Well, it’s time for another needle. I’d been successfully avoiding a lot of these for the past six-ish months, but the afatinib pill I had been taking simply wasn’t working the way we needed it to. (Which is to say, it did not stop the cancer from spreading, much less reduce its presence.) So, on this uncharacteristically rainy Southern California day, I commuted through a maze of side streets to avoid morning rush hour traffic on my way downtown to the university hospital where I am to receive today’s infusion. It’s a far cry from the cozy satellite clinic I had been accustomed to up in Pasadena. I’ve spent the better part of 90 minutes waiting for things to be prepared since I checked in; I’ve wandered the maze of the hospital, searching out a paltry offering of snacks in the lower-level cafeteria and the free coffee in the main waiting room, sitting in various rooms and surfing the free Wi-Fi (but unable to stream Flint Town on Netflix, much to my chagrin).
Here, in the Day Hospital, as it is called, the vibe is wholly different than the spa-like atmosphere of my old chemo haunt. While this is certainly clean and bright, it feels like a hospital. There is nothing aesthetically pleasing about the large room cordoned off by sliding curtains. A few windows along one wall allow a tiny amount of natural light in, but they may be closed off by curtains at any time. Yet the reception staff seems bright and friendly.
The drug I am getting today — ado-trastuzumab emtansine, or Kadcyla — is not a traditional chemotherapy, and there have been some weird holdups in getting it properly scheduled. In part, this is because my use will be slightly off-label. My insurance company refused to approve it — but they also would not deny it, leaving me in a strange limbo where other plans were difficult to make. The hospital pharmacy has been working with the drug manufacturer to cover the costs in case insurance ultimately denied coverage, and we are moving forward with the understanding that, somehow, the medication will get paid for. These concoctions are so expensive that it is unreasonable to expect that patients could actually afford to pay out of pocket, but somehow the system works to cover these costs most of the time. The trick is figuring out how. I am three weeks delayed getting in for this new treatment, which hopefully will be drastically more effective than the pill I had been taking. At least the bar there isn’t very high.
The off-label use of this drug is rooted in an old-school approach to cancer treatment. The drug is approved for use in breast cancer, targeted to a specific HER2 mutation. My ERBb2 mutation is essentially the same thing as the HER2 commonly found in breast cancer, though in my case it may have more to do with the spread of disease. I’m not sure how all this works, but I vaguely understand the mechanics — at least enough to believe I am on the right course for stifling the growth of the cancer. This is what the afatinib was supposed to be doing, but this infusion is supposedly more effective, so my fingers are proverbially crossed.
Once inside the infusion cubicle, I can see that the amenities here are actually quite nice. The chair is every bit as comfortable as the old clinic and it even comes with a nice desk attachment. The only thing it lacks is the massage and heat I was spoiled by. But they make up for it with heated blankets and the promise of free food. In fact, there is a rumored menu that comes around from which I might order a sandwich that would be brought to my chair. Pretty fancy, if you ask me. Certainly, more than I was expecting. I guess I don’t need much. Little, thoughtful touches do a lot to offset the accoutrements that remind me I’m still in a hospital setting: the rolling cart of supplies with a “Code Blue” binder on top next to the defibrillator, the constant beeping sounds from behind neighboring curtains (along with a variety of coughs to rival my own), the endless patterns and panels all of varying shades of white. I see the needle just sitting here on a tray next to me and I wait, wondering if this nurse, whose sparkling smile welcomed me to my chair before she gamely framed up a nice picture of me reclining, will have a gentle touch with the needle.
It turns out she does. After she sets up the initial saline drip, she verifies the medication bag with another nurse and comes over to get it ready. “It’s only one drug,” she says — no steroids or antihistamines with this one. “Must not be very toxic.” I smile at that. Less toxic I can get behind.
And she brings me a menu — sure, the offerings are sparse, but I wasn’t expecting The Four Seasons. A few minutes later, she sets down a tray with a sandwich, chip, and two drinks. Better service than flying coach. And then there was Alison.
Those of you who have been following my story for the past few years may have caught me make mention of how my previous infusion center was like going to the spa. I always felt like I was treated special there, taken care of nicely, treated like my comfort mattered. But I would rib the nurses there all the time about the one thing they were missing to complete the experience: foot massages.
Well, I practically choked when Alison walked up to my chair and asked if I wanted a foot massage. Turns out it was fortunate timing on my part — she is only there on Fridays and there is only one other massage volunteer who comes in on Tuesdays, and I had very nearly been scheduled for Monday or Wednesday if not for the insurance hold up. But now I am on Friday routines, and I’m not complaining.
A few minutes into my second foot, I told Alison that I felt like I was on a beach. Except for the beeping coming from behind the next curtain. “It’s seagulls,” she offered. I replied, “A boat backing up…” Beep. Beep. Beep. But it didn’t ruin the mood. I was back at the beach. My eyes closed, the chair all the way back, I felt entirely peaceful.
When she was finished, I slept a good twenty minutes. Apparently, according to my nurse, I was snoring loudly enough for everyone to hear. That wouldn’t surprise me — I would have kept at it, too, if my own machine didn’t let out a BEEP right in my ear. But it was time to begin gathering my thoughts.
I’d had a good lunch. I’d had a nice rest. It was still raining outside, but the day overall was feeling pretty sunny. Not a bad way to start something new.
To sit back and wait for the side effects.
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