Off the pump

Chemo. The word alone is frightening. “So-and-so is on chemotherapy.” This used to easily invoke images for me of faceless techs in darkened rooms administering painful injections of searing drugs; patients retching for hours on end. Maybe that’s a little dramatic. But surely, it must be a sad and somber event.

Today was my second in-office infusion day, and I’m here to report… there could be worse. Every individual has their own experience, of course, and the point on the timeline contributes to one's current reaction; it's said to be cumulative. But today again, my visit to the infusion floor was pretty relaxing.

The medical staff is kind, empathetic, warm, and helpful. My “infusion nurse” is the same every time I go in. There’s comfort in consistency, and she’s a delightful person, to boot. She grimaced in reflected pain when she saw how irritated my sensitive skin is from the bandages holding the IV tubes in place. She administered my dose of Abraxane, drew blood many times, joked and schmoozed, and sent me home. I look forward to seeing her next time, even if it does mean she'll hook me back up to the pump.

I brought along special friends: my computer and cell phone, so I was able to get some work done and feel connected to my life. I dozed in my reclining chair, ate lunch, walked around when I needed to stretch.

I still don’t know what to expect of this journey. I asked my doctor a lot of questions this morning, before getting started. It’s a fine line to walk. I want to gather enough information to feel some control, but not speculate so much I get lost in “what-if” circles.

I asked about the side effects I experienced last week: headaches, fever, migraine aura – all expected results in this study. There’s no reason to believe the dog tick I found on the back of my leg last weekend contributed any measurable ill effects, but we'll watch for unusual symptoms from that too.

“What will you look for when I go off the meds and get scanned?” I asked.

“After the first cycle, we’re happy if the tumors remain stable from the last scans. If they’ve grown in size and number, we’ll rethink the plan we’re on. If they get smaller, that’s a terrific sign, but even if they haven’t changed at all, we’re encouraged.”

“Okay… chances are good then we’ll do a second cycle,” I speculate hopefully, “but what determines if you do a third, or a fourth?”

“We’ll continue as long as we see improvement; even a plateau.”

“I thought there was a ceiling of four cycles in the trial. Do you ever do more?”

“Yes. The protocol initially called for four cycles. But when we see continuing improvement, we continue the treatment. We’re looking to change the protocol to spell this out.”

So this is what research is all about: Set goals, and when the results come rolling in, change the parameters to achieve higher and higher goals.

When I first met my oncologist five years ago, she told me she hated melanoma. It’s personal with her, a vendetta. She hopes to find a cure, and she works very hard at it. She works for one of the top medical centers in the world, in a city full of world-class medical treatment. It’s not a race to see who gets to the top of the mountain first; she collaborates with the other top centers. NYU, Sloan Kettering, Columbia-Presbyterian – they all remain connected and aware of each other’s research. Her ethics dictate that if there were a better program somewhere else, she’d send me there.

Over the years I’ve seen her look weary many times. Melanoma takes its toll even on those who don’t have it! Just as my elephant can run me over in an instant, she sees patients all day long, each never far from their own elephant. She’s constantly dodging pachyderms, and I’m sure it’s exhausting!

When I first met her, I was so impressed with her dedication. My clinical trial is not her only research. She’s exploring vaccines also. Something stirred deep inside me, a desire to help her achieve her goal. Maybe that’s part of why I’m here….