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.