bad stomach

Applied to the period of ipilimumab-induced colitis, November 2014, aka the month that will live in infamy.

Mother

~ illlive ~ 4 Comments

It doesn’t matter how old you get. There are times when only your mother will do. I know I am so lucky to still have mine.

When Mom is here my food comes on plates and in glasses and cups – eating from containers is frowned upon. And I know she’ll wash those plates, glasses and cups, so I don’t have to.

When Mom is here, the kids are enveloped in everything they need – new toys, books, sugary treats, excellent lullabies, and abundant love.

When Mom is here, I remember how I got so strong and so weird and so unwilling to stoop to convention. (Maybe I also remember how to scale all that back a little.)

As a kid, when I had problems at school, Mom would listen to my tale of woe, and then ask me if I wanted her to punch the perpetrator in the nose – it didn’t matter if it was another kid, or a teacher. I knew by her saying this that I had her in my corner, and that I had nothing to be afraid of. I also knew I could never, ever accept her offer, being certain that she would actually go through with it.

Two weeks ago today, when I first started feeling lousy, I called Mom to chat. She had been in a serious car accident minutes before, and the ambulance had yet to arrive. Even though she had glass in her mouth and her leg was pinned in place, she answered the phone, because I had called. I knew she was going to be OK, because she had answered the phone. And she was. The EMT had to put his face very close to her face while they extracted her from the car, and she asked if he was going to kiss her. (Not on our first date! he replied.)

Mom has been through a lot recently – not one, but two bad car accidents, a broken knee, weeks of tending to my dad after a brain hemorrhage, a lost iPhone turning into a stolen one, her sister and brother-in-law in declining health – and yet here she is supporting me, as always. The week has been like a good dream of childhood with her here, despite how awful I’ve felt. I’ve slept like a baby during my naps, released of a need to keep my schedule. She has kept me in check when the steroid-crazy threatens to overwhelm me.

And… she leaves tomorrow. I love you, Mom.

One foot in front of the other

~ illlive ~ 2 Comments

image

(Image by decar66 on Flickr, licensed under Creative Commons)

I spoke to Nurse Practitioner K this morning, after another night of not-so-good. Emotional response to the steroids notwithstanding, they are actually going to increase my dose slightly. I can also take over-the-counter diarrhea meds. This should hopefully get me through the weekend. I have not eaten nor drunk anything on the forbidden list in the past day, and yet my misery continues.

However, I realized while talking to her that my main focus is really The Drug, and when I can get more of it. (Because of course it feels so great to be on it?) It’s become my main life’s goal, to get back to the infusion room and get that IV in my arm. They can’t do it while I am this sick, though. Which means probably not next week either.

Turns out I’m thinking about this all wrong, according to Nurse Practitioner K. She reminded me that in immunotherapy, the point is to let the drug provoke an immune system response in the patient that will help them fight the tumors. So in fact, even though I have only had two of the initially forecast four doses, the discomfort I am feeling right now proves that I am in fact having a full-on immune response… it’s just not a very fun one. But just because I am uncomfortable doesn’t mean the tumors are not also getting their asses kicked.

It’s not very binary, is it? So disappointingly few things are. I need to stop making notches in my belt when it comes to this process, because that clearly will leave me nowhere. I need to let go and let science. It would help if I could comfort myself with food, but that isn’t practical or wise right now. Yoga has never been my thing. Meditation? I reckon that’s what I’m doing here (except I have an audience).

Lying in bed helps to a point, but eventually one has to get up. Today Young A has a special program at school and I don’t have a choice, I need to be there. So I will pull myself up by my camisole straps and make my best effort to look healthy and cheerful. I’ll put on a pair of jeans, even – which will probably be falling off of me at this point, ten pounds down from where I was two weeks ago. I’ll try to let Young A’s excitement reach me in a positive way, instead of letting it irritate me.

(Failing that, I can always come back home and crawl back to bed when it’s over.)

Lucky

~ illlive ~ 1 Comment

image

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.

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.