Back to normal. Which is to say, we greeted this Monday in our customary way – ill-prepared, waking at 6 but not sentient or verbal or effective until 7 or even much later (if you were Young J and got up on the wrong side of the bed and then decided flipping the whole bed over – metaphorically – would solve things). We are simply not a morning family. I hovered and tried to do what I could, but ultimately the chaos sent me retreating to the safe house of the bedroom, where I could contain any collateral damage I might cause by trying to handle an explosive situation while still on crazy-making steroids. I sorted laundry to fold, then became too exhausted to fold it.

This morning heralded the return of our cleaning person (I’ll call her Rosa, not her real name), whom I’d called off last week because I couldn’t face the turmoil. J and I (meaning all J) spent the weekend getting the apartment ready for a cleaning. Things were shifted, decisions were made, and my primary contribution was expanding the shelving devoted to books in the boys’ room, now that board books give way to I Can Read and Hardy Boys and Tintin and other multi-volume series. The stuffed animals, which had been permanently spilling from their compartment, are now imprisoned in two shopping bags. I’m unsure of their fate. I think the kids are too.

While I waited for Rosa to arrive, I did the “small” task I’d left for myself this morning, after folding laundry: switching the boys’ duvets to the winter ones. As soon as I began I realized my folly. This is an insane workout under normal circumstances, and in my condition it was beyond what I could do. I have noticed, however, as you may have if you’ve been reading along, that I possess a certain amount of stubbornness which often gets me past the point of no. It gets particularly strong when it comes into contact with IKEA products (like the duvets).

Three weeks ago today, the first day of truly bad stomach, I had gone to IKEA to pick up a cabinet J decided we needed to replace a flimsy one in a hallway closet. I took the item name and went, unquestioning, to the warehouse (despite my dodgy stomach). I arrived at the correct shelf and bin and realized the package in question was a box weighing 77 pounds and measuring five feet tall. I had 90 minutes until I needed to pick up Young A from school. I made what I felt was the only sensible choice – slid the box off the shelf onto a dolly, crushing various fingers, paid for it and my dozen packages of paper napkins, wheeled the thing to the garage, folded down the back seat, and wrestled until I’d got it in (a few more fingers down). I had the same sweaty exhilaration I felt when I got Mom to her bus the other day, an against-all-odds triumph that transcended the sheer stupidity of what I’d gone through with. The cabinet? Remains boxed. It sat in the car for two weeks until J had a neighbor help him carry it up the stairs, neither of them sure how I’d even gotten it in the car. It is now the cabinet of my unwellness. Perhaps it will never be assembled.

Rosa arrived. I’d very much been looking forward to speaking with her, catching her up on my ordeal, which would be pleasantly distanced by my telling it in Spanish. When she arrived, though, I was on the phone with Nurse Practitioner K, who was overjoyed at my progress but still unwilling to drop my dose of steroids, at least until tomorrow. And given my Very Stupid Mistake with avocado salad of a couple weeks ago, she made sure to tell me I should continue to steer clear of avocados.

I got off the phone and gave Rosa a huge hug. She stepped back and took a look at me and told me how well I looked. You can imagine how that went. I told her briefly what I’d been through and that she can be glad I’m okay, but that I really cannot accept a compliment like that, because I have suffered a lot. She finally relented. She told me how strong I was, and she told me how great God is (not something I am used to hearing from her, but apparently she’s had two friends convinced their faith healed them of cancer). And then told me her life story starting with her husband abandoning her after 25 years of marriage and the tailspin of self-blame that sent her into for over a year, until her good friend shook her out of it and she started seeing a psychologist and things got better. (Where I come from, by the way, this is a completely normal interaction to have with the person who has arrived to clean your house. I wouldn’t have it any other way.) It was a cathartic start to the purging of the house. She’s exorcising the demon dirt from my bathroom and bedroom right now. I can’t wait.

I’ve thought a lot lately about a Yiddish expression that Primo Levi used as an epigraph for The Periodic Table: “Ibergekumene tsores iz gut tsu dertseylin” (Troubles overcome are good to tell). As good as it has been to talk through my pain, through gritted teeth and clenched fists, it is even sweeter to talk over it now, to gain that needed distance where humor (my all-sustaining force) becomes possible.

