What It’s Like to Lose Your Hair

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.

Yet.

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.

I feel like a nude mouse:

Albeit one with lipstick.

Metal Mouth

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.

Some cancer patients call this metal mouth.

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.

Chemo #1 Is in The Books

^^^ 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.

Could the Timing Be Worse?

^^^Rhetorical question.

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.

Side Effects May Include

I went to a mandatory chemotherapy education class last week and received this helpful binder, pictured above.

The cover art reminds me of one of my Grandma’s 1970s photo albums.

It’s chock full of helpful information, including all the potential side effects.

And wow!

There are SIDE EFFECTS.

These include: hair loss, numbness and tingling of hands and feet, fatigue, liver dysfunction, kidney dysfunction, bone pain, damaged finger and toenails (possible loss), mouth sores, altered taste sensation, decreased appetite, nausea, vomiting, muscle aches, and So. Much. More.

In an ironic twist, there are both constipation and diarrhea listed in the manual.

Well, that’s a fight without a clear winner.

I Canceled Getting My Highlights Done

My roots look terrible but I canceled an appointment to get my highlights done last week.

Really, what’s the point?

My hair’s going to fall out soon anyway.

$300 saved.

My current plan is to get my head shaved approximately one week after my first chemo treatment.

Here are some terrible but accurate comments about chemotherapy-related hair loss:

Hair usually begins falling out two to four weeks after you start treatment.

It could fall out very quickly in clumps or gradually. You’ll likely notice accumulations of loose hair on your pillow, in your hairbrush or comb, or in your sink or shower drain. Your scalp may feel tender.

Your hair loss will continue throughout your treatment and up to a few weeks afterward. Whether your hair thins or you become completely bald will depend on your treatment.

People with cancer report hair loss as a distressing side effect of treatment. Each time you catch a glimpse of yourself in a mirror, your changed appearance is a reminder of your illness and everything you’ve experienced since your diagnosis.

My take on the loss is that it is inevitable. I have followed some other patients’ journeys via Instagram and it seems that even those who try to fight the good fight eventually succumb to a full head shave, and the in-between stages are not exactly awesome.

Plus, I am lazy. I do not like to clean at baseline, much less sweep up masses of hair from every surface of my home and unclog disgusting shower drains. It seems more efficient to have this done in one fell swoop in a salon setting that does not require me to maintain cleanliness.

Here is what I am really upset about, though:

New hair may grow in just like old hair, or it may be thicker, curlier, straighter, or a different color than it was before treatment. Some women who regularly color-treated their hair are surprised when new hair growth is completely gray.

Oh, my god.

Now would be the time for me to hit the panic button. Repeatedly.

I have always joked that I will die blonde, dyed blonde.

This led me to google the following:

Fortunately, it seems that extremely short hair is still dye-able.

Whew.

Now here’s hoping to get to that next phase.

Here We Go

Well, I still didn’t get around to buying a wig yet, but it’s time: I start chemotherapy next week.

With our planned spring break trip quashed by the Coronavirus, it opened up an opportunity to start chemotherapy sooner rather than later.

It took a lot of finagling (props to my amazing assistant, C, for getting this done), but I am squeezing in chemo session #1 after an early morning bone density scan (I’m the patient here; this is a baseline pre-chemo requirement), then doing procedures in clinic #1, driving across town, finishing a half-day in clinic #2, driving across town in a different direction, (hopefully) getting the chemo, and finally circling back home.

The rest of the week is already fully scheduled, so fingers crossed that I follow the predicted path where my worst post-chemo days will fall over the subsequent weekend.

No rest for the working #doctormom.

I mentioned above that my assistant worked extremely hard to make this happen, and that is a gross understatement. When the earlier chemo appointment was offered to me, I knew I had to make it work, but it felt insurmountable given the patients who were already scheduled. I hate to cancel or move patients. In my entire four year residency, I did not take a single sick day. I missed one week my intern year when my father died, but I was on an off-service rotation and it did not impact anyone else. I was so conscious of this.

In the past 15 years, I can count the times on one hand that I have called in sick (One was memorably on Election Day in 2008, when our entire family had a horrible GI bug and I was 23 weeks pregnant with Trixie, but I was DETERMINED to vote for Barack Obama and went to the polling site with my own trash bag in case I needed to throw up. I digress).

Much like when I was trying to schedule my mastectomy, I feel terrible that I am inconveniencing others, making patients change long-planned appointments or incite anger or frustration that causes them to fire me and go elsewhere.

Or eviscerate me on review sites.

While some of the grit I have shown throughout my career is what makes me a good doctor (and I can appropriately say that at this point), I also wonder when enough is enough.

If I was giving advice to someone else, I would tell her she’s nuts to prioritize a half day of work over GETTING CANCER TREATMENT. We are talking about chemotherapy here, not highlights at the salon.

And there is also the nagging voice in my head that also wonders (fears?) that some of the unrelenting stress I have brought upon myself has contributed to my diagnosis in the first place.

For now, I am going to play cycle #1 by ear. I don’t know how I’ll respond. I don’t know how I’ll feel. I don’t know which side effects will affect me. I don’t know if I’ll need time off or if I can (mostly) work full-ish time.

And I will need to make peace with that.

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.

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.