It’s a perverse time for me to be writing about luck. I am not feeling like the luckiest person right now. I can’t eat much, am finding Gatorade more delicious than any cocktail I ever tasted, and the peanut butter and honey toast I ate yesterday morning almost blew my mind with its robust flavors. (And then made me feel lousy, again.)

The fact remains I still sort of am. Lucky. I’ve felt that way about a lot of things in my life – career opportunities I had, meeting the man I married, the school our kids attend – so many small and large things that I can only trace back to being lucky.

Back when this all started – what drove me to get a skin biopsy on a patch of skin that had already been checked? The conviction that something just wasn’t right there. (OK,  that’s more intuition than luck.) In my gym class I’d lie splayed over the Bosu ball and feel it pressing against that patch of permanently sore skin in the middle of my back. I needed to get it checked again. Of course, I didn’t expect the grim call from my dermatologist that followed the biopsy. But what if I’d not listened to that voice telling me something was amiss? Let the bad cells run rampant until I was well and truly screwed?

I sailed through my initial melanoma treatment as easily as could be imagined. And then I proceeded to distance myself as far from it as I could possibly go. I would show up for my checkups, sure, but this was all a formality and anyone could see I was through with this. I kept hoping Quentin at the check-in desk of the cancer center would even forget my name and face between appointments (turns out he never, ever does, and he really likes my new haircut). I thought luck would keep me from becoming a repeat customer.

It strained my sense of luckiness, then, to hear I was back in Cancerland this fall. I didn’t feel lucky, I felt creeped out, because the enemy had burrowed further in, gotten into my lungs, which have already been on notice the past few years for failing to stop me from developing pneumonia when I get the slightest infection. I didn’t feel lucky when I went in for a lung biopsy, and wound up with a collapsed lung and a two-day stay in the ER.

But once the data was in, and we knew who the enemy was, a chat with Dr P restored my sense of luck. “Five years ago, you would have been in much worse shape,” she informed me. The drug I’m getting was approved in 2011, and has been a game-changer. And if this melanoma drug doesn’t take, they are now able to sequence the DNA from your tumor in order to customize further treatment. Dr P even went as far as to say that today, metastatic melanoma is becoming more of a  condition to be managed, like high blood pressure or diabetes. Now that is a hell of a pitch. I’m buying it.

Until this past week, I felt still very lucky, because I was sailing through treatment without any discernible major side effects. Sure, I was eating everything in sight (my default stress response, unfortunately), and I was a little more tired than usual, needing a daily nap before going to pick up the kids from school. But I was fine.

Lying here now, having tripled my dose of steroids this morning, which seems to have calmed the roiling in my belly, I feel a sense of calm that has been absent all week. I feel centered. I’m not worried about a potential one week delay in my treatment schedule (until I am back on track digestion-wise). I am still starved, but not experiencing the headache that usually accompanies hunger for me.

I am lucky. I am insured, I live in one of the best places in the country to have a serious illness, I have a community which is coming through for me and my family in so many important ways. I’m going to be fine. And keep feeling lucky.

Support (pt 1)

While I’m preparing a longer post, let me just tell you a little bit about what trying to Google your symptoms is like when you have cancer.

I’m a librarian – if nothing else I know how to construct a good search. (As a human being I should know not to use Dr Google, but never mind… ) So I look for the drug (by its clinical name) and then maybe the particular symptom I am experiencing (I think the technical term is HellBelly). And I find site after site that reproduces the consumer leaflet from the drug maker: “In 66% of patients, ipilimulamadamadingdong was found to induce HellBelly.”

And I see that about 500 times. But then maybe, if I’m lucky, I find a trail of bread crumbs leading to a discussion between actual patients, not percentages, who are experiencing these actual symptoms now or were at whatever point in the past (say two years ago) that they were afflicted. And there’s usually a lot of back and forth and needless comparison of how bad their HellBelly got.

Yeah, so I did a little Dr Googling tonight. Found a patient on a forum who lives in my area, and who was getting treated with the drug I am getting, and having a bad case of HellBelly too! Maybe even worse than mine, it remains to be seen. But I can’t leave well enough alone, can I?  These posts are from two years ago! WHERE IS SHE NOW???

So I fumble around until I find the password I set up for that forum (ill-advisedly, because it’s like hanging out in the worst bar in town, where they don’t even pretend the glasses are clean and that the premises aren’t infested). And I look up this person. And her last post was five months ago. And she sounded very perky. But she had been through some serious shit. And was about to go through more serious shit. And everyone wished her well.

And she’s never reported back.

In medias res

Starting in the middle of the story seems as natural a way as any, given I’ve put off starting this blog for probably 18 months. In the middle of the action. In the middle of the bad action dream.

It took me down a peg this week – my cancer drug, the miracle drug, ipilimumab mon amour, the one that barely makes you sick (according to the sales pitch I chose to hear). It does give some patients diarrhea, yes. Rash, too. Those were the main drawbacks presented.

It took me down two pegs, then a notch, then six notches down the post and over to the left a little. All the knobs turned down to 1. That’s how I’ve been. Halloween was where it started getting bad. That was nine days ago, but could also be a year. My connection to the outside world has been tenuous this week, strangely mediated by my glasses (eyes have been too sensitive to wear contacts). I can’t remember the last time I used cash, rode the subway, or even left the house. The worst has been inability to eat without pain. Food is central to me, it’s as much a coping mechanism as humor. I had instant empathy for everyone I know with chronic digestive distress.

The cancer drug is the bigger dog. The stomach pain of this week is the smaller dog, always the one to cause the fuss, to assert itself, to yap the loudest. Give me something to think about beyond The Cancer. Luckily the kids were at school all week, but the one evening I had to be with them on my own, when things were at their worst but the oncologist hadn’t yet decided to go ahead and prescribe steroids, they watched wide-eyed while I rubbed my belly and moaned because it felt like I was being stabbed, repeatedly. It was like labor without the payback. I became badly dehydrated. My eyes hurt. My eyes felt like they had been impaled on popsicle sticks and subjected to severe beatings.

And then yesterday I took a dose of a steroid, and within 90 minutes I was feeling generally good (although still completely tapped out and barely able to motivate myself out of bed). By dinnertime I was feeling so cavalier I had some avocado salad. And then I had a lot more. All the nutrients were dancing and my mouth felt alive again! Eating is fundamental!

The violent smackdown happened almost immediately. Fresh veggies and fruit will need to wait a while. This morning I restarted my regimen and have not yet fallen prey to anything remotely fresh.

I’m a machine and this is a systemic take-down. A reboot. This will tear me down and rebuild me, like the Bionic Woman, but without the circuitry. Here’s hoping.