A Year After My Hodgkin’s Lymphoma Diagnosis

A year ago yesterday, I found out I had Hodgkin’s lymphoma. That day, if you would have told me I’d be putting duct tape all over my head a year later, I may not have believed you.

This past year has seen me do a lot of things I didn’t think I would or could do. I’ve been through six months of chemo. I’ve given myself blood thinner injections. Until this past month, I’d never been in the hospital overnight. I have nine radiation tattoos. I’ve shaved my head three times.

That last part brings me to the duct tape. On Saturday and Sunday, I noticed all my hair was falling out at once. I could just reach up and give it a slight pull, and it would easily come out.

I was thinking of just pulling it all out, and I started to do so Sunday morning, but got bored, so we decided to shave the rest off. I’m not sure who reads this, but if all your hair starts falling out after augmented ICE, just pull it out, no matter how long it takes. When I shaved it, I had stubble left. But it hurt. When I put my head on a pillow or touched my head, it felt like tiny needles in my scalp. The places where I’d pulled it out felt nice and smooth.

On Monday, I was desperate. I asked my boyfriend if we had duct tape. At first, he said we didn’t and he added that he thought pulling out my remaining hair with duct tape was a bad idea. He argued that you didn’t know what was on the sticky part of the tape. But since I’m regularly being injected with chemicals that kill all my rapidly-growing cells (including my hair and those is my stomach lining—and hopefully the cancer), the toxicity of duct tape is the least of my worries.

“We do have duct tape, but you’re not using it on your head,” he finally admitted. Killjoy.

I spent lots of time putting masking tape on my head.

I spent lots of time putting masking tape on my head.

I tried packing tape, but that pulled out only part of my hair. And then masking tape, which worked a little better. If you’ve ever wondered what it’s like to apply masking tape to your whole head and pull it off, it’s as tedious as it sounds. I would never try it, obviously, when your hair wants to be attached to your head. But I just needed to get these remaining hairs. I was obsessed.

After another night of prickly sleep, I begged my boyfriend to look for the duct tape. He really couldn’t find it this time. (Or so he claims.) And then he “forgot” to pick up some at the store. I applied more masking tape to my scalp.

Then, yesterday, I noticed a painful bump on my arm, near where one of the chemo IVs had been. I recognized this as signs of a superficial blood clot, which I’d had on my other arm during the ABVD chemo. I called the doctor and had to go in for an ultrasound and rescheduled a work conference call.

The results were two superficial clots — not serious (but painful) clots in my right arm. Since I am having a leukapheresis catheter put in on Friday, I can’t take blood thinners. (On a good note, this stays in for the remainder of treatment and my arm veins get a nice break. Overall, though, I’m really grossed out by having tubes sticking out of my chest for a few months.)

The doctors told me to apply warm compresses to my arms. I forgot to pick some up, so I’ve been thinking about applying the cats after they’re done sunning themselves or after the big white cat is done absorbing the heat from the space heater.

What I did pick up on my way to the ultrasound, however, was duct tape. (And a Snickers egg. Snickers are my favorite candy bar, but they lose something in egg form. I think the carmel, nougat, nut and chocolate ratio is compromised.)

Free at last!

Free at last!

Upon returning home, I triumphantly applied duct tape to my head (and ate half of my Snickers egg). And — just as I thought — it removed my hair. I am free of stubble and smooth-domed. I’m pretty sure my hair won’t grow back until May or June, so this will be my look for awhile. And, unlike last time, nothing is left of my hair.

During this time of baldness, I’m always kind of at a loss of what to do in the shower. The majority of the time is spent washing my hair and shaving. I could take up singing my bald theme song, but I don’t have a very good voice. I’ll probably just exfoliate.

