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.

A Friend Like This

Last week, Spouse mentioned that he made plans for us to go out to dinner on Saturday night.

My nephew and his fiancée were on board to watch the kids.

I thought that we’d just been out to dinner, but when I did the math, I realized it had been nearly six weeks (longer?) since we’d eaten a meal together, just us.

[And before that? NOVEMBER. Sigh. We have work to do].

But, Saturday got away from me.

I was feeling well and decided to take the dog for a walk. I went too far and became tired.

Next, I attended my daughter’s fifth grade orchestra concert. I was nodding off by the end.

And then I was done.

I contemplated telling Spouse that dinner was off. Rest was all I could muster.

An hour of napping later, though, and I was refreshed and ready to go.

We drove to the restaurant, Spouse gave his name at the host stand, and we were shown to our booth.

And seated there was one of my dearest friends in the world.

G. and I started as physicians at the same academic medical center within 3 weeks of each other in the summer of 2008.

We quickly figured out that our birthdays are within days of each other. We both had to do a Meyers Briggs personality test as part of our work orientation and discovered that we had the same profile, one of the rarest, ENTJ. Our friendship sparked from day one and grew to wildfire levels.

And then, eight years later, we went separate ways.

For different reasons, the academic center was no longer for us.

I went into private practice.

He became wildly successful as an executive physician at a pharmaceutical company.

I missed seeing him every day but we were able to maintain our friendship.

Our paths still crossed several times per year, but there was no event that had him scheduled to be sitting in that restaurant booth on Saturday night.

That was pure love.

Turns out, Spouse and G. had been crafting this plan for weeks, knowing it would cheer me up.

It did.

Big gestures are not required for friendship, but wow! This one was marvelous.

Everyone should be lucky enough to have a friend like this.

I Probably Need To Go Back To Work

There have been signs that I’m ready to go back to work.

For one, I’m driving.

^^^ This was not me. I swear.

Two: I am watching an embarrassing amount of daytime TV.

This includes not only the usual suspects like Hoda and Jenna, but also deeper cuts like Magnum, P.I., reruns and many, many Hallmark Channel movies.

Three: I am basically stalking our mail carrier and felt like I’d hit the lottery the day that SEVEN magazines arrived in one fell swoop.

Four: I became bored enough to cook. I made curried carrot soup and a butternut squash quinoa dish (below). I made peanut butter and banana baked oatmeal cups.

Five: I spent 45 minutes at Whole Foods. I walked out with $22 worth of freshly cut fruit. This is a lot less fruit than you would imagine.

Most medical sites suggest that mastectomy recovery requires 4-6 weeks off of work.

I’m giving myself 2.5.

While work has successfully gone on without me, I know that my partners and staff are picking up a lot of slack. This cannot be an indefinite strategy.

I also derive a lot of my identity and personal satisfaction from my job, and I miss the patient interactions, professional collegiality and intellectual stimulation.

I know that when I return, there has to be a New Normal.

What this looks like, I don’t know.

I know I will need intermittent time off as I undergo chemotherapy. There will be more surgeries. Possibly the cancer will only progress and not regress. Maybe I will have a recurrence. Perhaps there will be many.

And if I use this diagnosis as a time of personal reckoning, I should also consciously craft a New Normal where work is not the primary thing that gives me identity and satisfaction.

I hope I can find a balance, but odds are I’m not going to figure this out before Rush Hour on Monday morning, when I’ll be slowly crawling along 494W with the rest of the commuting crowd.

For once the gridlock will feel good.

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.

The Time I Scared Them Away

Can there be cancer humor? I think so.

Picture this: I was home last week, resting and recovering from my bilateral mastectomy, watching the Hallmark Channel like nobody’s business, when I heard someone at the front door.

I thought it was our dog walker, and I jumped up to unlock the door lest she have to wrestle to get the key out of the lockbox.

Turns out, it was two twenty-something, incredibly earnest young women on my doorstep.

Earnest Woman (EW) #1: “Good morning. We are missionaries visiting all the families in this area because we are concerned about the state of the world and our future.”

EW #2, stepping forward: “Are you concerned about your future?”

Me (with enthusiasm): “Yes! I am home today recovering from major surgery for cancer, and you can believe I am EXTREMELY CONCERNED about my future.”

This was definitely not on script for these two.

Their eyes widened. Their nostrils flared.

EW #1 (very flustered): “Oh my god, oh my god, I am so sorry. This is obviously not a good time. We will leave.”

(Both hastily retreating.)

Me: “You can pray for me if you want.”

EW #2 (weakly): “We will.”

So, to sum it up: my situation is so awful that I scared away door-to-door missionaries.

But I wouldn’t mind it if they followed through on those prayers.

What Do I With My Head?

^^^ Spouse jokingly advocated for this look

With chemotherapy looming, it appears that hair loss is both inevitable and fairly predictable.