Thinking about The Periodic Table is a portal for me, straight back to a moment in time so different from the present. My senior year in college, I took an English seminar on the nonfiction novel, with Professor John Russell.

The same semester, I was struggling to get out from under the required junior English class, Expository Writing, which I was going to have to take to graduate. I’d tried to take it once before, and come up against a TA named Jennifer, whose worldview was so completely antithetical to my own I’d had to withdraw from her course as my grades on papers slipped to the C’s.

From high school, I’d known I could write, and I would write, and the occasional roadblocks education tried to throw in my path (which involved trying to get me to learn how to organize a logical argument, compose a coherent thesis, basically how to dutifully fulfill my readers’ expectations) chafed a great deal. It never occurred to me, for example, that my 20-page analysis for my French poetry seminar, on how Pierre de Ronsard’s deafness pervaded his sonnets with images of incapacity, might have been better received if I’d actually had a thesis to stand on. The probable fact that I suffered from attention deficit never occurred to me. I just kept poking down corridors until I found the teachers who didn’t care about that petty bullshit. In a large state land grant institution’s English department, you find them.

Professor Russell had a fantastic syllabus – we read books that were vital and visceral and smart and funny and devastating, like the Levi, and Out of Africa, and e.e. cummings’ The Enormous Room, about his experiences in World War I. There were themes that were important which connected these works – the one springing immediately to mind as a feature of nonfiction novels being the notion of bricolage, French for tinkering, which meant the writers would intertwine disparate threads, topics, moods, in order to evoke the sense of a novel from nonfictional events. That concept, and indeed the whole enterprise of a nonfiction novel, has never been far from my mind since starting this blog.

Professor Russell was a great champion of mine – papers and exams would come back with highest praise (“your coinage is expert”) and it made me regret not having been an English major (I majored in French and Italian literature). I wrote a final paper on Brendan Behan’s Borstal Boy in which I interspersed verses of an Irish song, “The Auld Triangle,” through the sections. The summit of my achievement that semester was being invited to visit Russell’s graduate seminar, where the Shiva Naipaul book on Jonestown, Journey to Nowhere, was being discussed. He’d liked some things I’d said and wanted his grad students to hear me say them. As luck would have it, that day one of his students was giving a presentation at the start of class. It was Jennifer, the TA who had shown only disdain for my writing. I got to sit and watch her squirm as I occupied the seat of honor. It felt… nice.

I finished the semester and faced some facts. I was going to be graduating. I didn’t want to go on to grad school in literature – I was rapidly burning out on reading and writing. I’d been working at the campus library and volunteering at the Library of Congress. It seemed like as good a path as any, so I headed down it.

In the spring, I ran into Professor Russell in the reference stacks. He asked what my plans were. I told him brightly that I’d be starting library school in the fall. His face fell. His kind and grandfatherly demeanor crumbled. “Now, what do you want to go and do a thing like that for?” I was taken aback. As was he, I suppose. It stung. I did not keep in touch. I launched a promising career as an academic librarian (a career which, twenty years on, has all but evaporated).

Professor Russell had been working on a scholarly work, called Reciprocities in the Nonfiction Novel. Many years later, I remembered it and searched the library catalog, and found it had been published. I retrieved it from the stacks, and on a crosstown bus ride, I read the introduction (which had been written by another English professor of mine).

I learned that Professor Russell had worked on the manuscript for many years, never being satisfied with it. He began a slow slide into dementia, and retired. The manuscript had to be taken from him. With the help of his colleagues, the book was eventually published. A copy was brought to the nursing home for him to see. His response? “That sounds like a great book. I’d love to read it.” His life’s work, become a plot twist worthy of any of the greatest nonfiction novels.

(Sorry, I need a nap.) (Sorry, this wasn’t really about cancer.)

So I take it this Danish concept, hygge, is all the rage. (You can pretty much figure it out from the photo.)

We aren’t in Denmark, nor is it particularly cold yet (at least not today). But I am quite cozy right here at home and wanting to deconstruct why.

There’s the obvious – I am finally feeling close to normal! I don’t wake up in the night with a foul cauldron where my belly should be! I don’t wake in the morning with dread after a night of no sleep. I’ve cracked the code that lets me eat frequent meals, even if they aren’t the most desired or exciting.

