When the cure is worse than the disease

Some thoughts on odds

When you finish the “active” part of breast cancer treatment — surgery, chemo, and radiation — many well-meaning people will ask if you’re in remission or a “survivor.” These well-meaning people may not know what for most people with the most common form of breast cancer, hormone positive, you’ll be on hormone blocking medication for at least 5 or 10 years. You don’t know if you have survived unless you outlive a recurrence.

Because I had a high grade tumor and lymph node involvement, my cancer is considered somewhat high risk for recurrence. So in addition to the meds that stop me from making estrogen, my oncologist added in a second medication called Verzenio. This is what’s known as a targeted treatment that theoretically keeps cancer cells from replicating. Except that Verzenio has really only been proven to do that in people with Stage 4 cancer. According to my oncologist, it only cuts survival rates by a small percentage for people at stage 2 or 3, but she wanted to throw the kitchen sink at my cancer because I told her that was okay.

It was okay until I actually started taking Verzenio. Let’s take a little tour through some of the side effects.

So basically, Verzenio has the same side effects as chemotherapy, and while you’re on it, you’re monitored by a chemo pharmacist to see how your body is responding to the medication. You get bloodwork every week or every two weeks. You’re also prescribed an anti-diarrheal because, just trust me on this, you will shit yourself with some frequency.

Within two weeks on this medication I had to go on a reduced dose because my white blood cells bottomed out, and I was pooping my pants, pooping the bed, pooping the car, just pooping everywhere like some sort of disgusting volcano. Then I had some dental work done and they had to pause the Verzenio because it can increase the risk of infections that can travel to your brain. Fun. Then I went back on it and my liver counts shot up to four times the normal values. I grew up around alcoholics and let me tell you, liver failure is not a good way to go. So my oncologist and I made the decision to take me off Verzenio.

Physically, I immediately felt better. According to the bloodwork I never seem to stop needing, my liver is still kind of angry even a month later, which tells you how toxic this medication is. But mentally, there’s definitely a feeling of failure. On the Reddit breast cancer sub, I read testimonies from people so desperate to keep their cancer from returning that they wear diapers to work and sleep on plastic sheets and ignore alarming bloodwork results just to stay on Verzenio.

Why couldn’t I do that? I’m back to teaching full time, and we don’t have private faculty bathrooms. We use the same dirty, crowded restrooms as our students. One of my classrooms is two floors away from the nearest bathroom. If I needed to go with the urgency Verzenio made me go, it would be a race I’d likely lose. Also, I need a functioning liver in order to handle the other meds I’m taking. I haven’t had a sip of alcohol in nearly 15 years, and Verzenio was giving me the liver of an 80-year-old who spends every night at the bar knocking back boilermakers.

So I couldn’t “tough it out,” and for some people, that means I’m not the kind of “fighter” who is going to “kick cancer’s ass.” Oncologists don’t even like to tell people their odds of escaping recurrence any more because the disease so often proves them wrong, so I really don’t know what mine are. I do sometimes wake up at 3AM and start feeding my TNM (tumor, node, metastasis) data into an online calculator, and while it’s pretty likely I’ll be here in five years, beyond that they all give me something like a shrug emoji. My friend with breast cancer was told she had a 90% rate of surviving and she was dead within six years. Honestly, I’d rather not get my hopes up like she did and face the reality that we just don’t know if it’s going to come back or not.

Yesterday I was driving home and the car in front of me rolled a stop sign and hit an elderly woman. I watched her topple, watched people come running from every direction, called 911, was waved along by a cop. A few weeks before that I watched a car slam its brakes for no reason at a different intersection and watched as a guy on a motorcycle slammed into it, fell to the ground and had a seizure. It was more than five minutes before someone picked up at 911 and the ambulance took so long to arrive that his friends, one of whom I held hands with as he sobbed and shouted, loaded him into a car and drove him to the ER. Twice in just a few weeks, within a mile of my house, I saw people come that close to dying.

Cancer is just another driver looking at their cell phone, another person who’s had some drinks and thinks they’re fine to drive, another person distracted by their own needs or wants. The medication my body couldn’t tolerate might have been as helpful as the helmet the guy on the motorcycle wasn’t wearing, but it might also have left me just as vulnerable as that elderly woman who went down to the ground like a bundle of twigs, fragile and delicate, desiccated by age and ready to snap. There is only so much, in the end, that any of us can do to stay alive other than looking both ways, and even then it might not be enough. But you have to keep crossing the street, even if you might die every time that you do it. Otherwise, you’ll never get to the other side.