Despite his reluctance to assist me in applying duct tape to my head, my boyfriend assures me that I’m not funny looking. But I had been reluctant to wear one of my usual sleep T-shirts, and I couldn’t pinpoint why. It has the logo of Cleveland goth band Lestat, with a depiction of Nosferatu. I inherited this T-shirt in high school from a friend’s older sister. Today, when I looked in the mirror while brushing my teeth, I realized that there were two bald people with prominent ears displayed in the reflection. After I emerged from the bathroom, my boyfriend looked at my shirt and then at me and said, “Hey, you kind of look like…”

That guy on my T-shirt looks familiar...

That guy on my T-shirt looks familiar…

“I know,” I said. I’d hoped if I ever looked like a vampire, it would be one of those sexy, preternaturally good-looking Anne Rice characters. I suppose this is what I get for those years of being goth, emulating that vampire look: Nosferatu. Be careful — or very specific — about what you wish for.

Speaking of vampires and blood, my blood pressure’s been very low. I’m not sure why. If I had to venture a non-medical guess, I’d say it’s because I’ve been pretty calm and haven’t been in public much. My blood pressure’s usually a little on the low side, but I wonder if my Frank Costanza-like short fuse raises my blood pressure and keeps it normal. (Serenity now!) I’m not sure what I should to do raise it, other than stew about topics that upset me, like flip flops on the train, Doritos Tacos Locos or that new Kevin Costner movie that looks so bad it makes me angry that Hollywood continually expects us to watch some of the terrible films they keep making.

Aww...

Aww…

In the meantime, I haven’t gotten around to applying a cat to my arm. But this evening, my arm clots really hurt. As I whimpered and cried as I tried to extend my arm, one of the cats came over and put her paw over my hand and licked my knuckles. (Aw.)

To his credit, the other cat is not without his own sweet gestures. A few weeks ago, I felt a little overwhelmed by everything and just put my head down, face-first on the bed. I was about to cry when I felt a sandpaper tongue on my head and a paw patting my head. I suppose it’s possible I had crumbs in my then-short hair, but I’d like to think he was comforting me. He may never understand how to get treats out of his toys and he may lack feline grace and fall off the couch a lot, but he’s a sweet cat.

Obviously, this is not where I’d like to be a year from my initial diagnosis. I wish the six months of ABVD had cleared up the cancer. I’d rather not have refractory Hodgkin’s lymphoma, The hardest part of treatment still lies ahead, in these coming months. Yet absolute ridiculousness of covering my head with duct tape and looking like Nosferatu is at least keeping me from taking myself too seriously on what could have been a very sad anniversary.

All My Hair Is Falling Out at Once

After finishing up with chemo in late September, I shaved my head once more to be Walter White for Halloween, and my hair has grown in once more, thick and lustrous. It’s finally to a point where it looks like a haircut on purpose, like a cute pixie cut.

And now it’s time for it to fall out again. I was told I would lose my hair about two weeks after the augmented ICE chemotherapy, and sure enough, it’s time. I just realized I won’t have to pack shampoo for my next hospital stay.

My scalp aches. It’s as if I can feel each follicle letting go of its hair. This happened with the ABVD chemo as well. Although with the lower dose chemo, the hair loss was gradual—until one day I noticed my hair was too thin to keep.

I had wondered if my hair loss would happen all at once with the high-dose chemo, and it pretty much is. If I reach up and tug at the back of my scalp, I can pull out a handful of hair. It’s been perversely tempting to do so, but I don’t need to develop any more nervous habits. (Or maybe I do need a new one to break me of biting my nails.) I’m pretty sure I could just wash my hair away in a few days. But I’m worried I’ll end up looking like Smigel.

So I’ll probably have to shave my head for the third time tomorrow or Monday.

What makes me a little nervous is that when it does come back, some time in April or May, it’s probably going to be a different color or texture. I hope it doesn’t turn white, like Moses after talking to the burning bush. (Actually, I just looked that up and it’s not a Bible fact, but I saw that Charlton Heston movie a lot as a kid.) I guess I’ll just have to wait and see what happens.

I do know I’m going to keep it short once it comes back in. I don’t even have any interest in wearing my long wig. All these years I’ve based my hairstyle on what I thought would look best and be easiest to take care of, and i thought that was long and straight. Now that I’ve found a hairstyle with even less maintenance is available to me, I can’t go back to anything else.