J has been making beef stew since this morning. It’s intoxicating me, the smell of it. I have no doubt it’s going to be the best stew he had ever made. Even though I won’t get to taste a bite (I may take a teaspoon of the broth).

Does this make me seem like a masochist? I can’t imagine the old me being okay with a situation like this. I am happy about the stew, and happy near it. Primarily because we’d planned to make it last Sunday, and my condition intervened, and it didn’t happen then. We had made the mistake of mentioning it to Young J, however (a boy who wants to know what’s for dinner as soon as he swallows his breakfast). He was incredibly angry and disappointed it didn’t happen. His anger and disappointment have been powerfully magnified lately.

The youngs slept over at their grandparents’ last night. They came back in the afternoon full of stories of apps and movies they’d watched (we don’t have an iPad) and how much apple crisp they’d eaten. Young J sniffed the air, smelled the stew, and I could see happiness and relief in his pale face. At dinner, I know the kids will stop eating and get up and hug the daylights out of the chef, which is what they always do when we’ve done well by their tummies. I’m going to make an effort to eat my two-minute meal at the table so I can witness that moment of stewy abandon. I’ll savor the tiniest taste of the broth, and see how it lands.

But I’m going to really dine on the feeling. The warmth. The slow, careful knitting back together of our family after three weeks in a dungeon.

(Rice krispies, you may not have known, also are super hygge. I sat them in some almond milk for my 4 o’clock, and their crackling was not unlike a fireplace. I put them on my nightstand to warm up a bit and enjoyed the sound and the almond perfume.)

Food – bringing comfort in unexpected ways. Perhaps tonight instead of a pillow I’ll clutch a bag of dried pasta, to bring on nice dreams.

Walked to the library. It wasn’t opening until 1. Will try again tomorrow. But I walked!

Every two hours I eat. It doesn’t take me long to eat what little I can manage right now. Accounting for preparing to eat, eating, and thinking about what I ate and how I’m feeling about it, that leaves about 100 minutes between meals for contemplation.

I just had my 10 o’clock (applesauce, graham cracker, almond milk). It felt good. I started feeling grateful. The mind begins to make less rudimentary connections once you are no longer starving. I started thinking about gratitude, and a poem came to me immediately. A poem written by a friend, a very fine poet, who was crushed by the weight of the world just over seven years ago – prompting a mutual friend to eventually write this. I’d been thinking about her these days, because J and I just celebrated our anniversary. She danced at our wedding.

Here is her poem. Thank you, Sarah. I miss you.

For the Fog Horn When There Is No Fog
Sarah Hannah
(as published on Verse Daily)

Still sounding in full sun past the jetty,
While low tide waves lap trinkets at your feet,

And you skip across dried trident trails,
Fling weeds, and do not think of worry.

For the horn that blares although you call it stubborn,
In error, out of place. For the ridicule endured,

And the continuance.
You can count out your beloved—crustaceans—

Winking in spray, still breathing in the wake,
Beneath the hooking flights of gulls,

Through the horn’s threnody.
Count them now among the moving. They are.

For weathervane and almanac, ephemeris and augur,
Blameless seer versed in bones, entrails, landed shells.

For everything that tries to counsel vigilance:
The surly sullen bell, before the going,

The warning that reiterates across
The water: there might someday be fog

(They will be lost), there might very well
Be fog someday, and you will have nothing

But remembrance, and you will have to learn
To be grateful.

We interrupt this hard-won linear progression toward my health and general well-being with a harrowing episode, the likes of which can only be properly accounted for when the movement through space and time of a loved one towards his or her bus home chafes against the intractable predisposition of a 100+ year old municipal transit system to create general havoc, especially on a weekend.

J took the youngs to a birthday party mid-morning (after a fearsome and long-dreaded tantrum from Young J, who is starting to go to pieces the longer I stay in bed). Then they had flu shots scheduled.

Mom was leaving today. Her bus was leaving at 2 pm from Penn Station, so I would accompany her to the subway station with her suitcase and she would take it from there. She and I enjoyed a few minutes of calm. I made a feeding schedule for myself (every two hours – just like a newborn) and wrote down all of the possible permutations of micro-snacks and doll-sized meals I can “enjoy,” so that I stay on top of things and don’t space out and go for six hours without eating. I felt good and empowered and ready to handle it all. I walked down the flight of stairs and the stoop carrying her suitcase and didn’t feel light-headed at all.

