You Can’t Be Any Poorer Than Dead

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Flannery O'Connor in her driveway in 1962 (photo credit: Joe McTyre)

Home again. Back in bed again. This time feeling less dreadful and dread-filled.

Another wheelchair ride into the cancer center this morning. This time Quentin was there and asked me what was wrong. I didn’t go into clinical details, but then a second later I had to because we again ran into Dr. S, radiation oncologist, who was seeing me chaired in twice in the same week and needed to know what was up. My mom heard his last name and started speaking Italian.

Today I didn’t have any doctor visit. I was on a fast track to the infusion floor and the nurses met me there. When they come down to a different floor for you that’s when you know you’re extra specially screwed. Nurse Practitioner R met my mom. So did Research Nurse C. I was steroid-crazed and cranky – so what’s new? It was still so, so good to have Mom there, even if I made her adjust the temperature of my drinking water about twelve times.

I wasn’t too badly dehydrated today, and I had even managed to eat an egg and a piece of toast this morning (which didn’t feel so good ten mins later) so I was able to stand for more than a millisecond. What a concept, verticality.

Today, the main goal was to STOP the colitis provoked by the ipilimumab. They did this with a drug typically given to Crohn’s patients called infliximab or, more charmingly, Remicade. The only thing about Remicade is, once you have it – it’s curtains for ipilimumab. I know I’d swallowed the ipilimumab sales pitch and I really wanted to stay with the winning brand. But it’s killing me!

And the fact is, there is more than one way to skin this cat. Once my gut stops roiling and I am feeling better, they will do another scan, probably in late December. At that time, they will see the size of my tumors and assess if I am even in need of further treatment at all. The tumors don’t just disappear right away (at least not usually – though my experience has been so singular that I do hold out hope for that kind of miracle to legitimize my suffering), but they can tell if they’re shrinking. If I do need more treatment, it will be with a newer cousin to ipilimumab, called PD1, or Keytruda (still not loving the naming conventions here), which apparently doesn’t pack quite as much of a wallop as ipilimumab, side effects-wise. It’s perfect for ipilimumab flunkies, like me.

I got a wonderful foot massage today. I managed to get my mom to order and eat a pastrami sandwich without feeling guilty about eating near me (“I am on another plane of consciousness right now” I told her). And best of all, a good long chat with the nutritionist, who gave me sensible tips for becoming an eater again without great pain and setbacks. My gut is basically like a newborn’s right now. It will take time to nurse it back to a state of omnivorousness. Tiny meals, tiny bites. I’m going to be obsessed with food in new and terribly unexciting ways. I’m going to learn how to stop poisoning myself while I am healing.

All this sounds good, but tapering off the steroids – the current main goal for the team, me, my brain, and the entire universe – is the main thing I’ll be attempting this week. Wish me luck for a seamless return to not-crazy.

Purgative/Purgatory

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I’m heading back to the cancer center this morning for more drugs. One in particular, infliximab, which is supposed to arrest the colitis-like symptoms that were brought on by my gangbusters immune response to ipilimumab. They want to get me off the steroids. I want to get me off the steroids. Win-win, let’s hope.

While I wait for a callback from the doctor, who somehow neglected to tell me when she called me at midnight last night whether I do or don’t take steroids this morning, I’m going to try to purge my mind.

It’s two days away from my tenth wedding anniversary. What J and I were going to be doing this weekend: spending it in a fancy hotel with a good bathtub. Eating lots of great meals without the kids, wandering around and visiting galleries. Napping. “Reconnecting.”

None of that is happening now. I can’t do any of that – and a bath is the last thing in the world that would feel good to me. I’m living in a state of near-constant agitation, under siege from within, and the only semi-coherent thing I’m able to do is post here. I can spend time with the kids only in short bursts (last night I did story AND lullaby at bedtime and it was very, very difficult). I can barely even get out of bed. It’s kind of awe-inspiring to see just how low I have been laid, but I am rabidly curious to see how quickly I can bounce back.

My relationship with J feels so uneven right now. I can offer literally nothing to him. He is doing all of the giving, nurturing, heavy lifting. I’m transported back to the bleary days after the kids were born, when he was in the same role, just as sleep-deprived as I was but still devoted to making things work. He is a resolute doer, a solver, a fixer of problems. Which makes him, I guess, the perfect match for me, feeling as I do now like an inexhaustible source of new and shitty problems.

