Interview

I’d been to the Cancer Center to have blood drawn this morning and was sitting on the train on my way home from the City when my cell phone rang. My doctor announced herself.

“Oh dear,” I exclaimed. “Was I supposed to see you this morning? I wasn’t aware I had an appointment.”

“No, she said. I’m calling because ABC contacted me. They’re doing a piece on melanoma awareness and they want to interview a couple of my patients. They asked for someone who’d had melanoma on their foot and I thought of you immediately. People need to know that melanoma can show up in unusual places and they need to see more of cancer survivors.”

We talked about it for a few minutes and I agreed to the interview this coming Tuesday. I’ll let you all know when and where to find the broadcast.

My big decision at this point is whether or not to wear the wig. I’m leaning toward “not”. In fact, I went to my lab appointment in the City this morning without it!

Trial run

I did something new this weekend. I went to a craft fair in Massachusetts with my friend, the gallery-owner. That’s not the new part. I’ve gone to several such events with her, and many more on my own. It was a perfect day for it, one of those glorious spring days you wish could last throughout the year. She picked out things for her store and I window-shopped.

The new part is that I went wigless.

I’ve been thinking about my hair a lot, now that it looks like I may keep it with this new treatment. It’s grown back to about the length it was last Thanksgiving, which is to say, it’s just barely long enough to cover my head. I’ve been hoping for it to grow in curly, but it’s still too early to tell if it will. As before, it’s completely white, and not quite a hairdo. It needs another month or so before it will look “intentional.”

I have taken off my wig in the company of friends before. It’s easy with people I trust and so much more comfortable. I figured that going wigless among strangers would be a good next test for me. And I didn’t feel uncomfortable or self-conscious about it at all, even when we ran into people we knew. In fact, the only comments were compliments.

As with all things new and fearsome, the anticipation was much worse than the actuality. Self-consciousness is certainly self-defeating! Why should the prospect of appearing in public in a different guise upset me as it does? I can’t answer that except to say that if this were easy for me, I’d have to be a different person.

The final frontier will be going to my client, where I’ve been working onsite about once a week for the past couple of years. I’ll have to mull it over a while longer before I show up there in the buff, so to speak.

On a new course

I started my new treatment this week. So far so good. My doctor and I were talking about what side effects I might expect, most typically rash, itch, and diarrhea.

“But most patients don’t see those until after the third cycle, if at all,” she said.

“Third cycle?” I asked, visibly distressed, recalling the schedule the nurses handed me last week when I was in the office for blood work.

“I meant the third treatment. You’ll have one now, then again in three weeks, then a third three weeks after that.”

“But the schedule they gave me last week has appointments through October. I thought a cycle was twelve weeks, and their schedule includes two full twelve-week cycles.”

“Yes, but the second twelve weeks is observation only. You get scanned after the first twelve weeks. We watch, and let the meds settle in to work for another twelve weeks. Then you get scanned again. This treatment is long-acting. We’re not likely to see any change until after that second scan.”

I was still stuck on the schedule they’d written out for me, so I pulled it out of my bag.

“See, it shows appointments all along through the second twelve weeks.”

“Well that’s a mistake,” she said, to my relief, and went on to explain more of the protocol.

After the initial treatment phase, patients go on maintenance, with infusions every three months. Because this is still a research study, there’s no definitive word about how long this should go on, but eventually, the treatment will reduce even further, or even be discontinued.

She warned that the first twelve-week scan frequently shows no improvement, and may even show a reversal. Patients however, tend to report feeling a lot better at that time, so the researchers have learned not to scan too soon, and not to take these initial results too seriously. The second twelve-week scan is when improvement is most likely to show.

After our discussion and hugs I went to the treatment floor, where the nurse administered my intravenous dose of Ipilimumab, and measured my “vital signs” (temperature, blood pressure, pulse) before during, and after the infusion. The process was painless, and I’ve been feeling fine since.

Oh, and I got a lesson in how to pronounce the drug’s name. It’s not so tricky after all: Ip-li-mu’-mab. Just trips off the tongue!