Before leaving the house Mom asked if I’d checked the subway service status online. I had not. I took a look and it said Planned Work. I clicked through to find about three pages of deviations, warnings, and closings. My heart quickened and then sank. We hadn’t allowed for enough time to take a cab. It was subway or bust.

We took a train that doesn’t typically run on our line. I figured I would figure it out as we went, but the more I thought about it, the less sense it made. Before the train left Brooklyn I spied a chance to switch lines, and took it. It happened to involve the longest walk inside a station in perhaps the entire city, from the 4 at Borough Hall to the R at Court St. On a good day, in top physical condition and with no one else on the platform, one might need 15 minutes walking briskly to traverse this underground passage.

But this is me we are talking about, and Mom, who, even relieved of her suitcase (which I was wheeling) cannot walk all that fast. I felt we lost at least an hour, which cannot possibly be true because of the eventual outcome. There was luck in the sense that we were able to use both an elevator and an escalator during this leg of the trip. But I was growing more panicked by the moment (she wanted to be in line for the bus an hour before departure, and it was already 12:40). At one point as I glided down the empty escalator I started yelling up to Mom, “I JUST NEED YOU TO FOLLOW ME AND NOT SAY ANYTHING!” I wonder if Virgil ever said that to Dante?

We arrived on the platform to wait for an R train, and there were no benches in sight. I leaned against a post. Mom said I wasn’t looking too good. I was sweating. Mom opened her magical purse of wonders and came to my rescue with a Jolly Rancher. I popped it in my mouth and my mind went APPLE APPLE APPLE GREEN GREEN APPLE APPLE GREEN and then I was much more calm. (Note to self: Carry hard candies. They are important.) The train arrived and it was empty and we made our local way to Manhattan, Mom seized by guilt at having drawn me into this transit vortex.

The apple candy went down easily and I decided to have a cherry one. Its flavors were unbelievably nuanced. I tasted something Indian, like rose water. Jolly Rancher, who knew a starving person could find such inspiration in your humble taste? After that I was really okay. I was so okay, in fact, that as a true New Yorker I never stopped looking for an opportunity to switch to a faster train. When we were at Union Square, I saw it, and before Mom knew what I was doing I was barreling across the platform to the Q (which, by the way, would have been the better choice of train for us from the get-go). There was someone crossing in front of me and I literally bent my body in half to keep them from blocking our path to the open train doors. Mom said she nearly had a heart attack. I don’t know what I was having, but I was still kind of high on the Jolly Ranchers I’d had so it almost felt like the opposite of a heart attack.

One station later, we arrived. I could have found a stranger to carry Mom’s suitcase up the stairs (as she often has when she is alone). But I had a daughter’s duty to fulfill. I was going to walk her to the corner of 30th St and point her in the right direction, then turn around and take the train right back home. (She had insisted I take a cab back, but I’d had enough of uncontrollable variables for the day.)

And I made it. WE made it. Little Mom and desiccated, half-starved me, walking through Koreatown/Accessories World together. We parted on the corner and it was only 15 minutes later than she’d wanted to be, a miracle considering what we went through to get there.

On the subway ride home I kept my hand tightly coiled around the third Jolly Rancher in my pocket.

Sleep is returning to my fold. I first started believing it when the kids left for school yesterday and instead of tossing around in bed, feverishly typing another post here or refreshing Facebook like an obsessive, I felt my head hit the pillow with a thud. The next two hours I grappled with sleep, even with my hands, feeling as though I was being pulled below the surface of a lake and even though I was trying to fight it, I finally gave in. I woke at 11 a.m. feeling lighter than I have in weeks. I scrutinized my irises in the bathroom mirror and found that the darkness camping out there had moved on.

It’s the steroids. They are dialing me down off them over the weekend. My high score daily dose was at one point 100mg, which sounds scarily high (especially the one day that I had them intravenously). I am now down to 30mg once a day, and after the weekend, if all goes well, it will keep decreasing. I hope by Thanksgiving to be pretty close to a normal facsimile of myself.

I feel the difference – going even from a dose of 40mg to 30mg, there is a loosening in my chest. A lifting of anxiety. I can spend x more minutes with both kids in my bed before shooing them away.

