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 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.

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.

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.

As a Patient: Before and After

Loss of control. 

Loss of dignity.

Fear.

Uncertainty.

Vulnerability. 

Being a patient can be excruciating.

Today it is my turn. 

Last month I was diagnosed with breast cancer.

Today I will undergo a bilateral mastectomy and hopefully begin the reconstruction and healing process.

I am not even close to a point of accepting this in a way that I see it as a lesson or gift, but I am here to learn.

What I am also ready to experience as a patient:

Perspective. 

Patience.

Understanding.

Grace.

Hope. 

If you are the type, I would welcome your best thoughts and prayers. 

P.S. The picture above is one I deliberately took before I learned of my cancer diagnosis. I knew the biopsy results would arrive that day, and I wanted to capture a moment that would embody Before, because I knew if the results came back as malignant, everything would be divided into Before and After. This was Before. Now is After.