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.
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.
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.
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.
This article in The Atlantic is getting a lot of (well-deserved) attention.
The link is above and it’s well worth your time to read it.
As someone who is currently undergoing cancer treatment – a.k.a. a high-risk, immunocompromised individual – I feel strongly about taking pro-active measures to keep society – and myself – safe.
Our long-anticipated spring break cruise?
While it was not a hard decision for our family to make, I am still part of a social media group of fellow cruisers who are still planning to embark as scheduled.
It’s disappointing to see so many comments along the lines of “Whoo-hoo! Less people at the buffet!” or “Free upgrades for everyone!”
The most dangerous fallacy, I believe, is this: “But I’m healthy.”
Up until recently, so was I.
I practice a very niche area of medicine and for the most part, I don’t have a high patient volume nor are most of my patients extremely ill.
But think about other medical specialties like geriatricians, ER physicians, oncologists, critical care physicians, etc. There are many specialties where patient acuity and volume are both high. Some fellow OBGYNs I know routinely see up to 40 patients a day.
So, even if you are a healthy individual, an infected-but-asymptomatic (or incubating) health care provider could easily be a point of contact for dozens of really sick people every day.
Patients who are seeking care for one illness may be put at risk for acquiring another.
This could get bad very quickly, and likely will.
I agree with many of my colleagues that health care providers, and especially physicians, should lead the way as role models as we wade through the Coronavirus pandemic.
Hopefully some of the residual cruisers will also get the memo, although as we’ve seen recently, even if they don’t, their vacation may get an unwanted 14 day extension in quarantine.
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.”
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.
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.
With my return to work this week, many people are asking me this.
My usual response is a chipper “I’m doing ok!”
But am I?
I would describe my return this week – a week earlier than planned, but what I secretly thought would happen all along – as being at about 75% capacity.
My patient load is definitely less than usual and I have been trying to wrap up the afternoons by 3 PM or earlier. Our IVF schedule was also relatively light this week, slightly fewer than 20 cycles, and not all of them fell to me.
I’ve been doing less at home, too. I still have a 15# lifting restriction for another two weeks and am not allowed to raise my arms directly above my head or do repetitive motions. The post-operative instructions I received from the hospital had examples of What Not To Do and the arm movement section clearly said not to wash windows. I laughed out loud because I do not think I have ever – EVER! – voluntarily washed a window, much less repetitively so.
I told a few people that I’m feeling more tired than usual, but I had to dig deep and ask myself if I was really more fatigued or if I thought that’s how I should feel and was somehow telling myself/others a false narrative.
The truth is, I’ve enjoyed this week’s quasi part-time schedule.
By the end of my second week off of work after surgery (I took 2.5 weeks off total), I knew that I was sliding into a bad place where my daily activities of Eating Girl Scout Cookies and Watching Daytime TV could not continue. Next week I am diving back in, full schedule and full steam ahead. The IVF calendar is at capacity and I will need roller skates to keep up.
While I am desperate to get past this acute cancer phase (successfully, too, please, please!), I am slllloooowly starting to think about how After Cancer (AC) life will be structured.
The pace I’ve kept for the past 3 years is not a viable long-term strategy, nor should it be. I’d like to find a happy medium between my cookies/TV, quasi part-time and roller skates schedules, although everything now is still too raw and unresolved to feel like I can make extended plans.
My mother-in-law is very kind and recently sent me a box of fancy chocolates.
The accompanying note:
“Here is my cure for just about anything. If you feel anxiety or frustration or whatever, take one or as many as it takes to make you feel good. Not to worry about calories. In fact you need extra calories to keep up your strength.”
Like watching this song being performed on the “Today Show.”
I am generally neither sappy nor a fan of country music, but wow! These lyrics.
This puppy also made me cry, and I mean THIS SPECIFIC PUPPY.
Her name is Tina.
Last summer I was walking in our neighborhood and saw a tiny, adorable fluffball that looked like the puppy version of When the Gremlin Was Still Good.
Minor stalking later, the owner told me it is a Havashu, which is a designer dog cross between a Havanese and Shih Tzu.
These dogs are not easy to find, but a random Google deep dive led me to Tina, who was available at the beginning of the year, right around the time of my diagnosis.
Spouse – who probably would have done almost anything to cheer me up – offered to make Tina part of our family.
That idea was wildly impractical for so many reasons, but the one that hit hard was the fact that Tina’s life expectancy – 16 years – may exceed mine.
Cue the waterworks.
Lost professional opportunities are also hard to swallow. From a career standpoint, 2019 was a banner year, and 2020 held infinite promise. It is hard to decline invitations and cancel plans for speaking gigs or conferences. I fear that my professional stock has fallen now that I am sick and broken. I see it already. Maybe I will not come back – ever – to where I was B.C. (Before Cancer). People will whisper, they will be sad, I remain a Cautionary Tale.
But I am saddest when I think about my children.
While I have not shared this here before, my son – MGM – has autism. There is a distinct possibility that he will not be able to live independently in the future. Until now, I thought my predicted longevity and earning potential would be a cushion for him as he grows older. His vulnerability is nearly too much to consider.
And my daughter. Oh, my daughter. She is so smart, strong and independent – and honestly, she probably would be with or without me. However, the thought of her college entrance essay’s theme of “My Mother’s Death” is a loop I cannot stop playing in my head.