There are still things I cannot quite face – like most of the rest of the apartment. Things have piled up. A lot of things. All of them seem to be made of Legos and books. When I go out to the living room to administer Netflix to the kids, I have to keep tunnel vision or else I start hyperventilating right away. Our cleaning person comes on Monday, after I put her off for a week already because I wasn’t ready for that kind of upheaval. My pre-cleaning regimen, under normal circumstances, is exacting and exhausting, because I don’t like leaving out anything that could be permanently misplaced. My standards are high, and I don’t know how I’ll meet them this time. The kids are off for a sleepover tonight and I have little doubt J and I will spend our evening in cleaning preparation (which will probably involve me barking orders from the couch).

Mom leaves again today. It doesn’t make sense for her to come back next week because of the holiday, so this is another source of stress. I feel as though if I can have everything arranged just so, with most of the kid wrangling handled by others, I can get through three days on my own. I dearly hope I’m not overestimating myself. I feel incrementally stronger, after each meal, after each night of actual sleep. But the gulf between stronger and back to normal operations is still quite significant. Wish me luck.

Last night J and I huddled in bed and watched (well, I dozed on and off through it) the intriguing 2009 movie “Moon,” with the excellent Sam Rockwell as essentially the only live actor, playing clones of himself on a lunar power station. Watching the same person interact with himself in various states of physical decay made an interesting bookend to my ordeal.

The idea to put on our wedding clothes came to me in the middle of the night. We didn’t tell the kids we were going to, we just showed up in them. They, and Mom, were suitably impressed.

Happy anniversary, my love. To better times.

It’s 4:20 in the morning. In the night. A time I have become well-reacquainted with in the past weeks. I become aware now that I have been limiting my window for this period of unpleasantness to two weeks, a moving two-week window of hell, because I keep thinking back to the beginning and realizing, Oh, that? That wasn’t NEARLY as bad as it got.

The actual fact is I’ve now been robbed of three full weeks. And there are certain habits, dependencies, which settle in after that period of time, which may be hard to break.

I spend my day in bed. I do not aspire to leave my bed, because leaving it has generally meant rushing to the bathroom, and an hours-long cycle of pain and relief and more pain filling in where the relief tried. When I am feeling at all better, I get back in bed. Standing up is hard when you have not eaten much, and my height makes it feel like even more of a challenge.

The bedroom has become my fortress. I wonder if I’ll ever continue this blog from anywhere but there, hunkered down with my smartphone.

When a cycle of cramps starts I assume a certain position for self-soothing, rub my belly in a way that does help, fire up my ancient heating pad (it belonged to my grandparents, and when it reaches its full temperature evokes the smell of their old apartment, which is soothing).

What I’ve noticed is that I do this now even when the “pain” is actually a minor gurgle of digestion. This means I’ve downgraded my pain standards. Which had been quite high before. I birthed two boys weighing over nine pounds without much more than some Advil and stitches after. Yes, it goddamn hurt. But there was ample payback there, in oxytocin.

The pain I have been in recently affords no such glory. I haven’t even been able to talk about specifically what the pain is all that much (except here), because it turns out that nausea and vomiting is a lot more socially acceptable to speak about and suggest remedies for than chronic diarrhea. (This seems like a socioeconomic discovery, somehow. Only in a society with ample access to safe drinking water can we afford ourselves the luxury of distancing diarrhea to the furthest corners of conversation.)

Before going to bed last night (nervously, without the second dose of steroids I’ve become accustomed to), I held court for Mom and J and told them feverishly about my hopes and dreams for my digestion. “It’s a whole new world out there,” I was saying. “How often do you actually get a chance to start your gut over again? Maybe I should make some changes,” I said. “This is an opportunity. There have been so many discoveries about how food works. And my metabolism had slowed to a halt anyway.” I spoke of caffeine, and other ills and other promises.

Mom and J sat there nodding and bemused, enabling my rant but not encouraging it. I hadn’t chosen the right audience for this sermon. My father, a long sufferer in matters of digestion, would have engaged me immediately in matters of science and nutrition. There are scores of friends on Facebook standing by with advice for me. But I don’t know that I’m looking for a conversation just now (except by phone, in the morning, with the nutritionist at the cancer center, because I am afraid to face the weekend without her guidance).

I’m not looking for a plan yet. I’m not looking for strictures yet – there are more than enough of those. I don’t want to find a forum or self-identify with any group.