So long, hair, it’s been fun. See you again in the spring!

A Happy Suprise

I got my blood drawn this afternoon and 15 minutes later, my room phone rang. It was the doctor. My blood count reached the magic number of 500 and I would be released! After the general consensus had been a Sunday discharge, this was an unexpected bit of good news.

As nice as Memorial Sloan-Kettering Cancer Center is, I was packed and ready to go in 20 minutes. After this morning’s breakfast Nutella and banana crepes and my jambalaya lunch, I was looking forward to tonight’s stir-fry shrimp, but I’ll be back at the hospital in a week. I also didn’t have time to check out the recreation center again and I was going to avail myself of the free board games tomorrow.

Also, I discovered there’s a pool table. How do you navigate a pool table with an IV in your arm?  I also discovered that there’s an afternoon tea service. If the hospital had a happy hour and I could get a beer to go with my pool game, I might have found it harder to leave.

But I was tired of wheeling around an IV stand and I’d gotten away without peeing in a hat until today. I did figure out how to take a hot shower. I don’t know what it is about dials, but I constantly misinterpret them. I’m terrible at math, don’t know my left from my right and I can’t figure out dials. I think there’s some kind of diagnosis for that, other than being dimwitted. (I repeatedly burned things in the oven our landlord brought up to replace our broken one until I realized I had been misreading the dial. I had been turning things up to 400 or 500 degrees.) So in this unfamiliar shower, I had the dial pointed toward lukewarm instead of hot.

Today I found myself packed and waiting for my IV removal, two days before expected.  I didn’t even have to change my pants, as I was wearing my brand-new dignity pants, suitable for public viewing. I threw on my boots and sweatshirt and was ready to go.

The only hitch was the car service I called to come pick me up. Since my boyfriend was working, I wasn’t being released to anyone and the nurse had to witness me getting into a cab or car. When I called right before 5 pm, the operator said 15 minutes, so the nurse escorted me to downstairs. At 5:18, I called to check. At 5:25 I had to call back after being on hold and forgotten about. “Two minutes,” snapped the person who answered the phone. Seven minutes later, I called to check again and was told the car was outside. After walking through the rain and asking several cars if they were for me, I had to call back because he’s hung up on me. By this time, I couldn’t get through. At 5:38, I called and was told to wait five more minutes.  At 5:41, I called to cancel. At least I gave them the courtesy of an update. The front desk called me a car service that arrived in three minutes.

By this time, I was in tears, upset and having to have someone else waste her time, even though she so kindly waited with me and eventually ended up comforting me.

It’s always the little things that push you over the edge. Or push me over the edge, at least. Being back in the hospital was disappointing, but I had been OK up until the point where I couldn’t leave because of a car service. That was my breaking point. The car service just acted like they were doing me a favor. They had obviously lied about when they would arrive and even being there and then didn’t seem to understand why I was upset that they were almost an hour late. Once I even got into a car, finally, from another service, I couldn’t stop the tears. It wasn’t about the car anymore. The dam had broken and I just let things flow out. Quietly. Maybe a dam isn’t the right analogy. It was more like a slow leak.

I had been so angry, I worried my blood boiled and threw off my counts again.

But all is well, once again. As I type this, a cat is weighing down my right arm with her paw over my hand. I have a week at home, and all is right with the world.

Back at the Hospital

Yesterday, I felt great. I woke up early, got a bunch of stuff done and felt ready to conquer the world, albeit from my bed. I even did yoga for a few days this week. In the afternoon, I felt a little sleepy, so I took a nap. Then I took another nap. By the time I woke up at 6, I had the chills and felt a little achey.

I took my temperature and it was 100, then 101, so I called the doctor. I had hoped he would just tell me to take more of the antibiotics I had on hand, but the doctor wanted me to come in to urgent care with the possibility of being admitted to the hospital since my white blood cell count is low and I’m at high risk for infection. So I packed up my bags and we headed to the hospital, about a week and a half sooner than I wanted to return.

