be physically in the operating room, but theirs is the ultimate responsibility for this surgical outcome, because at the end of the day you’re still a student.
The other thing you may know about medical training is that every June 30th, there is a magical turning of the calendar page and suddenly, everyone gets advanced one year. When it’s your turn to graduate, the buck now stops with you.
3 A.M., July 16th, 2005: The buck stopped with me. I was a newly minted fellow on overnight labor and delivery call, doing a c-section with a second year resident. I was confidently leading from the left and everything was going fine, but I recall a sharp moment of clarity when I realized that holy cow, I was the attending, the only attending, and no one was secretly standing by to swoop in and save me if I got into trouble.
The discomfort of that knowledge was gnawing and visceral.
Eventually, though, (and by “eventually” I mean years), I garnered enough experience, learning and growth to develop a level of comfort with discomfort.
What this is:
Confidence you can do the work
Confidence you can be successful
Confidence you can do hard things and then do more
Confidence that sometimes things will not go your way and you will need help, and that is ok
Confidence that you will be ok
June 4th, 2020: I find myself once again trying to find comfort with discomfort.
Cancer survivorship isn’t my only discomfort of 2020.
The social injustice and systemic racism unveiled after the murder of George Floyd in Minneapolis – where I live – presents a profound opportunity for reflection, action and personal development.
Eventually, though, (and by “eventually” this time I mean the rest of my life), I hope to garner enough experience, learning and growth to develop a level of comfort with the discomforts of 2020.
Spoiler: The anticipation is worse than the event itself.
Let’s start at the beginning: This picture was an above average hair day when I still had hair.
I’ve never been motivated nor skilled at styling my hair. Pictures of me dating back 25 years will show straight blond hair in various lengths from chin to shoulder.
I had a look.
Not saying it was a particularly good look, it was just the least-common-denominator style that got me through.
In retrospect, I should have mixed it up a lot more when I had the chance.
I had an elaborate plan after my first chemotherapy treatment. I would go to my long-time stylist and have her cut my hair into a chic short cut, then return a second time for an extremely close crop once the hair loss started in earnest. She was also going to help me find and style a wig.
Sidenote: Did you know a wig may be covered by insurance? Yes, you can obtain a prescription for a head prosthesis. Given that wigs range wildly in cost – ones with real hair can be over a thousand dollars – a prescription would come in handy.
While chemotherapy protocols vary, the side effects of mine (which I’d read, oh, at least a million times) indicated that hair loss would occur 12-14 days after the first dose.
And then, with one global pandemic, my careful plans fell apart.
Eight days after my first treatment, I started to notice some hair loss at my temples.
I decided to take step one and cut my hair myself.
I sectioned my hair into ponytails for easier cutting and put on lipstick for courage.
The end result was not perfect. This is likely my first and last foray into home barbering.
^^^ I measured, and this was also nearly three years of estimated growth.
This is what it mostly looked like during the week I had that cut.
This picture is also the last day I had hair.
Here’s the timeline:
Eight days after chemo: Self-Administered short cut
Twelve days after chemo: Hair loss started in earnest. Tugging at a small clump of hair was enough to pull some, but not all, out.
Also day twelve: I ordered a wig online. This was neither the planned nor recommended procedure, but the Coronavirus pandemic meant that my stylist’s advice and the local wig stores were not available. Furthermore, I did not get to use my head prosthesis prescription and had to pay out of pocket (~$300).
Days 13-17 after chemo: I joked that I was like a dandelion in the wind. The slightest brush or pull would result in a large clump of hair coming out. Zoom calls with patients, staff, friends and everyone else were starting in earnest and I was really concerned because my wig had not arrived, and I was quickly running out of options. I stopped brushing and washing my hair. To do so would have resulted in tremendous loss at once.
Evening, Day 17: I couldn’t go on like this any longer, wig or not. My dirty short hair was becoming matted and the loss just escalated. When the hair came out, the roots looked totally desiccated, like hair that had been burned. I didn’t torture myself with this activity, but I wager that I could have pulled out half or more of what was on my head with little effort. I asked my husband to use his old sideburn trimming clippers to shave my head.
When the time finally came to get my head shaved, it was more functional and less emotional than I thought it would be. I’d already pre-mourned my hair loss so much in the previous weeks and months that the act felt like a relief. Finally.
A few surprising pieces of information emerged: the first was that while my natural hair color – which I have not seen in a long, long time – was a boring dishwater blond, it was much less gray than I thought it would be. The second is that a bristly head is extremely itchy.
Fortuitously, my wig arrived the evening that I shaved my head. This felt like Divine intervention, the universe giving me a tiny bit back.
My daughter told me that my wig looked like American Girl Doll hair. She is 100% correct.
I don’t enjoy wearing my wig. Most of the time it rests in my closet on an improvised stand, a Nambe vase that I got as a wedding gift.