I suppose what I want is to return to how and who I was, but with the knowledge of my present suffering never far from me when I decide to eat something. Eating for me has long been a tool of anesthesia, a tool for distancing pain. I know that isn’t healthy, but it’s something I learned long ago from Mom (who has herself been on a long journey in this regard, and is currently in triumph and is my hero for it). When I’ve been really sad in recent days I’ve tried a meditation of walking through my neighborhood and stopping in each place that sells good things to eat (and there are, of course, many) and imagining myself tasting each thing for the first time. It was satisfying… until it wasn’t. (And I kept going back again and again to the place with the Brussels sprouts.)

Somehow I have managed to raise kids who have a much greater sense of balance and proportion when it comes to good and bad eating than I ever had in my little finger. They hauled in an enormous bag of candy in an hour on Halloween afternoon. There was intense interest in it for exactly 36 hours. It has since sat in a bulging shopping bag on a high shelf, untouched and unrequested and possibly even unremembered. Halloween was the very start of my troubles, and as is my way, now that I write about it I want to feel guilty that my pain eclipsed the presence of all that candy. But that’s not it at all! Young J drinks green juice because of the broccoli content. Young A snarfs cherry tomatoes and edamame like candy. These are healthy eaters and yes, they like their sugary treats, but they have their heads on straight about it all.

Which is the most I can hope for myself, and soon please.

I want to believe. In the upswing, the righting, the great correction.

After a blast of Remicade yesterday I was told I would start seeing some improvement. But I also heard that it might be possible I could need another dose next Monday. Thanksgiving was brought up (not by me, as I’d been assuming all along I’d be fine for that – placing my faith in The Great Pumpkin, I suppose). No one saw a reason to say I couldn’t go. Turkey is a good food for me right now. (Other regular features of our festive meal, like empanadas or my mom’s famous cheesecake, not so much.) It feels good to believe the rosier forecast, but I’ve been smacked down so many times in the past couple weeks that it’s hard not to be cynical.

I had a long chat with the social worker while I was getting the infusion yesterday, but it wasn’t the one I’d already developed a rapport with, so mostly I just kept my eyes shut, talked, and cried. It was fine. But I treasured our even longer chat with the nutritionist more, because it provided the essential information for building me back up again, safely.

Last night J went to shop for the tools of my rehabilitation: coconut water. Canned peaches. English muffins (white flour). Today Mom bought some more items: a chicken breast, pastina. Young A stayed home sick from school today – he is my canary and often succumbs to illness when I do – and my heart almost bubbled over with happiness to have Mom here tending to us both the way she tended to me when I was his age and home sick from school. Chicken soup with stars. I left my room and went to sit at the table to eat – my first out-of-bed meal in days.

Young A was happy to see me there at the table. He’d eaten his soup and the pasta they’d packed him for school before he decided he wasn’t going. He popped grape after grape into his mouth. He’s grown up a lot in the past two weeks. His whole face has changed. I want to believe he’s leaning out, stretching into five (three months from now), leaving the baby behind. I can’t quite excuse myself from this transformation. (I’ll stop there, short of catapulting myself on another fruitless guilt trip.)

I feel like I am taking my very first steps from the cave. I feel my strength returning literally by the hour. By Friday I may even be able to walk to the corner, turn around and come back.

Please know this. When I stand at the mouth of the cave, I am going to raise a large club in the air. And I am going to tell anyone who will listen what it is like to lose (as of this morning) 15 pounds of your body weight in two weeks. To spend your days tethered to the bathroom or coiled around yourself trying to quell the great pain your belly is causing.

And then I’m going to stand there and wait to hear what you have to say. Here are some helpful hints. You can tell me it’s awful. You can say nothing and give me a hug. You can tell me you cannot imagine it (I surely could not, until it befell me). You can send flowers (as a friend did last night) or feed my other senses – tell me a joke. Or read me a poem.

What I never want to hear from you about this is that I look great. This is not a concept that has been part of my worldview before or now, and your insistence on bringing it up will make me hate you.

Had you liberated a camp, would you have said this to a survivor of the Shoah? Then why on earth would you say something like this to someone who has clearly been suffering in such a way?

I have heard this from people who should know better. And who acknowledge it and then persist in saying it. And to those who would persist I just say: Picture me at the mouth of the cave. My club is aloft.

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.