Much of what I read about one of the drugs I will be taking says that hair loss occurs 12-14 days after the first dose.

While there is something available called a Cold Cap to attempt mitigation of hair loss, it doesn’t sound like it works well enough to bother. The principle is that you freeze your scalp – and, presumably, hair follicles – while the chemotherapy drugs are being infused and the cold-induced blood vessel restriction “protects” the chemotherapy drugs from entering the blood supply to the scalp.

(Sidenote: this principle is also applied to icing the hands and feet before chemotherapy to prevent peripheral neuropathy. I am 100% doing this).

Data from the Cold Cap therapy suggest that about half of women lose only half of their hair.

This also means that for half of the patients, it doesn’t even work that well.

Anecdotal information from several patients who have Cold Capped seems to be summarized as follows: it didn’t work but they were glad they tried it.

Considering that you have to start icing your scalp an hour or so before chemotherapy starts, plus you have to keep caps on dry ice, PLUS you have to swap the caps out every 30 minutes AND it apparently causes a continuous ice-cream style headache, the end doesn’t seem to justify the means.

Will I wear a wig?

I downloaded this picture to my phone. It is a Cameron Diaz wig that is currently on sale for $305.

I’ve never worn a wig before.

Well, maybe as part of a Halloween costume when I was a kid, but it’s been a while.

Wigs seem to come in several hair types (real human hair, high quality synthetic, low quality Halloween-types, etc) and wildly varying price points. They also are definitely a Try-Before-You-Buy item, meaning that blindly ordering the above number and hoping it both fits and looks good is not advised.

One surprising thing that I am learning from other cancer patients is that many of them bought wigs but ended up not wearing them.

The reasons: itching, discomfort, feeling overheated, and the fact that a wig still looks like a wig, so why try fooling anyone?

But here’s the thing: Baldness is the sine qua non of cancer. Nothing screams “Cancer Patient” more.

There are two situations where I am most nervous and make me want the option of wearing a wig.

The first: around patients. Patients who are aware of my situation have almost universally shown an outpouring of support and love. To my knowledge, no one has fired me as their physician due to my diagnosis.

Or at least my staff has done a superb job of hiding it from me.

Still, I get it: it could be potentially scary to put your trust in someone who is clearly going through a health crisis. Will I be there for their appointments? Darkly – will I die halfway through their treatment?

The second: for my kids.

If I am honest, my biggest fear is that my kids will feel shame or embarrassment about how I look.

While neither have specifically expressed this, they are both tweens and I am sure they already see their parents as mortifying enough without tacking on the baldness.

Two options I am considering:

  • A partial wig from my own hair. Chemo Diva makes something called a Halo Wig using your own hair. Their website shows it best, but basically this is a tight cap with hair sewn around the edges. You need to wear it with a hat but it is your own hair poking out from below. The appeal of this is that it is your own hair and the turn around time is quick (around a week). The cost is roughly $400. You send them at least 7″ of hair and it must be hair that has been cut, as they cannot work with hair that has been collected after falling out. From a timing standpoint I could theoretically have my first chemotherapy infusion and then get my hair cut in the limbo period between treatment and anticipated hair loss. Because they only need 7″ of hair and mine is longer, I could also get my hair cut shorter now and still have a cute-ish short cut (and less hair to clog drains throughout my house when the time comes.)
  • A whole wig using my hair. Compassionate Creations is a company that specializes in this. The obvious upside is that you can have a wig made from your own hair, but there are serious downsides. Cost is one – this wig is roughly $900 – but that’s minor compared to the long delivery time (8-10 weeks) and the fact that you have to cut your hair all the way to the scalp to send them as much to work with as possible. The fine print on their website also says that few people send enough hair to craft an entire wig. Typically 2-3 heads of human hair are needed for a single wig. They offer the option of supplementing what is sent with their stock of synthetic hair or sending hair from more than one person.

Coincidentally, there is one person in my life who might have enough hair to make a wig:

^^^ And this was AFTER getting nearly 8″ cut.

Trixie’s ponytail is thicker than a baby’s arm. Her hair is a pretty caramel color and has almost never even been blow-dried, much less processed to within an inch of its life like mine.

Last week I jokingly suggested that she cut and donate her hair to my wig effort.

I could immediately tell that I’d called this wrong.

A look of fear crossed her eyes.

“Mom, please don’t make me cut my hair.”

Tears sprang.

I felt terrible.

I retracted the comment and tried to write it off as a joke, but the damage was done.

A few days later I saw her measuring her hair.

I re-iterated that I did NOT want her hair, but I still feel like some old fairy tale witch who’s trying to steal the Essence of Youth from a maiden.

And in the end, I am not going to go the Compassionate Creations route for a very practical reason, namely the delivery time of 8-10 weeks. My chemotherapy is expected to be around 12 weeks. This means I would (hopefully) be almost finished with treatment by the time a wig arrived.

Maybe I’ll make do with this instead:

I think I could rock it.