“Cancel Everything”

This article in The Atlantic is getting a lot of (well-deserved) attention.

The link is above and it’s well worth your time to read it.

As someone who is currently undergoing cancer treatment – a.k.a. a high-risk, immunocompromised individual – I feel strongly about taking pro-active measures to keep society – and myself – safe.

Our long-anticipated spring break cruise?

Canceled.

While it was not a hard decision for our family to make, I am still part of a social media group of fellow cruisers who are still planning to embark as scheduled.

It’s disappointing to see so many comments along the lines of “Whoo-hoo! Less people at the buffet!” or “Free upgrades for everyone!”

The most dangerous fallacy, I believe, is this: “But I’m healthy.”

Up until recently, so was I.

I practice a very niche area of medicine and for the most part, I don’t have a high patient volume nor are most of my patients extremely ill.

But think about other medical specialties like geriatricians, ER physicians, oncologists, critical care physicians, etc. There are many specialties where patient acuity and volume are both high. Some fellow OBGYNs I know routinely see up to 40 patients a day.

So, even if you are a healthy individual, an infected-but-asymptomatic (or incubating) health care provider could easily be a point of contact for dozens of really sick people every day.

Patients who are seeking care for one illness may be put at risk for acquiring another.

This could get bad very quickly, and likely will.

I agree with many of my colleagues that health care providers, and especially physicians, should lead the way as role models as we wade through the Coronavirus pandemic.

Hopefully some of the residual cruisers will also get the memo, although as we’ve seen recently, even if they don’t, their vacation may get an unwanted 14 day extension in quarantine.

The Gray Zone

Late last week I got a result I’d been waiting for: my Oncotype report.

Oncotype DX is a test that can be done on certain tumors (breast, colon, prostate) to determine whether an individual patient would benefit from chemotherapy and calculates the risk of recurrence for this unique tumor.

Multiple cancer-related genes are analyzed, data are crunched and the end result is a score from 0-100. This is one test you want to fail, i.e. the lower the score, the better. From the company’s website: “A low score means the cancer has a lower chance of returning and you have a lower chance of benefiting from chemotherapy. A high score means the cancer has a higher chance of returning and you have a higher chance of benefiting from chemotherapy.”

Nearly a million women with breast cancer have undergone this test.

Now including me.

One benefit that the company touts is that for women with a low score, they may be able to avoid chemotherapy. One report said that without an Oncotype score, many women (25%) with clinically high risk tumors may be given chemotherapy when it may not be necessary.

Let me state that another way: prior to the availability of the Oncotype test, oncologists made decisions on chemotherapy based on tumor characteristics, including overall stage as well as several nuanced factors, including hormone receptor status and a given patient’s age and overall health status. After the Oncotype became available, some oncologists began heavily factoring the score when making treatment decisions.

When I met with my oncologist, she drew a chart with the pros and cons of my case. Pros included favorable receptors (my cancer is estrogen and progesterone receptor positive and HER-2 negative, which means it may respond well to hormone blocking pills, which are different from traditional chemotherapy), negative surgical margins (meaning there wasn’t evidence of cancer left behind after surgery), and no detectable spread to nearby lymph nodes. Good, good, good.

On the con side, my tumor is aggressive (grade 3/3), and while they cannot prove spread, there was evidence that the tumor was trying to break out of its localized area (there was lymphovascular invasion). Bad, bad.

And then there are the matters of my age and health. I’m not sure if these are pros or cons, but my age is relatively young for breast cancer (47) and my health is excellent, which – fortunately – means that without this diagnosis, I would be predicted to have a lot of life left to live. Because I want to keep it that way, it may also tip the balance toward aggressively treating the cancer and allowing me to get back to the business of living that life.

At the end of the visit with the oncologist, the pro/con chart was split down the middle.

She decided to get the Oncotype report before making a final recommendation.

I told her that if she was on the fence, my bias would be to get the chemo. I don’t want to be sitting in her office five years from now, wishing I had done the chemo early on. Regret management rears its head again.

The report came back last week.

I am not going to disclose the actual number because I don’t want to get into a debate with anyone or enter into a whose-cancer-is-worse/better situation, but suffice it to say, my score was low.

