Reset button

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Back at the cancer center this morning. My arrival here this morning was dramatic, chauffeured by my friend A, and I asked for a wheelchair from the car. This seemed to surprise the porter I see here every week who has only ever known me to walk under my own power. My man at the front desk, Quentin, was not there today. I was hunched down in the chair and J spelled my last name and it was misheard and I just wanted to die to get past the front desk.

On the way to the elevator we passed Dr S, my radiation oncologist. He seemed a little surprised to see me, his healthiest patient, so reduced. (Maybe I was projecting. This is after all his line of work.)

Phlebotomist B worked his magic on my desiccated vein. He never got the letter I mailed praising his skills, so I guess no coffee card yet. Damnit! The little I can do did nothing.

I declined to hop on the scale because it would have meant getting out of the wheelchair, and I wasn’t about to do that. I know I am thin. I know what I’ve lost. I’ve only spent the past two weeks horrified, hunched over the numbers in the dim 4 a.m. night-lit bathroom, wondering if my digestive tract would ever work normally again. If I could ever eat food again with any measure of excitement.

After a brief respite from pain on Saturday (which made leave-taking from Mom much less difficult), yesterday things got serious again. Bad, roiling boiling angry belly. No rhyme or reason to why, no link to anything I ate or did not eat. Pure inflammatory response in all of its hellishness.

Last night I waited until I thought the storm was over, brushed my teeth gingerly (toothbrushing makes me nauseous these days) and got ready for a night of sleep. It was a night of pure torment. I thought of bringing my pillow into the bathroom. I washed my hands 800 times. Every time I dried my hands I tried to summon some courage to go back to bed. Would I have been better off sitting up? No place would do. The only place that would have suited me was far outside my body. But that would have posed logistical and existential difficulties.

By 5 a.m. I was resigned to a white night, but I still tried some Imodium, on the off chance it would help me. I think it afforded me about 30 minutes of sleep before the roiling began again. Any fluid that passed my lips was turning immediately, horribly, to more abdominal pain. So I stopped trying to rehydrate.

Once you make that decision, things go downhill pretty fast. Any pee that comes out looks like dark syrup. You can maybe get your medication out of the jar, but you’ll sit there with it in your palm for a good half hour because you can’t reach the three inches past it on the nightstand to get the water.

At the stroke of 9 a.m. I called in. They told me I had better come in for an IV. I started reading them the riot act regarding the fellows who answer calls so incompetently on the weekend. My voice was a thin, wailing reed.

A friend came to take the kids to school, and once they were safely out of the house, I lost it. A was ready to drive us to the cancer center, but I couldn’t think how to get dressed. J had to dress me and he put up with my steroid-crazed critiques of his style of putting socks on. Once I was dressed, I curled up in a ball on my bed and just wailed. I was reduced, finally, to my most basic state – like a wounded animal. A final touch (which proved unnecessary, thank God) was borrowing one of Abe’s pull-ups in case I had any accident on the car ride.

J wheeled my chair through the labyrinth of the 9th floor reception area and the girl at the desk also looked surprised to see me not ambulatory. I started to think perhaps there was something very wrong with me. A strong hazelnut coffee smell permeated the waiting area and I willed myself not to retch.

Even though I hadn’t seen Dr P in weeks – during more routine appointments you see her nursing staff – she was there today. “You got the bad poopies!” was her opening gambit. Not the funniest opener, but I was in no mood to laugh much, anyway. She said that they’d put a stop to it all with the IV today. That I’d walk out of there. That sounded promising.

Then… she said something else. About it being the end of the road for me with ipilimumab. And perhaps the start of a new drug, PD1. I’m wary, but she says diarrhea isn’t usually part of the package. A rash is. A rash sounds delightful to me right now.

But the thing that probably made me the happiest to hear, in passing, was, “and you didn’t have a lot of disease there to begin with, so…”

My progress toward feeling better was pretty rapid after hearing that.

Medical use

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(Photo by Rob Larsen, drunkenfist.com, licensed under Creative Commons)

Thanks everyone. Really. I appreciate your many, many offers. This is the nature of being seriously ill in 2014 – people offering herbal help. It’s actually legal in my state now, although details on how to access it are sketchy.

I promise I’ll ask my doctor/nurses about it when I see them next. In the meantime, the idea of taking it and then feeling hungry doesn’t exactly appeal, but who knows? Maybe I’ll get over that.

Mother

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

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(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.)

Life becomes movie?

“Bigger Than Life” (1956) deals with addiction to cortisone in a schooteacher, played by James Mason, who becomes a raging monster as his dependency on the drug develops. It’s fascinating, disturbing, and campy.

I did read a lot of bad press about steroids when I first learned I’d need to take them to calm the gastrointestinal side effects of my cancer treatment. Then I woke up and realized it was much more important for me to feel well. I took my first steroid pill almost exactly a week ago.

My dosage started out very minimal, and with each distressed phone call it has increased. I take them twice a day, a much smaller dose at night. I haven’t been having any negative side effects – no sleeplessness,  irritability. Until today.

The kids were at school all day and I slept, dozed, or otherwise flailed around finding every comfy corner of my bed. I’m so bereft at my inability to eat much that bed seemed like the best possible choice. I didn’t feel like reading anything, or even staring out the window at the leaves.

My mom, who’s been staying with us this week and helping enormously, went to get the kids. When I heard them in the hallway, my heart leaped. They came in and I got hugs and was so happy to see them.

And then… I wasn’t. Because they brought their needs with them, surrounding them in a thick cloud. They brought the sense of a schedule, homework, insatiable needs for snacks, and eventually, dinner and bedtime.

Even though I knew everything was covered – that I wouldn’t even need to sit and run through times tables with Young J, that I wouldn’t be expected to wipe Young A’s butt in the bathroom, the whirling vortex of all of these things they would need, from someone, was overwhelming me. My stomach immediately knotted up and I had to retreat to my room, to my heating pad, to my safe space. Later, I needed to work on a journal project with Young A, something I’d been looking forward to, and instead I rushed through it because I couldn’t abide all the excited flapping and flailing of arms and voices around me.

This scares me. Granted, even though I’ve been through a lot and no one expects me to be firing on all cylinders right now, I can’t help feeling ashamed of not being able – and not even being willing – to complete my most basic childcare tasks. I feel like hiding from the world because after all, this is the main thing I do in the world, and I am incapable of doing it now. And my kids didn’t ask for all this, so it feels extra-bad to unload my frustration on them.

I can’t say for sure that it’s a week on steroids making me sink down into this morass of useless thoughts, but I can’t rule it out. I am hoping the inflammation dies down enough to let me feel better on a smaller and smaller dose each day, before my confidence in my ability to handle things suddenly demands other, more grave pharmaceuticals.

Saddest meal ever

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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

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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

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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.

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.