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.

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.

Ever Widening Concentric Circles

I reached out to some fellow MD cancer survivors and asked how and when they had shared news of their diagnosis.

My favorite answer was this: As ever widening concentric circles.

For me, the innermost circle started where you’d expect: Spouse, my immediate family, my work partners, my close friends, my kids.

My assistant – who is really the one who keeps me professionally on track – was also right in the mix, because patient schedules had to be juggled. I *hate* rescheduling patients and have only done this a few times, ever. I also instructed her that it was ok to say what was going on with me, not only because it is not a shameful secret, but also since I think hearing “She has to reschedule because she has cancer” is an immediate diffuser to negative reactions about a moved appointment.

[Sidenote: I also read something recently in an advice column about a patient whose physician had been on a medical leave of absence, but was now back to practice. The patient was asking the columnist if she should fire the physician due to the unfounded assumption that the physician had either been in some type of substance abuse rehab or a psychiatric facility. Fortunately, the columnist called the letter writer out with a Not-So-Fast-What-Are-You-Thinking response, pointing out things like maternity leave, a broken limb that prevents doing surgery, taking care of an ill family member and yes, cancer, that could temporarily take a physician away from duty. The columnist rightfully upbraided the letter writer, but it left me fearful that without an explanation, patients might make similar assumptions about me. I am still concerned that I may lose some over the uncertainty of what the next several months (? years?) will entail, but I will have to find peace with it.]

My kids were not difficult to tell. I have always been direct with them and this was no exception. As each step rolled out, I told them: I had a test that was not normal, I need to get another test, I am scared about the results, I have cancer, I need to get treatment. Their personalities are very different, but they both basically responded with “Ok.” While I would have been happy to answer any questions, they had few.

One of the last people I reached out to was my Mentor, someone who trained me in residency, helped me get a fellowship, and then hired me when I graduated and was my colleague for eight years. Adding it up, this is someone who has been in my life for nearly 20 years and whose impact has been immeasurable. I knew he would be devastated by the revelation and sharing the news was so emotional that I didn’t trust my voice and sent a text. He responded exactly as I knew he would, with kindness and grace. I think I struggled with telling him because I (accurately) predicted his emotional response would equal mine.

The circle is now very wide. As anyone with a crisis like this could tell you, there is an outpouring of love and support from all directions. Risking the vulnerability is worth it.

The Things You Don’t Think About

People warned me about some of what I am going to say and some of it might be obvious, but there is much about this situation that I hadn’t processed ahead of time.

  • Sleeping after a mastectomy is extremely challenging. Basically you have to stay on your back while the drains are in place. This is not easy to do, especially for someone who spends 99% of the time sleeping on her side. On the advice of others, I bought a wedge pillow and have been sleeping with that, although by “sleeping” I mean that my nights are a series of short, interrupted and uncomfortable naps that are punctuated by long periods of wakefulness.
  • There is phantom pain. A bilateral mastectomy, at its most basic level, is a double amputation. From the website of my former employer: “Phantom pain is pain that feels like it’s coming from a body part that’s no longer there. Doctors once believed this post-amputation phenomenon was a psychological problem, but experts now recognize that these real sensations originate in the spinal cord and brain.” The sensations vary from pinpricks to electric shocks to tingling to feeling exactly like milk letdown during lactation. They are not comfortable.
  • Outside of the phantom pain, there is total lack of tactile sensation to the chest. I was warned that after surgery, I should never use a heating pad to the chest because I could easily get third degree burns and never know.
  • In theory, you never need to wear a bra again. Well, I mean you CAN, and at this point it really seems odd not to, but you don’t need one for support. Although I am opting for reconstruction, many women also choose not to go that route and are happy with their choice.
  • The reconstruction process is long and multi-step. Although methods vary, a common scenario is to have temporary expanders placed at the time of the mastectomy. The idea is to create a placeholder for a future implant. I saw a sample ahead of time and it looks like a deflated bag of IV fluids.

^^^ This is an image I pulled straight off of Google.

There are tabs that are sewn circumferentially into place to keep the expander from migrating. A lot of the restrictions in arm movements stem from the risk of having them shift. There is a port for filling the expander with saline. An initial fill can be done in the OR at the time of mastectomy or it can start post-operatively. Fills are done at intervals until the desired future size is achieved. As they are being placed, the tissue expanders are also wrapped with Alloderm, which is “Complex acellular heterogenous scaffold and blood vessel architecture; dehydrated and ready to implant.”

That definition does not reveal the fact that Alloderm is really pieces of dried cadaver skin, treated to remove a lot of the cells that would either risk infection or immune response. The idea is that – much like an organ transplant – you do not want the body to reject the expanders; you want to promote their incorporation and the body’s healing (which includes making new blood vessel connections to the surrounding tissues).

I don’t have a complete timeline for this, but once at the desired size, the expanders still remain in place for several months until a second surgery can be done where they are swapped for (hopefully) permanent implants.