This was surprisingly good and unexpected news. Using the score alone, I might fall into that “overtreated” chemo group.

But yet.

Without that score, I would be considered “clinically high risk” and would get chemo.

And while I like to consider myself extremely evidence based on how I practice medicine, in my personal investigation of breast cancer I have uncovered several heartbreaking cases of patients with low Oncotype scores whose cancer did NOT behave as predicted and are now dealing with recurrences or living with metastatic disease.

In medicine, evidence is graded by how high quality it is. An “A” level or Level 1 study would be considered the best possible evidence, ideally obtained via a large randomized, double blinded placebo trial that included diverse patients from multiple sites.

In contrast, doctors’ opinions or customary practice are “C” evidence at best.

My opinion about my own treatment was now dangerously approaching Level Z evidence.

In the end, I got a call from my oncologist’s office about the Oncotype report and her opinion was – like mine – to move forward with chemotherapy despite the low score.

I am 100% on board with this, and in the end, I think I got what I hoped for: reassurance and insurance to fight this beast.

Who Here Has Cancer?

I had the strangest thought last weekend as I attended my daughter’s fifth grade orchestra concert and surveilled the audience in the (nearly full) auditorium:

Who here has cancer?

Statistically, nearly 40% of people in the U.S. will be diagnosed with cancer in their lifetime.

That is sobering information.

Scanning the crowd, I didn’t see any obvious candidates.

But then again, I was there with my post-mastectomy surgical drains hidden under my boxy jacket.

I was also there last fall, attending a prior concert, and undoubtably I had cancer then.

I just didn’t know it.

Who else was here, knowingly or unknowingly living with cancer?

There are nearly 17 million cancer survivors currently living in the U.S., including an estimated 300,000 in my state.

Of the U.S. total, there are 768,470 women survivors who have lived more than 30 years since diagnosis.

I would do almost anything to be one of them.

How Are You Feeling?

^^^ Back at work. Lipstick? Check.

How are you feeling?

With my return to work this week, many people are asking me this.

My usual response is a chipper “I’m doing ok!” 

But am I?

I would describe my return this week – a week earlier than planned, but what I secretly thought would happen all along – as being at about 75% capacity.

My patient load is definitely less than usual and I have been trying to wrap up the afternoons by 3 PM or earlier. Our IVF schedule was also relatively light this week, slightly fewer than 20 cycles, and not all of them fell to me.

I’ve been doing less at home, too. I still have a 15# lifting restriction for another two weeks and am not allowed to raise my arms directly above my head or do repetitive motions. The post-operative instructions I received from the hospital had examples of What Not To Do and the arm movement section clearly said not to wash windows. I laughed out loud because I do not think I have ever – EVER! – voluntarily washed a window, much less repetitively so.

I told a few people that I’m feeling more tired than usual, but I had to dig deep and ask myself if I was really more fatigued or if I thought that’s how I should feel and was somehow telling myself/others a false narrative.

The truth is, I’ve enjoyed this week’s quasi part-time schedule.

By the end of my second week off of work after surgery (I took 2.5 weeks off total), I knew that I was sliding into a bad place where my daily activities of Eating Girl Scout Cookies and Watching Daytime TV could not continue. Next week I am diving back in, full schedule and full steam ahead. The IVF calendar is at capacity and I will need roller skates to keep up.

While I am desperate to get past this acute cancer phase (successfully, too, please, please!), I am slllloooowly starting to think about how After Cancer (AC) life will be structured.

The pace I’ve kept for the past 3 years is not a viable long-term strategy, nor should it be. I’d like to find a happy medium between my cookies/TV, quasi part-time and roller skates schedules, although everything now is still too raw and unresolved to feel like I can make extended plans.

The Cure For Just About Anything

My mother-in-law is very kind and recently sent me a box of fancy chocolates.

The accompanying note:

“Here is my cure for just about anything. If you feel anxiety or frustration or whatever, take one or as many as it takes to make you feel good. Not to worry about calories. In fact you need extra calories to keep up your strength.”

They were delicious.

Letting the Days Go By

David Byrne performed “Once in a Lifetime” on Saturday Night Live last weekend.

