My cancer has gone the way of the Syrian government and declared an end to the cease-fire. I got a call early yesterday morning from my oncologist, and it wasn’t to tell me he’d found a cure. My numbers are up. Way up. Rationale Liz said “Yippee! Clinical trials here we come!” Emotional Liz said “WTF?!?!?!??” So I hand her the keyboard and let her type.

I wait on the scheduler from his office to call to set up scans to see what’s really going on inside my body. Who was it who said “The waiting is the hardest part?” The scheduler is a nice person, but she doesn’t understand the anxiety involved in sitting by a phone that isn’t ringing. So as soon as I hang up with my doctor, I scrounge around the house for some chocolate bars awaiting Halloween, shove them in a postal mailer with a “thank you” note for being so prompt in scheduling my scans in pop it in the mail to her. Having been through this before, I know chocolate is a great motivator.


In the meantime I rely on narrative medicine (which is actually a program Columbia University offers). In my case, though, it’s the story I choose to tell until I have evidence otherwise.
I tell myself these numbers are being driven up by a shrinking tumor that’s casting off dead proteins which are showing up in my blood counts. For proof, I point to the tender spots on my body, under my armpits, along my sides, up and down my arms where my lymph veins are heavy with dead cancer cells.
I remind myself about the doctor at the immunotherapy symposium who showed a slide of a liver scan of someone on an immunotherapy trial. Twelve weeks in to treatment, the liver had doubled in size making it look like the drugs weren’t working. Yet the patient said he felt healthy, good, energized. Sometimes healing looks like it’s getting worse before it gets better. That’s what gives our stories drama.
I tell myself I can actually feel the drugs working. If a bone could itch, that’s what it feels like. Itching is a sign of healing (at least that’s what my grandmother says. She’s 94, alive and kicking, so she must know a thing or two about it).
Despite having set a course for the future with an eye on clinical trials, I still want to believe these drugs are working and that I can coast, even if it’s for only a little while.


Nonetheless, this is what I’ve been drafted into as a Breast Cancer Conscript. Numbers will dictate my life, but not my mind. I’ve put together a strategy for these occasions, one that life tested yesterday.
After the chocolate bars, I text a friend who has battled breast cancer three times. She is now cancer free. She knows what I’m going through. She also knows exactly what I need to hear: “It’s going to be OK.”

The second thing I do is email the clinical trials coordinator to update her. I explain that I’m really doing it to give myself a sense of control in a situation where I have none. She understands and writes back with the next steps I need to take.

Then I call my husband and my mother. They’re both my advocates, but they also are shaken by this kind of news, so I have to solidify myself first. It’s that whole oxygen mask falling from the ceiling cover your own mouth before moving on to others syndrome. I remind them both that we have a plan no matter what the outcome. When they hear that I’m upbeat, they relax a bit.

Then I email a cancer counselor who’s great for talking me in off the ledge or giving me ideas of what other patients in a similar position have done. With their permission, she often puts me in touch with them. I’ve made quite a few friends this way, several of whom were on my texting chain yesterday.

And this is where things started to fall apart. The battery charger for two laptops I have went dead, cutting off all email communication for the day. I was able to get an older, Windows XP computer up and running, despite being warned from my IT guys NOT to use it for trolling the Internet. This is an emergency though, so I hear nothing. Turns out, my counselor is on vacation but in a small working computer window, she gets back to me and we nail down a date.

The text to my friend who always tells me it’s OK goes astray, so I don’t get the thumbs up. Instead though, I get a cavalcade of texts from people who somehow intuitively know to check in with me. It’s a bit uncanny.  I tell them in Twitter-like responses about where I am in the cancer dance. Prayers start pouring in. There’s a brick under my foundation. I just might make it through the day.

My mother offers to take me to lunch where we pour over what we know, what we don’t know, worst case scenarios, next steps. It’s not all that bad and there’s a few times we actually laugh. I’ve made it halfway through the day.

Before my doctor signed off, he advised me to “keep doing what you’re doing.” So I make an effort to get to my running group, where I’m able to commune with several other woman battling their own affliction anathemas. On the way, I check back with my friend whose text was misdirected. She texts back that she can’t talk. She’s just leaving the dentist office. But she sends the obligatory “You’re going to be OK” and I smile just before I head out for the run. I’ve just about made it through the day.

The endorphins kick in about 10 minutes into a beautiful sunset which bleeds through the lacey, leafless tree silhouettes on the horizon  and even though I have to stop to walk a few times because I’m tired, I know I’ve made it through to another day.

Liz Johnson

Liz Johnson

Writer. Blogger. Advocate. Breast Cancer Conscript.