You can also see in the above picture that I have sorted out piles and piles of scarves to wear on my head. I have watched a lot of YouTube videos on how to style a head scarf.
As of this writing, I’ve been (mostly) bald for about two weeks. I also completed my second chemotherapy session (#2 of 4) during this interval, so in theory, I am halfway done with active treatment.
Internally, I generally feel the same. While I have had some side effects to the chemo, I am grateful that overall I have been doing very well.
There are moments where I catch my reflection and gasp. Who is this?
My eyebrows and eyelashes are also getting into the Falling Out game, which just adds to the overall look.
When I was young, my grandparents lived on a farm whose water supply came from a well.
There was an old-fashioned pump like the one pictured above in their yard, and I delighted in pumping the handle to get the water to pour out.
The water had a specific taste: sharp and mineral. It was always icy cold.
Adding to its flavor profile was the glass that my grandmother kept – for years – turned upside down on the top the pump:
If you’re not old enough to recognize these, they are 1970s (? earlier?) aluminum tumblers.
I am sure they were manufactured with ALL badness and that there is not a small chance that cumulative environmental toxicity from things just like this contributed to my cancer diagnosis. However, the point here is that drinking from these tumblers produced a very specific mouthfeel, which was an unpleasant metallic taste and sensation that was coming at you from all directions. Adding these qualities to the minerality of the well water produced a drinking situation that was usually reserved for only the thirstiest scenarios.
Fast forward to now: this well water + aluminum tumbler combo is a reality I cannot escape.
An omnipresent metallic taste is an extremely common side effect from chemotherapy and up to this point, it’s the one I am experiencing the most.
And it won’t go away. Coffee is metal. Carrots are metal. Toothpaste is metal. Water is metal. Even air is metal as I breathe it in.
I consider myself lucky. Things could – and probably will – get worse.
Over the weekend I had a concerning episode that, once over, required me to replace a lot of fluids. I was worried that I wouldn’t be able to do it myself and would need to go to an ER or urgent care for IV fluids. Fingers crossed, I have been able to get by on my own.
And as time goes on, I am becoming increasingly scared of COVID-19 infection.
There will hopefully be more time to expand on this, but in summary, I have not left the house save for walking the dog for the past several days.
How do we keep going in a time of unprecedented uncertainty?
As you know, my own situation is layered with the fact that I was recently diagnosed with breast cancer and am undergoing chemotherapy. As the side effects of cancer treatment take hold, I add to them the very real worries of Coronoavirus infection to my immunocompromised body. I do not wish this burden to anyone.
But I worry less about myself than others: patients, our dear employees, my loved ones – many people fall into more than one of these groups – and we are all living with heavy burdens.
My heart hurts.
My brain hurts.
My body hurts.
Fertility treatment is literally on hold. We have been directed by the American Society of Reproductive Medicine and the Minnesota governor through a direct order that we must stop treatment. I will get into it later on whether fertility treatment is elective (it is not in my opinion), but our hands are tied. We can’t even do procedures that involve gloves. This effectively rules out almost everything we can do to help our patients build their families.
Super vulnerable: This morning I was feeling particularly hopeless. This is very unlike me; I am generally an optimistic person. I made a list of things I could not control. It was bleak.
I cannot control that there is a global pandemic. I cannot control that I have cancer. I cannot control that my life’s work and purpose have been – temporarily – taken away with an uncertain timeline to resume. I cannot control that patients whose own fertility timeline is limited are being forced to put their lives on hold. I cannot make this virus go away and get our lives back to normal.
And then I made a list of what I can control.
I can write in my gratitude journal every day; today’s entry was that I was safe for one more day. I can be present. I can show love to my family and pet. I can be kind. I can maintain relationships. I can eat nutritious foods when I am able due to my cancer side effects. I can hydrate as I am able. I can walk outside – alone – when energy allows. I can think and reflect. I can follow isolation guidelines to minimize my risk of infection. I can not give up hope.
And I can plan. Normally I do not have the luxury of time to think; I just do. Now I can plan. How to do better and be better. How to be a better physician, colleague, partner, parent, friend and human. As myself how I can help patients NOW. We may not be doing embryo transfers this week, but we will be back. And I can plan and be ready. We are finding ways to stay on top of the changing landscape and be able to nimbly slide back into our mission and work, only better.
^^^ Wore some mantra bands – all gifts – for luck and courage. Seemed to work!
If you’re curious, here’s how my first chemotherapy session went on Tuesday.
My check-in time was 12:45. I squeezed quite a bit into the first half of the day before chemo started.
