(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.

“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.

I needed this day. It needed me. My pajamas and I are in a committed symbiotic relationship.

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.

http://youtu.be/gxfMUVWpGkM

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.

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.