My white blood cell count was 1 on Monday and now it’s hovering around 0, meaning I am neutropenic and have no immune system to speak of. It’s what they had expected after the augmented ICE, and the shot I was given on Friday hasn’t kicked my white blood cell count back up for some reason.

The good news is that they didn’t detect any virus activity, though I’ve been sniffly the past few days. After waiting in Urgent Care, I finally got an X-ray and got to my room around 1:30 am. I tried to keep in mind it’s always better to wait in Urgent Care than being rushed in as an emergency. My boyfriend offered to stay, but sleeping on an uncomfortable pull-out chair among all-night beeping machines is no way to get proper rest. I sent him home.

This morning, I got the verdict: I probably won’t go home until Sunday, or at least until my blood counts are back up. They don’t want to send me home just to have me return. This is a pretty common thing after augmented ICE chemotherapy, so I just have to bide my time until I can return home. Although I’ll be turning around and coming back here next Friday if everything goes as planned for my second round of augmented ICE.

The hospital is full of surprises. When I took a shower, I came back to find my bed made. It was nice, like going to the bathroom at a restaurant and finding your napkin folded upon your return. Later on, the nurse came in with a Lovenox blood thinner shot and I remembered that it stings a little bit, so that was a less fun surprise.

I like this room better — the bathroom is probably one square foot bigger and it makes all the difference. Also, I’m at a slightly different angle than before — the A side of the room versus the B side, so I have a nice view of the Queensboro bridge. But as I told a friend who stopped by earlier, I think I’m on a less fun floor. My last floor when I was here for the ICE had an activity center with movies, crafts and live entertainment. This floor is quieter, and I don’t think they’re as enthused to have me walk around, since I’m at risk for catching everything. That’s OK — I like my quieter bit of real estate.

The good news is that I will have the opportunity to try the Maryland crabcake and the Nutella and banana crepes during my stay. There’s also a make-your-own sandwich option, and I was going to try to get three fillings and four cheeses on one sandwich or see if the kitchen would make a giant Dagwood, but now I can space out my sandwiches.

I’m on a low microbial diet to avoid any potential pathogens, because of my suppressed immune system. It’s pretty much what I’ve been following while eating outside of my home during chemo: No deli meats or cold cuts, no raw fish and no raw fruits and vegetables (except for self-contained bananas and oranges).

I’m also not supposed to have mold-ripened cheeses, and while I haven’t had any raw cheeses for months, I think I’ve been living dangerously and eating Brie, goat and blue cheese. (Oops.) I’m also apparently not supposed to have frozen yogurt, but it’s not the ’90s, so I should be OK. (People keep telling me that frozen yogurt is making a comeback but I don’t believe it.)

For now, I bide my time and hope for an uneventful stay. I still feel a little sniffly. The internet connection here has been a little spotty, and this prevented me from taking an important Zimbio quiz on which ’90s boyfriend I would have. I will do my best to make it to Sunday in such conditions.

My Ideal Winter

Aside from the hospital and the Brooklyn outpost of MSKCC, I’ve spent the last week indoors. I was cautioned I’d feel kind of meh and my white blood cell count is low so I’m quarantining myself from all the germy people out there. From what I see on Facebook, aside from the cancer, I might just be one of the healthiest people around right now, incubated from a nasty stomach virus and a few cold strains. In fact, with my nausea medications, I probably feel better than about 10 percent of my friends right now.

I feel pretty good. Every now and then, something happens to remind me of the ongoing side effects of the ICE — a twinge in my stomach or a weird sinus pressure thing that makes me feel as if I have water in my nose. Also, sometimes my fingers go a little numb. But this is giving me an excuse to live my ideal winter inside. Faced with the prospect of not having to venture out into the cold, I’m like that character from the classic Twilight Zone episode, when the misanthropic man gleefully realizes he has nothing but time to read after the apocalypse. Until that plot twist, of course.