From what I’ve read, this process can take up to two years and there are many potential pitfalls: infection, poor healing due to chemotherapy or radiation that require removal of expanders, skin sloughing, fluid collections that require draining, implant rupture, etc. I am far away from the next steps so I am not focusing on potential complications now.

  • How shocking the disfigurement is. I guess I am getting used to it, but as I reported previously, I had a nice sob in the middle of the night the first time I saw my post-operative self in the mirror. It’s a lot to handle.

My Big Outing

^^^ From my Instagram stories (@fancyladydoctor)

Yesterday was a banner day: I ventured outside.

My friend H. was kind enough to drive me to my post-op appointment with my (wonderful) plastic surgeon, plus she braved seeing my Franken-chest (complete with drains coming out of the sides) AND witnessed all of this being photographed for comparison photos as the reconstruction progresses.

I’m 50/50 on whether her lawyer will soon deliver a restraining order due to the unsolicited nudity.

(Kidding! She is great and would be the near the front of the line to witness something akin to reality TV playing out in front of her eyes).

Something else happened: I saw the pathology report from my surgery for the first time.

It’s detailed, and I pored over it, line by line.

There were a few surprises.

The tumor is 1.3 cm (not a surprise). The four lymph nodes that were removed were all negative (a relief). The tumor is estrogen and progesterone receptor positive and Her2 negative (also known from the pre-operative biopsy). There is an associated area of something called Ductal Carcinoma in Situ (DCIS), a kind of localized cancer. This is likely what first showed up as abnormal on the mammogram. The right breast was completely normal (relief).

The parts that I did not like:

  • My tumor grade is 3/3. This is not a scale where you want to be at the top. “Grade” refers to how abnormal the tumor cells are, or how aggressive. The scale goes from 1-3, with 3 being the most aggressive (i.e. worst actors). My biopsy had previously called the tumor grade 2/3, and the final result of 3/3 is now worse.
  • The other area of DCIS is also 3/3. This was consistent with the biopsy report, so not a surprise but I still didn’t like it.
  • The margin (cut edge between tumor and normal tissue) was only 1.5 mm for the area with DCIS. This means that there was a paper-thin line between the abnormal tissue and normal tissue. BUT – at least the margin was “clean,” meaning that the cancer cells did not spread all the way to the edge (or beyond).

What I am taking away from this: I seem to have an ugly, aggressive tumor but it seems that maybe it came upon me quickly. The findings on the mammogram that triggered the additional testing were also NOT due to this aggressive tumor, rather they were from the adjacent area of localized cancer that is something entirely different.

In other words, if I wouldn’t have had the lesser area of localized cancer (DCIS) that showed up as the microcalcifications on the first mammogram, this could have ended up a lot worse.

Please, if you are reading this, let me advocate for being on time with cancer screenings!

Thank you for coming to my TED talk.

After digesting the report, I started the deep Google into my condition.

My tumor is T1c, N0, M0. My stage – I think – is 1A, but barely.

I used an online calculator to input facts about my cancer and predict recurrence. The risk was low – 4.1% – but later I found out that this calculator applies only to women who are older than I am and who are already 5 years past diagnosis and treatment.

Whomp, whomp.

I found another calculator to predict my 15 year survival.

Funny-not-funny: I just about went into full cardiac arrest when the calculator spit out that my risk of dying from breast cancer within 15 years was 75%.

I quickly realized that I had typed my tumor size as 13 cm, not 1.3 cm, and with the correct information (and a tumor 1/10 of the size), the result looked different:

What the above says: this has nearly a 10% chance of killing me over the next 15 years.

What is not seen: There is an option for adding traditional chemotherapy to the above (I have left this as “None” in the graphic). With chemotherapy, it looks like the risk of dying can be cut in half, to about 4.5%.

Is this worth it? Will I be offered or advised to have chemotherapy?

I don’t know this yet.

My first appointment with the oncologist is Monday, so I will have to wait for more answers until at least then.

It’s going to be a long weekend.

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.

Two Steps Forward

^^^^ With the Birthday girl, BC (Before Cancer).

Yesterday was not a good day.

After several days of steady progress, yesterday slammed me back to square one.

I woke up with a mild headache, which evolved into a full migraine within two hours. I was so nauseated, dizzy and generally in pain that all I could do was go back to bed for the next seven (!!!) hours, floating uncomfortably in a zone between asleep and awake, but always with pain.

I did not enjoy this.

Although I have some prescription pain pills from my surgery, I am against taking them, as nausea and dizziness – not to mention rebound headaches once they wear off – are potential side effects.

The thing that helped the most: a cold pack to the head.

Yesterday was also Trixie’s 11th birthday and I was determined to participate.

Spouse stepped up and made a birthday cake plus bought sushi (Trixie’s request; I declined) for dinner. I weakly sang my part of “Happy Birthday” and hoped that her memories of this day would focus more on the happy moments than images of her mother horizontal on the sofa with an eye mask and ice pack.