At first I thought the performance was comically weird, and then I learned that the monochromatic Byrne clones onstage were a part of his Broadway show American Utopia.

Here’s the thing: “Once in a Lifetime” is my jam.

These lyrics have long resonated with me:

And you may find yourself in a beautiful house
With a beautiful wife
And you may ask yourself, well
How did I get here?

How did I get here?

I marvel at this again and again.

Prior to my diagnosis, the wonderment was directed at the fact that, nearly 22 years ago when we married, Spouse and I never dreamt our lives would objectively be as successful as they are.

Lately cancer feels like it took it all away.

Except.

Seeing David Byrne perform that favorite song in a new way sparked something within me.

I could change my tune.

Same song, new performance.

I don’t know what A.C. (After Cancer) Life is going to be like yet, but I really hope to find myself there.

Under the rocks and stones, there is water underground.

The Breakdowns

I break down every day.

Sometimes, more than once.

The triggers vary.

Like watching this song being performed on the “Today Show.”

I am generally neither sappy nor a fan of country music, but wow! These lyrics.

This puppy also made me cry, and I mean THIS SPECIFIC PUPPY.

Her name is Tina.

Last summer I was walking in our neighborhood and saw a tiny, adorable fluffball that looked like the puppy version of When the Gremlin Was Still Good.

Minor stalking later, the owner told me it is a Havashu, which is a designer dog cross between a Havanese and Shih Tzu.

These dogs are not easy to find, but a random Google deep dive led me to Tina, who was available at the beginning of the year, right around the time of my diagnosis.

Spouse – who probably would have done almost anything to cheer me up – offered to make Tina part of our family.

That idea was wildly impractical for so many reasons, but the one that hit hard was the fact that Tina’s life expectancy – 16 years – may exceed mine.

Cue the waterworks.

Lost professional opportunities are also hard to swallow. From a career standpoint, 2019 was a banner year, and 2020 held infinite promise. It is hard to decline invitations and cancel plans for speaking gigs or conferences. I fear that my professional stock has fallen now that I am sick and broken. I see it already. Maybe I will not come back – ever – to where I was B.C. (Before Cancer). People will whisper, they will be sad, I remain a Cautionary Tale.

But I am saddest when I think about my children.

While I have not shared this here before, my son – MGM – has autism. There is a distinct possibility that he will not be able to live independently in the future. Until now, I thought my predicted longevity and earning potential would be a cushion for him as he grows older. His vulnerability is nearly too much to consider.

And my daughter. Oh, my daughter. She is so smart, strong and independent – and honestly, she probably would be with or without me. However, the thought of her college entrance essay’s theme of “My Mother’s Death” is a loop I cannot stop playing in my head.

I hate that movie.

Vacillations

I’ve been vacillating lately between two dichotomous moods: YOLO and Why Bother?

Regarding YOLO (You Only Live Once):

Being off work has held a special danger for me: since I’ve had more time than usual to spend online, this has involved online shopping.

My YOLO streak has included a serious spending spree at Jenni Kayne – a wildly expensive brand I mentioned a few weeks ago – that netted me two sweaters and THREE pairs of shoes. [Spouse, if you are reading, please, please resist the temptation to do the math on this haul.]

I also bought a new swimsuit. Seriously, this almost qualifies for like-a-fish-needs-a-bicycle status. My reasoning: I really want to go on a long-planned vacation in March and with my recent surgery, I don’t think any of my old suits may fit or look right. It pained me, but I ordered a one-piece suit from Lilly Pulitzer that looked cuter on the model.

Speaking of that vacation, it is still kind of on the fence. I booked it over a year ago, and it is a version of the same vacation we have taken ten times already: a Disney Cruise. I only mildly apologize for the dorkiness factor that comes with taking a Disney Cruise ten times. This one leaves from Miami, which is a new port for us. I was planning to arrive two days early to enjoy some extra vacation time, but when I went to find hotel accommodations I quickly discovered that high season in Miami comes with limited options and huge price tags. My beloved St. Regis was not even available. A similar property had very little space and the rooms were exorbitant – over 4 figures per night. I suddenly remembered the huge stockpile – almost a million – of Marriott points I had been hoarding (Why? Not sure what mythical trip I was waiting for), and in true YOLO spirit, I blew 250,000 of them for two nights lodging in Miami.