I have no use for winter or cold weather — or even chilly weather. I just can’t think of a warm place I really want to live. I have tentatively ruled out living in some lovely places, like San Francisco and Dublin, Ireland, based on the weather. I don’t know if I could live someplace without a real summer, even if it means skipping winter.

A few years ago, I went on a tour of a luxury Upper West Side apartment high-rise as part of a double press event that also involved a cold-pressed juice/cleanse company. What made me envious as I toured the apartments with sweeping city views and every service imaginable was not the places themselves, or even the wealth you’d have to have to live there. With an on-premises gym, daycare, spa, pool and recreation facilities, I realized that you could stay there all winter and never have to leave. I mean, eventually, you would. But you wouldn’t have to. The luxury of never having to go outside in the cold was what appealed to me. (Also, I’m not sure that if I were that wealthy I’d pay a lot of money to drink fancy cleansing juices instead of eating. I think I would live on a diet of caviar, Cronuts and my servants’ tears.)

I’ve spent lots of time devising ways not to go outside when it’s cold. Since I work at home, I plan entire winter days so that I don’t have to leave. (Now that I don’t leave as much to work out, it’s even easier.) In college, I planned my winter quarter so I wouldn’t have to trudge around OSU’s large campus more than necessary. I scheduled my classes in buildings close together and based on minimal outdoor time.

A friend mentioned something about being an overweight, indoor, bookish only child, and that was me, exactly. You could have described me like a cat.

“What kind of child do you have?”

“Mainly indoor, a little overweight.”

I have developed a real appreciation for — even love of — working out. But it took development. I’m not a sporty person. Now, it’s one of my main hobbies — or at least part of my lifestyle. Unless I can’t because of chemo or energy levels, I still try to move every day. Today and yesterday, I even managed to do some yoga.

But I am, by nature, a sedentary person. I’m still that nerdy 10-year-old who can curl up with a book all day and not move, unless it’s to get some snacks. My idea of being outdoorsy is to go outside with that book and read all day on the porch or under a tree. A few years ago I saw a guy on the train wearing a shirt that said, “I’m outdoorsy in that I like getting drunk on patios.” It stayed with me because 1) he looked a little red-faced from the sun and drinking and 2) I felt it struck a little too close to home for me. I also love to garden, so that gives me a legitimate, productive outdoor hobby, aside from sitting around doing indoor activities outside.

Now that I can relax in my lair with no reason to go outside and face the harsh winter, however, I haven’t gotten as far into the novel I’ve been reading as I thought I would. I’ve been getting some work done. I’ve done things like refile my Word Documents and throw out old makeup.  I’ve even taken up an old hobby — crocheting — and am in the midst of making something that is somewhere between a scarf and a bolo tie.

Perhaps this isn’t my perfect winter. I guess I could do without the chemo and blood tests. I suppose in my ideal scenario, I’d be somewhere warm, sunning myself on the deck of my cabana, making my underlings weep to quench my thirst. (I just realized I could feed those cold-pressed juices to my minions so they could stay hydrated while I make them cry. I really need to win the Powerball so I can put these ideas into practice.) But for now, I get to stay inside with my boyfriend, fuzzy cats and the Internet, so it’s pretty close.

Loungewear: A Hierarchy

It’s 5 pm on a Sunday, and I’m already wearing my pajama pants. This isn’t all that unusual. If I’ve already worked out and made a public appearance, then there’s a chance Sunday evening finds me in leisurewear. It’s the specific type of pants that I’m wearing that’s slightly amiss. Not yoga/workout pants. Not Dignity Pants. But pajama pants.

As someone who works at home, I have a very strict hierarchy of loungewear. I think when you have so little outside structure in your life, it’s important that you have your own rules. Otherwise, who knows what would happen? All of the sudden you’re holding up a liquor store in your sweatpants, certain to be apprehended, when you could have made a getaway in Dignity Pants (to be defined later).