To stack the deck in my favor, I’d wildly overcompensated prior to my surgery and ordered her a Harry Potter LEGO set with over 6000 pieces as a Super Gift. Spouse brought it out last – after all the other packages had been opened and it seemed that it was all said and done – and her joy was palpable. Unexpectedly, MGM also got into the act and the two of them happily started building the set. Given that the instruction manual is 628 pages, they should be occupied for a while.

329 Days

If you have an Apple Watch, you’re likely familiar with the obsessive act of Closing Your Rings, meaning that you reach specific daily goals for exercise, calories burned and standing.

Your watch will also conveniently chide you if you are falling short. Sample message: “Check your rings. Your movement and activity rings are usually further along by now.”

Or this gem: “You can still do it! A brisk 65 minute walk will close your movement ring.”

In early 2019 I started getting messages that I had set my longest streak for closing all three rings.

Soon I had closed my rings every day for a month. Then two. Then six.

Sometime mid-2019, I decided to Close My Rings every day for a year.

This meant occasionally waking up at 4 or 5 AM to get in a hotel or pre-flight workout while traveling, late night dog walking in the rain, jogging in place for 45 minutes during a blizzard and other absurdities, but I did it.

I closed those rings 329 times, until I had to undergo a six hour surgery last week and all the wheels came off the bus.

Cancer has already taken from me. I will not reach my 365 day goal.

But I will start anew.

Tell Me What You Need

“Tell me what you need.”

Many people generously reached out after my diagnosis with this sentiment, and to be honest, I did not have an answer.

My standard line: “I don’t know yet. I’ve never had cancer before.”

And I absolutely did not mean that to be trite or rude; I simply think cancer is such an Earth shattering situation that you can’t know what you need until you are in the thick of it.

In no particular order, things that have been particularly helpful include:

  • Food. It is well known that I hate all domestic chores, including cooking, and two separate families prepared and brought over meals for us. Both were absolutely delicious. If left to my own devices, I would have probably had cereal for every meal, so this was a real step up.
  • Magazines.
  • A list of shows on streaming TV that I might like. I blew through everything on our DVR over the weekend and with time on my hands, I am open to a Netflix binge. A few friends sent ideas.
  • Book recommendations. I also received an Amazon gift card to buy more books from coworkers, and reading has been a great escape.
  • A fresh robe and slippers. There was a zero percent chance that I was not taking fancy slippers to the hospital with me.
  • A basket of luxuries. Ok, this sounds vague, but the people I work with gave me a large crate (also nice in and of itself) filled with things like lip balm, mints, hand lotion, fuzzy socks, colorful pens and a beautiful journal, plus a card signed with heartwarming messages.
  • Flowers. I have not left our house in five days and it is freezing outside. Flowers are a ray of sunshine.
  • A soft faux fur throw. This is seeing a lot of use!
  • Designer shoes. Oh, wow, these are so over the top fabulous. This is a wildly generous gift from a friend who knew that this would cheer me right up.
  • Prayers. Many people of various faiths have said that they are praying for me. I am humbled by this and covet the good thoughts going out into the Universe.

A few things that are specifically helpful after a mastectomy:

  • Pajamas that button up the front. Following surgery you cannot lift your arms above your head for a few weeks, so a front-opening top is necessary.
  • Mastectomy garments with drain pockets. Here is an example. I have already complained about these from a style standpoint, but they are really a requirement for this particular surgery. Most patients could use both camisoles and hoodies. I was fortunate enough to get both from generous friends. I have been wearing them every day.
  • Wedge pillow. I ordered this from Amazon. I received a lot of advice from post-mastectomy patients that side sleeping is out of the question and it is helpful to sleep on your back at an incline. Many post-op patients sleep in a recliner or adjustable bed. I have neither and decided to order this pillow. It has really helped me sleep. The one night I did not use it I woke up in a lot of pain and could not even move enough to get out of bed.
  • A ride. Or rides. There are several post-op appointments I need to attend and driving my Jeep Wrangler with its stick shift is not in the cards at the moment. A few people have offered to give me rides and I plan to take them up on the offer.
  • Babysitting. My daughter got invited to a sleepover and my nephew took my son skiing one day. They are affected by my diagnosis, too, and having something fun to distract them was a gift.
  • A blowout. The no-lifting-your-arms-above-your-head restriction also applies to hair washing. My stylist offered to wash and style my hair. Also helpful: dry shampoo.
  • A water bottle with a long re-usable straw. My T-Rex arms make it difficult to reach for a drink. Having a water bottle nearby that is easy to drink from is key. The one I am using most was a work freebie and has a wide silicone straw.

And finally: Acknowledging the elephant in the room with simple messages like “I’m sorry. Thinking of you” have also been sustaining me. A cancer diagnosis is a time of reckoning. People from all parts of my life have reached out and I know I am lucky to have this support. I am also glad to be alive in the time of texting; I would not relish repeating the same story over and over via telephone but being able to receive and respond to texts on my own time/terms has been wonderful.

Thank you to everyone for your love and support.