A strong stomach


I’m getting there. Incrementally. By next week I should be raring to go for the next dose. Fingers and toes crossed.

I don’t know what I’m so impatient about – I’m halfway through my doses of ipi. Once they are done, I will have a twelve week wait until my next scan. Twelve. Weeks. I can predict a return to violent nail-biting, stress-eating, or perhaps, if I’m able to rise above and feeling up to it, a return to the gym to keep myself from going insane.

It’s a time of transformations for me – personally, but also professionally. After leaving my library job to stay home with my kid (now kids) seven years ago, I didn’t think it would be a huge deal to slide right back in to a similar job. I laugh at that notion now. Ruefully. I’ve applied to countless jobs, had very few interviews, and no happy endings. This may be the end of the road for me, as far as full-time librarianship.

A few weeks ago, a friend dropped an opportunity in my lap to do some translation work from Italian for a video production house. I was excited, as I’d been trying forever to figure out how to break into a field that seems to be dominated by very skilled self-promoters who seem to have all these official certifications which I lack. And I’d been hoping to find work I could do from home. And suddenly, here I was, sitting in my living room (not in PJs, I’m not that far gone yet) and doing interesting, fun, PAID work. And they like my work and are sending more and I may be getting a credit in the show. That’s the most satisfying thing to happen for me and my brain in a long time.

Last night I attended a workshop on getting a nonfiction book proposal together – another way for me to open a new channel. I’m pretty happy with this blog so far, but it’s purely situational right now, and there are a number of other topics I hope to take a longer view on as far as cancer goes. A longer view than the one from my navel – which isn’t quite as ripped as the one above… yet.

Treatment diary


Today I had my next date with the movie star, ipilimumab. It didn’t quite work out for us. Given my intestinal distress of recent days, the team decided to postpone my treatment for a week.

On the plus side, my blood work looks good, and I’m not dehydrated at all. I’m glad it’s just a postponement. Nurse C told me confidentially that sometimes they even have to skip a dose. (I was not going to be OK with that.)

On the plus plus side, my fave phlebotomist B coaxed all the blood he needed from just one arm, and I found out by asking about a badge he was wearing with sneaker stickers on it that he can earn a gift card for coffee if enough people write letters to his boss telling them how great he is. He has three out of five stickers already. WHY DIDN’T THEY TELL ME? He deserves more than free coffee. He was so awesome and calm when I was in there, shell-shocked, after my collapsed lung hospital ordeal, and freaking out at the number of vials I was going to need to fill (and there were about 20, because it was the start of my participation in the research study).

They gave a plan for getting off the steroids and I hope I don’t screw it up. Lots of dosages, dates, phone calls I need to make. Fighting cancer and its side effects is now my job, so I’d better not do it half-assed. That was not a diarrhea joke.

I left and got a small chicken and rice soup at a deli. It tasted more like chicken broth, rice cooked in butter, carrots and peas soup. It was delicious and it has gone down easily.

Which is my primary metric for food now. If I do not have to rush to the bathroom after eating, it is a noble and worthy food. It’s the new umami.

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.