At our wedding, J serenaded me with this Dylan tune, which he had sung to me over the phone when we were first dating. I hope that everything about me will stop bringing you misery, babe. And soon. I love you.

http://vimeo.com/m/86346303

Vouloir et avoir

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Doughnuts by Jenny Kaczorowski on Flickr licensed under Creative Commons

Adrift on that gulf between wanting and having. I’d love a stack of doughnuts that look like a hamburger right now. I could also plow my way through an entire tray of roasted Brussels sprouts with Sriracha glaze. A crate of raspberries. Or just a cheese pizza. A bowl of fresh radishes with salt.

It took me most of the day to get out of bed to make a turkey sandwich. Then I ate it and immediately got hiccups because it was sort of like gulping sand. I washed it down with room temperature Gatorade, which is what my gut can handle right now. Then for a treat I ate the only fresh fruit I can have right now, a banana. It’s warm in the apartment and the bananas are a little spotted and when you eat one like that it sort of lingers. Not good.

I’ve been avoiding at all costs looking at food websites but just absent-mindedly clicked through a slideshow of top dessert spots in my city. At a remove of weeks from any indulgence remotely approaching those pictured, I felt like an anthropologist. The photos did not arouse much beyond curiosity, and certainly not anything approaching desire. I wonder at this. I wonder if I should mourn about it, or be grateful for it, or both at once. I know I am grateful it isn’t a permanent condition.

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.

Thoroughly disgusted

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I had a little glimpse yesterday of what feeling good felt like. It was enough of a glimpse to give me hope. Then I woke up today in as bad a situation as I have been over the past week, and it wasn’t a great day overall.

J has got to be burned out. He shuttled the kids across the city today, from a sleepover to lunch to clothes shopping to their respective playdates and back home for dinner (and then an extra outing to retrieve a forgotten fleece). Somewhere in there, he  made chili for dinner. It smells great. I don’t know how he managed to do all that. It certainly is more than I’ve ever endeavored to do in a day with the kids. I feel like I’m being unfair, pushing him to be Superman in direct contrast to my utter incapacity right now. He hasn’t complained. He won’t. But he should.

What I managed to do today was: eat half my breakfast, take my medication, pass out for a while, eat a little soup and lots of French bread (perhaps too much bread), pass out, watch “Roman Holiday” on my phone (that’s taken about two days), and work my part-time library job in the evening, which involves sitting by a laptop waiting for people to ask me questions. Except tonight there were very few questions, the ones that came in irritated me, and I had to interrupt my shift when I was seized by a brand new symptom, vomiting. I signed off a few minutes early.

I sent an email to my boss explaining my situation. I can’t be expected to work right now, even if the work is as minimal as that. The temptation to just close out a session without answering the question is just too great. The temptation to be mediocre and unhelpful is alien to me and yet that’s just what I was feeling like tonight. Very little empathy for people who cannot solve their own citation problems. Or find an eraser to use in the library (wish I were kidding on that one).

Speaking of mediocre and unhelpful, that has been my exact experience with the fellows I’ve spoken to on the phone over the weekend when I’ve had questions and my doctor and nurses aren’t available. Last weekend the guy simply wanted to know if I thought my eye pain was bad enough to have to go to the ER. That was all he was interested in.

The fellow I spoke to tonight was marginally better, but betrayed zero awareness of my treatment. I was asking if I needed to re-dose myself with my evening complement of steroids, because I’d vomited two hours after taking them. He said, “And you are vomiting… because of chemo?” NO, I AM NOT. I HAVEN’T VOMITED IN OVER A WEEK. IT’S IMMUNOTHERAPY. I AM NOT HAVING CHEMO. EVEN A FELLOW AT THE CANCER CENTER IS APPARENTLY UNABLE TO UNDERSTAND THE DIFFERENCE.

Hello. This is why this blog is here.

My stomach, by the way, seems to have grown used to and now prefers being empty. How great is it if I’m somehow developing an eating disorder while going through this? What a bonus.

Into the light

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Image by John Harvey on Flickr, licensed by Creative Commons

I’m feeling better? Cautiously said, in a small thin voice, with a chest tight from too many steroids, too much interrupted sleep, too much pain and an excess of worry. I ate a small meal and it didn’t cause any trouble whatsoever.

There is the sense of an armistice. The terms are still being hammered out. But for the time being, there are no active battles. The soldiers retreat to the trenches and play some checkers. Or whatever they did when there were still trenches.

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

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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.)