More fun with words

I commented to a friend, as I did here in my last blog post, that the new drug I’ll be taking has a name I can’t begin to pronounce: Ipilimumab. My friend happens to be a doctor and he said, “The MABs are monoclonal antibodies.” That was a term I’d heard my doctor use, but it didn’t occur to me until he said it that the drug’s name incorporates an acronym.

I still don’t know how to pronounce Ipilimumab, but it comforts my brain to know that its derivation has some meaning, that it’s not simply marketing gibberish.

New treatment

I met with my doctor to discuss the results of my latest scan and the news is, well, mixed. There are still no hot spots on the PET scan, but the largest tumor has actually increased in size a small amount. The remaining tumors appear to have developed resistance to the chemotherapy.

My doctor says she wants to intercept this new trend early and switch my treatment. Her new plan is to pull me from chemotherapy and start immunotherapy instead. This type of treatment takes a different approach in that it doesn’t attack the melanoma directly. Instead, it is an antibody, a common blood protein that stimulates the body’s immune system to a higher level of vigilance.

A healthy immune system’s T-cells attack foreign bodies, and are normally modulated by a protein called CTLA-4 that shuts down the process when it’s no longer needed. Without CTLA-4, T-cell activity can continue unchecked and become an auto-immune disease. But in the case of cancer, CTLA-4 may suppress the immune activity prematurely, giving the cancer an opportunity to grow without T-cell intervention. Research indicates that interrupting CTLA-4 can allow the immune system to continue to attack the cancer.

In a couple of weeks I’ll get my first infusion of Ipilimumab, this new drug whose name I absolutely can’t pronounce. The treatment will be simpler than what I’ve been through: one infusion every three weeks for a twelve-week cycle. Side effects can include fatigue, itchiness, rash, and diarrhea; they may be minimal, and I might even get my hair back.

How do I feel about all of this? I’m not happy to find out how resilient this damn melanoma is. It’s pretty distressing to be reminded there is still cancer in my body and it can thumb its nose at my attempts to get rid of it. Additionally, starting a new treatment fills me with the dread of the unknown. It may be simpler, the side effects may be minimal… but I don’t know that yet. I’m sure I’ll feel better about the process when it’s underway.

On the other hand, my doctor says that patients who undergo this new treatment after taking Temodar tend to do really well. Temodar may somehow set the stage for very efficient T-cell activity.

Time will tell….

Follow-up

Walking toward the hospital yesterday, I noticed an awning that read “Pete’s Sake.” What an odd name for a Japanese restaurant, I thought. As I got closer I noticed it wasn’t a Japanese restaurant at all. It was an Irish pub... named “For Pete’s Sake.” Oh dear.

I was on my way to the hospital to visit my sister, whose recent, terribly invasive surgery went very well. But it didn’t end there with medical success. My sister is tough, determined, and focused. In the ten days since her surgery I’ve seen her go from groggy, in bed on her back, to achieving all the rehab goals that will allow her to leave the hospital shortly. Every day her voice is stronger; I could hear that on the phone. But to see her physical progress is truly amazing.

Initially, she couldn’t do more than stand and walk a few steps in place with the physical therapist. It was painful to watch those first attempts to get in and out of bed while someone held her legs. Now she climbs in and out of bed on her own. She periodically grabs her walker and tours the halls of the unit without prompting or assistance. She's learning to master steps and walking with a cane. She sits in a chair and laughs with her visitors. She even took a shower by herself!

I know there are those of you who think of me as a “tough old broad.” But you should see my sister; she is truly an inspiration!

For my sister

My sister is scheduled to have major surgery on Thursday. She’s undergone this procedure before, so she knows what she’s in for. She put it off as long as she could, weighing the misery of the anticipated surgery against the chronic back pain it will address. But the time has come and she’s nervous, preoccupied, and upset by the prospect.

My relationship with my sister has taken various twists and turns through the course of our lives, but most recently, I'm aware of how precious she really is. We’ve put a lot of our ancient competitiveness behind us, and are able to accept each other more readily than ever. I don’t know why it took so long, but this stage is a treasure nonetheless.

My head is filled with thoughts about her coming ordeal, and my heart goes out to her.