Author: AF

Amanda started the blog lifeupstaged. She died in January 2017. Charles is now the blog's caretaker.


Sorry for keeping you in suspense about my scan results! I had a second, different type of scan today to clarify some of the findings from the one I had last week. The short version: I still have cancer, which of course I was secretly hoping against all reason not to hear. The imaging still reveals at least three tumors, roughly the size of cranberries, scattered through the peritoneum (abdominal lining). But they haven’t grown significantly, and my liver, lungs, and other organs remain unaffected. In other words, my cancer is stable.


Breathing exercises 

“Take a deep breath, and hold it,” the man with the vaguely Australian accent is saying. I’ve been in this CT scan machine often enough to recognize that he’s a recording. (Heck, I’ve been here often enough I should probably start worrying about all this radiation exposure — oh, never mind, I already have cancer.) 

I like to imagine I am passing through some sort of magic portal as the machine slides me through the noisy, whirling ring that directs the computer’s gaze. Maybe I’ll emerge in a parallel universe where they’ve just cured cancer. Or at least a universe where I have a pony, perfect skin, and a summer home in France. 

This scan will be the test of whether my current course of combined chemo and immunotherapy is doing anything. If my tumors have grown, well, damn. Time for plan Z (we’ve been through all the others). If they’re stable or shrinking, I’ll do a happy dance and return to the routine of daily pills and infusions every two weeks, until the next scan. It could be a few days before my doctor is able to take a look at the report and issue a verdict.

In the meantime, I’ll follow the instructions of the voice in the machine: 

“Carry on breathing.”

Whine, please!

My daughter has a fever today and is generally miserable. I want her to feel better immediately, of course. Sick three-year-olds are pretty much the most pathetic thing in the world. (“Mommy, mommy, mommy, what can I do?! What can I do?! My legs are freezing but my head is hot and my sweatshirt feels funny and oh no I spilled my water and oh mommy mommy waaaaaa waaaaaa!” she wailed for 20 minutes straight until the ibuprofen kicked in.)

But at the same time, it’s such a relief to shove my own aches and pains to the side and focus on someone else’s problems. I love being the caregiver instead of the patient for a change.

I feel this relief every time a friend tells me about something hard that they are going through, which frankly, doesn’t happen too often these days. The sharing, I mean. Last time I checked, nobody’s life was perfect, but people seem to think it’s bad form to complain about anything to a cancer patient. If they do dare, they often stop and apologize mid-story, saying, “Of course, this is NOTHING compared to what you are going through. I can’t believe I’m even telling you about it.” (more…)

Life Lessons from Three-Year-Olds

2016-08-23-14-16-42This summer, I brought my daughter on a long-planned trip to my home turf: Vermont, where I spent my first 17 years and where my parents and grandmother and several good friends still live. I had envisioned showing her all my favorite old haunts, rambling down rec paths, going to the beach by Lake Champlain, and maybe even taking a short hike in Smuggler’s Notch.

As it turned out, I didn’t have the energy to do much besides get on and off the plane, collapse into my parents’ car and spend most of the week sitting around their house. It was just a few weeks after I’d learned about my recurrence, and I was still exhausted from the barrage of chemo drugs I’d received a few days earlier. (more…)

The promises, and challenges, of precision medicine

I’ve been talking a lot lately about immunotherapy — with family, friends, neighbors, anyone who asks me how my treatment is going. But when someone politely inquired the other day about my “amino acid therapy,” I realized that I’ve been spending too much time in Club Cancer! Not everyone speaks this lingo (and I’m glad they don’t have to).

So, let’s take a step back and I’ll try to explain the basic difference between chemotherapy — which a lot of people are familiar with, at least the word itself — and terms like “precision medicine” and “immunotherapy,” which are getting a lot of press in the past year or two. (more…)

Courage, dear heart.

I’m tracing my thumb over the smooth, soothing surface of a necklace sent recently by a dear friend. Beneath a bubble of glass, it features a silhouette of a lion’s head and a quote from one of C.S. Lewis’s Narnia books: “Courage, dear heart.”

I’ve cherished those books since I was a child, but it’s been a while since I’ve read them, so I had to look it up to remind myself of the context. I was glad I did. It’s from a chapter called “The Dark Island,” in Voyage of the Dawn Treader, and it seems a very apt metaphor for what I’ve been up against lately: (more…)

The hardest part

I read a news article once about a mom in some tropical locale who woke up to find a deadly snake in the bedroom, beside her sleeping baby. So she punched it in the face. Repeatedly.

I wasn’t a mom yet at the time, and I remember thinking: “Wow. I wonder if I could ever do something as brave as that?” The story came back to me during a midnight nursing session in one of those first weeks of parenthood, when I couldn’t tell if I was awake or asleep half the time. The mere idea of a snake threatening my baby was enough to jolt me awake, adrenaline pumping, and that’s when I knew: I would fight ANYTHING for this lovely little creature. I would do whatever it takes to keep her from being hurt.

Which is why it’s not the dying I’m afraid of; it’s the leaving.  (more…)

Love and nonsense

They mean well. They really do. They love me and they want me to be okay.

I repeat this to myself, often through gritted teeth, whenever someone sends me information about the latest all-natural “cure,” or sends me books and documentaries and websites claiming to unveil the “truth” about cancer and how my doctor is part of a big pharma conspiracy.

I believe that they believe these things; my friends and family are honest people. But that doesn’t make it true. In a media landscape where anyone can pretty much say or publish anything they want, it can be hard for a layperson to tell the difference between solid science and anecdotal evidence laced with hype (or even outright quackery). (more…)

Alas, poor Ned! I hardly knew him.

Oh, NED. I miss you already. Others who have experienced cancer will recognize this odd acronym, used by doctors to describe the awkward expanse of uncertainty between “measurable disease” and “cured.” It stands for No Evidence of Disease, meaning that there’s nothing in your bloodwork or scans to show that cancer remains in your body, and yet, the danger remains great and you must keep vigilant watch. It only takes a few rogue cells lurking in the shadows to wake the beast again. (Kind of like You Know Who at the beginning of the Harry Potter series.) Only time can tell how long your remission will last: could be a few months, could be decades.

Maybe, you dare to hope, the disease will Never Ever Dare to return. Sometimes it doesn’t.


The “mother of all surgeries”

I’m so glad this article didn’t come out a few months sooner. Here’s the lede:

The operation is so terrifying some call it MOAS: the Mother of All Surgeries. It can take 16 hours. The risk of complications is high. And after 30 years of research, doctors are still arguing about how well it works.

….Now, as the surgeon scrubbed in, Phillips was ready — or as ready as one can be — to have his innards scraped with electrified wires and sluiced with hot poison.

Gripping journalism, but terrifying pre-operative reading material. Geez.

Reading this two months after undergoing the same procedure makes me marvel at the fact I was out of the hospital within six days. I trace the scar sealing my own abdomen with wonder. (more…)