Saddest meal ever

~ illlive ~ Leave a comment
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(image: http://www.somethingawful.com/feature-articles/microwave-dinner-recipes/)

Tonight was parent teacher conferences. Usually we get a sitter and make an evening of it, which is essential because I’m the type of parent who takes every word of what the teachers say to heart, which makes for quite a self-inflicted raking over the coals, generally (especially when it comes to Young J, who has ADHD). I am always armed with tissues and it always takes me by surprise when I am overcome, but that tends to happen to me a lot when it comes to seeing how many people in the world care so deeply about the humans J and I made. And in this regard their devoted teachers always take the cake.

(Cake. Hmmmm. Now I ponder a bucket list of desired foods, which means foods I can only dream of consuming right now with a bucket close at hand.)

So after a conference double-header J wondered if I was up for going out for dinner. There are so many wonderful grownup restaurants in our neighborhood that we underutilize. But tonight not one of them was going to work, with my extremely restrictive diet. I had a momentary flash of us sitting at the empty Indian restaurant, and then we were actually there – the only patrons, watching a photographer slowly take elaborate photos of what looked to be every item on the menu (especially the fried things, or so it seemed to my bucket list).

I ordered, cautiously, a mango lassi and some rice – at least nominally, two things on the permitted list. I ate the tiniest corner of a papadom and immediately decided that would be very bad, because it tasted too good. I ate rice and sipped my lassi slowly. I had to pack it in after five minutes, and focus on conversation instead of eating.

This isn’t my usual M.O. during a meal at all. I was seeing myself turn into an entirely different person. That has been my feeling since the sickness started, that I’m observing myself cope with this from outside and above. If I’m not up for the humor that usually gets me through, I guess I am finding ways to achieve distance more literally?

I came home, ate some plain poached chicken and a banana, and felt like I’d probably never want to get out of bed. Tomorrow will be better.

A strong stomach

~ illlive ~ 1 Comment

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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

~ illlive ~ 2 Comments

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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.

Lucky

~ illlive ~ 1 Comment

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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)

~ illlive ~ 7 Comments

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.

“Ferries” by Robyn Hitchcock

~ illlive ~ 2 Comments

This track on a new album by Robyn Hitchcock hit me where it counts today. (It’s actually a cover of a song by a band called I Was A King.)

I transcribed the lyrics (I hope correctly), because one of my kids is obsessed with ferries, and because the chorus is a perfect depiction of me leaving the house for treatment, crossing the street for the subway and looking up and seeing both of the boys waving at me like mad.

Ferries

The ferries and starry skies

The lanterns, the lack of light

Reminding you of everything you have

Still missing the pouring rain

But you won’t return again

You’re laden – there is nothing more to add

CHORUS

Did you see us by the window

Waiting for a sign?

We won’t rest until

We know that you are fine

Still missing the pouring rain

But you won’t return again

You’re laden – there is nothing more to add

It’s the final call

The last way back

The lights will go out anytime

And you still are out on your own

CHORUS

The end of another day

It’s time to be on your way

And from the sea they blow the final note

Cause ferries are out tonight

But you cannot make it right

It’s been forever since you lost that boat

CHORUS

In medias res

~ illlive ~ 4 Comments

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.