Workout pants are for working out only. If I am lounging in workout clothes, it is because I have either just worked out or am about to work out. No exceptions.

Pajama bottoms are obviously for sleeping, but it gets tricky, because I often wake up and work without getting dressed. Pajama bottoms most often have drawstrings and are flannel or some other soft fabric. Often, they have a whimsical pattern to denote their sleepytime usage, such as sheep, coffee cups or leopard print. I sometimes wear these most of the day but it’s either because I never dressed or decided just to get ready for bed early if there’s only a few-hour gap between working out and bed.

While you can — and should — wear workout clothes in public, otherwise you wouldn’t be able to get to and from your gym or fitness classes, you should never, ever wear pajama pants in public. Unless it’s an emergency or you’re Hugh Hefner.

So this brings me to a third, more nebulous category of loungewear. Earlier this year, before the magazine I worked for folded — or, at least pretended to fold — I wrote something about Sleepy Jones pajamas, designed for the fashionable person who works from home. The press materials tried to evoke Picasso, not the weirdo in stained sweatpants in his basement. And so a social media discussion began among my friends about something one friend has termed Dignity Pants. They’re not quite big-boy or big-girl pants, but you’d feel comfortable wearing them in public. They are named so, because they add a certain sense of dignity to your otherwise slovenly appearance. You can put them on and feel respect for yourself without even brushing your hair.

But why? And how? Another recent Facebook conversation led to a more specific definition of these Dignity Pants. The guidelines are as follows: 1) To remain loungewear, dignity pants must have no zippers. Ties are acceptable, though drawstrings may edge them into the dangerous sweatpants category, in which case, they are not truly worthy of the Dignity Pants moniker. 2) Dignity pants must appear to be some sort of socially acceptable pants. By nature, they are innocuous. No logos, stripes or sporty things — and certainly no letters on the butt, even if they spell out the word DIGNITY itself. They can have pockets. 3) While dignity pants can be possibly used for workouts and sleeping, pajama pants cannot be Dignity Pants. In some instances, however, workout pants can be Dignity Pants if they adhere to the guidelines outlined in 2.

I have two pairs of Dignity Pants. They were, at one time, public pants. Both are from Express and more than 15 years old. They are black and have elastic waistbands. I used to wear them as part of regular outfits. For quite a long time, they appeared in my regular wardrobe rotation, then under skirts and dresses, and finally they were retired to loungewear after years of faithful service. The acrylic blend pair has had a tiny bleach stain for a long time, while the jersey pants pay for my years of being short with having bits of stepped-on hem slowly shred and disintegrate at the bottoms.

Yet I would feel comfortable emerging from my home in these pants, the way I would not while wearing pajamas or sweatpants. (Sweatpants are their own animal and can fall into workout wear, loungewear or sleepwear, depending on how you choose to use them, but alas, they can never become Dignity Pants.) Was it that they were once of the legitimate wardrobe world? Is it their plain texture and fit? Regardless, these are the pants I don to be somewhat respectable. They meet at the intersection of comfort and fashion.

And that brings me to today’s early donning of pajamas. Ordinarily, I would have put on a pair of my beloved Dignity Pants, but my recent hospital stay and full-time life of leisure has put a dent in my loungewear. I’m pulling in old players off the bench, like my Cleveland Indians sweatpants with holes in them. (I actually have retired loungewear that I can’t bring myself to throw away, like my beloved 1989 Depeche Mode Violator tour T-shirt that I bought at Quonset Hut in Akron in 1992.)

And so I find myself in need to new leisure apparel. Tomorrow, when I am getting my blood drawn to see if I need a transfusion, my boyfriend is going to Uniqlo with my shopping list of possibilities to invigorate my tattered loungewear. (While I expect my blood count results to be good, my wardrobe is sadly depleted.) On his list is a sweat set and something called “lounge bottoms,” a type of jersey pajama bottom.

I also splurged and ordered new sweatpants, my first in 10 years. And I may have even found myself some new Dignity Pants —  something Jones New York calls an easy pant.

