“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.