I had a baseline bone density test (DXA scan) scheduled in the early morning. This will periodically be used to monitor me for osteoporosis, which I am now at greater risk for developing from the cancer treatment and its side effects. This was quick (10 mins) and painless. The technician performing the scan was making small talk and asked what I was planning to do the rest of the day. Me (brightly): “Getting chemo!” Her: Silence.
And once again, cancer becomes the ultimate conversational mic drop.
She mentioned one interesting thing to me, namely that I was the last patient on their schedule. Because of Coronavirus, they were stopping all bone density testing and routine mammograms. This got my attention. As I’ve mentioned, my cancer was detected when a routine, on time, mammogram in December 2019 showed a change from exactly one year earlier.
Have you ever delayed a screening test because you forgot or didn’t have time? I have.
This led me to think: what if I’d not scheduled that mammogram on time? Maybe I’d remember in January or February and would have been one of those patients getting deferred for now. By the time the restrictions are lifted and the backlog of patients is accommodated, I could easily envision a scenario where my “routine,” no rush mammogram was pushed to May. That would have permitted my cancer to linger, fester, grow and potentially spread for nearly SIX Months. I shudder to think of this.
After the bone scan, I went to work. We are navigating the Coronavirus and wow! It’s dizzying to keep up with recommendations for patient and staff safety. This is far from over.
I left work a little later than I’d planned but with almost zero traffic, I crossed the metro with ease.
After checking in, I had labs drawn. The immediate concern is to see if my immune system is strong enough to get chemo. It was, although that’s not surprising since this is my first treatment and haven’t had the drugs yet.
I had a brief but pleasant appointment with one of the providers on my team and she signed off on the orders to go through with the chemo.
I was led to the infusion room, which was sunny and warm. I picked a chair by the window. I would describe the chairs as being like functional airport seats, definitely not as nice as a massage chair at a fancy nail salon, but not terrible. I mention this because that chair was my home all afternoon. They offered me a blanket or pillow but I declined.
Because of the Coronavirus risk, they staff was also clear that there were absolutely no visitors allowed in the infusion room. I was secretly so happy about this! I envisioned large extended families in matching t-shirts all crowding around Great Grandma to keep her company and support her during chemo. Looking around today, there were definitely some candidates for this scenario but the room was blissfully quiet. Spouse and I had a debate on whether he should accompany me. I said no; it didn’t seem purposeful to have him ruin his afternoon waiting around. Turns out, I was right. It was kind of boring.
^^^ My eyes look a little red, which is weird because this is one of the few days I did not cry.
After getting an IV placed and re-applying lipstick, the infusions started.
First up: two pre-medications to prevent/abate side effects (they both combat nausea) from the other “real” drugs. These each took about 20 minutes and were given one at a time.
Next up: Docetaxel. This is chemo drug #1. It took a little over an hour to slowly drip in. I was given warning signs about potential allergic type reactions that could happen but I was fine.
Finally: Cyclophosphamide. This is chemo drug #2. This can be given in as little as 30 minutes but the kind infusion nurse helping me today said that some patients have sinus pain (? weird?) and giving it over 40 minutes reduced that symptom, so she liked to follow the slower route.
While I was getting the infusions, I read the newspaper, listened to two podcasts, transitioned to music and read a magazine. Their internet was spotty so I couldn’t download the new book I had pre-ordered that became available today. Mental note for next time: download in advance.
When the medicines were completed, I had one more thing to do: I got an automated medication delivery device – it looks like a case for AirPods – attached to the skin of my abdomen. This device is filled with a medication designed to boost my immune system and is set to automatically inject me tomorrow night. One it deploys, I can peel it off.
Total time for this adventure was just over four hours. I felt fine afterwards and was able to drive myself home, and then go for a social distancing approved walk outside with Spouse, Trixie and our dog.
While this was a straightforward experience, I also know it is early. This was cycle #1 of 4, and effects are cumulative. Side effects also don’t kick in immediately, for example, my appetite is low but real nausea doesn’t kick in for 6-10 hours. Immunosuppression starts about a week out and peaks (actually, nadirs) at two weeks, then (hopefully) recovers by the third week – at which time the cycle starts again.
I write posts when I’ve got something to say and a (little) time to do it.
Some I schedule to post in advance, usually within a few days.
Looking through some of the most recently posted – but not necessarily written – it’s striking how much everything changed so quickly in our world due to the unprecedented global pandemic we are experiencing.
There’s never a good time to do chemotherapy, but starting today feels particularly scary.
After some deliberation, this is what I chose to wear.
The irony of the message on the t-shirt isn’t lost on me, and I am not wearing this to be snarky.
There is so little I can control now.
I can’t control cancer.
I can’t control Coronavirus.
I can’t control my immune system.
I can’t control the calendar, fast forwarding several months to a time that is better, more convenient or less risky.
I can control my attitude.
So I will choose to believe that this day is the start of the next phase, one that will hopefully get me closer to being whole again.