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.

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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…)

Becoming Stage IV

It’s funny, the random things you remember and tuck away for later, without knowing why. A few years ago, I read an interesting article in the Washington Post about a drastic cancer surgery pioneered by a local man. Maybe it was his name that made it stick in my head: Dr. Sugarbaker. Such a pleasant name, so incongruous  with what sounded like a kind of torture, a procedure involving the patient’s internal organs being basted in hot chemo drugs like a bizarre spa treatment after all-day open abdominal surgery. I remember remarking on it to my husband; joking about the name. I remember thinking “God help the poor people who have no options left beside that!”

Fast forward three years. My oncologist is calling, which can’t be good: He’s an email guy. I don’t even know his phone number. It’s after hours and it sounds like he’s on his cell, driving. (more…)