Girl Scout Cookies. Normally I would avoid these like the nutritional plague, but YOLO, I have made quick work of several boxes and the cookie season is not over yet.

Regarding Why Bother?

In my darkest moments, there are thoughts of Why Bother? Boiled down it could sound even worse: Why bother living if you’re dying from cancer? New shoes don’t matter when you’re dead. That swimsuit won’t see much use if I am confined to my sofa, too ill to travel.

One of my biggest vacillations is my wedding ring.

A supremely unfortunate, albeit accidental, trip through the garbage disposal NEARLY FOUR YEARS AGO rendered my wedding ring useless.

With salvage unlikely, I quickly decided to laugh it off and patiently bide my time until I could get a shinier bauble.

Suddenly we’ve fast forwarded to now, and I’m still ring-less, which reflects nothing on the state of my marriage and is occasionally confusing for people who don’t know me well.

Why Bother or YOLO? The ring of my dreams (rings?) is comically out of reach, so Why Bother with something else? After all, I’ve survived four years already without. Or do I just move on, find something more realistic and YOLO forward? I do not have the answer.

The Hammer Drop(s)

You may think that the when you are first told you have cancer, it would be like being hit over the head with a sledgehammer.

You would be correct.

And also incorrect, because a cancer diagnosis is really more like a series of hammerings.

I discovered a new one yesterday, when I had my initial meeting with the oncologist.

But first, check out these earrings!

(These are from a jewelry designed named Catherine Thoms. I discovered her on the recommendation of another physician and she is on Instagram @catherinethomsjewelry.)

It’s still a challenge to find a top that will accommodate my drains. I picked this faux-fur number and then later regretted it as I sweated in the waiting room.

I also wore my new good luck shoes:

I liked the oncologist right away. She is appropriately confident and knowledgeable in her specialty. We figured out we are nearly the same age.

All good.

Then we talked about my cancer.

While there are a few favorable features (no evidence of cancer left behind or spread to lymph nodes, estrogen and progesterone receptor positive), there are some ugly ones, too.

These are the same things that caused me considerable agony over the past few days: aggressive grade, evidence of lymph-vascular invasion, slim margin for the area of localized cancer.

Long story short: evidence favors that in my case, chemotherapy is warranted.

There are so many details to be resolved. The first is when to start. I am 90% certain that I will start after our family returns from a long-planned spring break trip, This would delay the start by about two weeks. Will this make a difference in my long-term prognosis? I don’t know, but I think the quality of life boost from a vacation might win this battle.

The Overwhelming Kindness

^^^ Not sure who’s the Babysitter and who’s the Babysittee, but this faithful buddy has constantly been by my side.

Even in these early days, I have been humbled by the outpouring of love and support from friends from every stage of my life.

And let’s be honest, after 47 years, I have cycled through quite a few stages: early life and high school, college, medical school, residency, fellowship, my first job post-training, my current iteration.

(And I’m not ready to call it quits yet!)

The nature of my life has been to put my head down and soldier on. One year I spent 135 nights in a hospital, working.

I know because I counted them. That was not a good year.

And I’ve said it before, but Time is now my most precious commodity.

It is scary to see it passing – I still have dreams where I am in college, facing a final I forgot to study for, then wake up remembering that I am solidly middle aged, Ugh – and the cancer diagnosis sharpens the focus that Time may not be on my side the way I’d assumed it was.

Time has also gotten in the way of cultivating my relationships. I am ashamed of this; I know so many wonderful people and I am furious with myself that I didn’t tell each and every one of them every day how I love them and what they mean to me.

And so, My Dear Friends, I Love You.

Thank you for being an important part of my life, whether you gave me a ride to school sophomore year when I didn’t have a driver’s license; when your friended me on Day 1 of Biocore while I was a perpetually floundering college student trying to find her way; when I was delivering a baby in the OR at 3 AM and you let me stand on the Good Side during a c-section; when I really didn’t need the calories but you made the Cookies You Know I Can’t Resist and brought them to work (they were delicious).

Above all, I hope I have (mostly) been the kind of Friend to you that you have been to me.

Much love.