The new bar I’ve set for my Dignity Pants is: Would I be OK with running into Maggie Gyllenhaal in these pants? It’s not totally out of the question. She lives in Brooklyn; I ran into her at brunch once, when I was fully dressed. As our eyes met, she gave me a serene smile and a look that conveyed, “In a second, you will realize I am famous, but please don’t freak out. We’re just trying to brunch.” That’s why she’s a good actor. She did all that in a second, before my mouth had time to fall open.

The reason that she’s my new gauge is because I was talking to another friend who works at home, someone who understands the need for dignity pants. She recounted being at her local coffee shop, unshowered and wearing some semblance clothing she’d deemed suitable for running across the street. When she grumpily excused herself to get to the sugar, Gyllenhaal turned, apologized and smiled.

Now I’m not saying I’m dressing up for Maggie Gyllenhaal. I’m just saying that you never know when you might run out for a quick errand and you run into a star who looks effortlessly beautiful-yet-approachable, while you just look unapproachable and slightly feral. Things like that might make you feel especially schlubby in comparison. I might be hobnobbing with starlets and I can’t put on decent pants? Would I wear a tattered bathrobe to the Oscars? Crocs to the opera? (I saw Mario Batali do this and it’s not cool, even at a matinee.)

Tomorrow I don real pants, those with zippers, and venture bravely forth. When I return to my lair, I will be closer to having my leisurewear stores replenished, and I can lounge with dignity.

Rushing to a Stop

As always, I am struggling between ambition and laziness. I usually resolve this by sitting all the way back on my pillows and typing with my keyboard on my knees. But since the ABVD and ICE, my circulation hasn’t been as great, so my hands go numb in this position.

All night I tried to resolve the nonstop, self-imposed chaos that I’d subjected myself to before the hospital stay. Work or work out or have fun, but always stay as busy as possible.

What happens when you don’t stop then have to stop all at once? A cliché. Now that my body has come to a screeching halt, my mind spins aimlessly like a top landing on incongruous topics.  One night in the hospital, in a semi-sleep state, the murders from my mystery book haunted me and it fell to me to solve them. What was the connection between all these killings? I fretted, as I tossed and turned. How would I catch the killer?

Not even a seemingly innocuous book about food entrepreneurs provided relief. All that night, I wrestled with questions like: What is the valuable lesson a food entrepreneur can take away from this chapter? What’s the business takeaway here?

And somehow, in my dreams, I also had to figure out my own medications and cure my own disease. Everything was on my shoulders for my busy mind to solve.

I’d wake up, thinking I had the key to my book dilemmas or medication schedule only to be confused. Not even fully realizing that it wasn’t my problem to solve, I’d slip into another restless sleep, rushing to solve another problem.

All last night, I had similar dreams. I’m worried about the “chemo brain” or brain fog that I’ve heard accompanies these treatments. That’s what keeps me from doing more. Sending out misspelled, crazy missives. Or half-formed thoughts, like the ones in my dreams, darting away before I can get hold of them.

Mostly, I feel a little sleepy all the time. Like I could just lie down anytime and take a nap. The good thing is that I can. But it often doesn’t mesh. At times, it feels as if it’s my brain that’s sleepy and my body that feels wide awake, as it should after unlimited sleep. Yet it’s my body that’s actually taking it easy, as my blood counts drop and the chemo hits. My mind races around, trying to finish up last minute chores and assignments.

My digestive system is similarly not in sync with itself, but this is on purpose. From what I understand about these anti-nausea drugs, they work in your brain, not in your stomach. I could be wrong, but according to what I’ve heard, my stomach lining is well aware of the chemo and would be reacting accordingly. But the drugs tell the brain not to worry and in effect, not to be nauseated. (Essentially, that makes my stomach look unfairly like a liar.)

To be safe, I’ve been sticking with mild foods like oatmeal and soup. But another part of me — the unwise part — wants a big bacon cheeseburger. Every now and then, I get a little pang from my stomach, letting me know that, while everything is under control, don’t push my luck.

So I find myself on this hiatus of sorts, where I do what I can and what I’m up for. I can resume being a prolific Facebook poster, for instance.

It’s somewhat of a relief to wake up and not have a looming list of to-dos. I wouldn’t suggest cancer as an excuse for a staycation or a reason to take it easy if you can find another way. But I think that I haven’t taken some time for myself since before I lost my job this summer. Or before I found out about the cancer. I can’t even tell you the last time I truly relaxed without something else nagging me.

As I slip into a cat-like existence of naps and nothing, I still have to learn to let go of everything I felt I should be doing. When I get a good night’s sleep, not peppered by frantic problems, real and imagined, then I’ll be successful.

Augmented ICE: Days 3 and 4

Well, that cat nap inspiration must have worked, because I slept all day yesterday. After a somewhat miserable hour or so the night before, with violent hiccups and nausea, I fell into a deep sleep that would have lasted until about now unless I hadn’t been woken up to eat, for tests and to go home this morning.

It’s an appropriate day return home from my first round of augmented ICE, on a day when the typical misery of a horrible snowy winter day is augmented with icy rain. Since my treatment had started late on Monday, they wanted to keep me through the morning. I got the impression the C part of the regimen — the last medication — is the harshest, so they want to keep an eye on your fluids and nausea. I slept right through everything, so the doctors seemed pleased.

My view yesterday, as a comparison.

My view yesterday, as a comparison.

Yesterday evening, the nurse woke me up around 6 to make sure I slept through the night. I managed to eat my dinner, type a few things and then talk to my boyfriend before drifting off to sleep again. (I am bummed that I slept through eating my breakfast burrito yesterday, but did get to enjoy a dinner of stir-fried vegetables last night. And if you ever find yourself at MSKCC on a day when the wonton soup is a special, order it for the tender shrimp-filled wontons and fresh cabbage and ginger.)

This morning, I woke up before 8 and tried to get as ready as I could. I must have looked impatient as I felt, as I slurped down my breakfast and asked, “Can I go?” Or had my IV tubes unhooked and asked, “Can I go?” I looked like a desperate movie character about to rip out her own IVs and scale down the wall by the time they removed those and said that yes, I could go.

Bedheaded and ready to head home.

Bedheaded and ready to head home.

Now I’m at home with my little NYC family, our two-cat, two-person republic. TMI alert, but I am extremely happy about being able to shower and not having to pee in a hat. I haven’t been this excited to get back to my own bathroom since spending a few months in Mexico using a latrine and taking lukewarm showers. There’s nothing like a hitch in your toiletry schedule to really mess you up.

Years ago, a friend had free tickets to see Urinetown, a musical based on the premise that the residents of the entire town had to pay to pee. Afterwards, my friend, who is prone to body-shaking moments of pure merriment when he thinks something is particularly funny, turned to us. Laughing, red-faced and gasping for air, he asked, “Did we just spend the last few hours watching people singing about not being able to pee?”

Yet, as I regarded my urine hat this week, I found myself thinking about that musical and how I longed for less complicated days.

And on a completely different note of gratitude: Thank you all again for your kind words and notes. If I haven’t answered in the past few days, it’s because I’ve been asleep but I have been cognizant of your thoughts. Being in the hospital can be lonely, but I never felt alone. I would only have to look at my fleece cat blanket — which was a big hit and very warm compared to the thinner hospital blankets — and my cat totem to know that I wasn’t alone. Or I would think of my friend across the Atlantic who shaved her head in solidarity — and looks amazing! Or read some poetry from a friend-of-a-friend in remission from cancer. Or I could read a nice Facebook note or text, even though I couldn’t write much back.

Thank you for helping me remember that even though I have a long road to recovery ahead — one that won’t be pleasant — I’m still one of the luckiest people in the world.

Day Two

The above photo is a triangular contraption that hangs above my hospital bed. I think it looks ominous or like something I would ring to call people in for vittles. A friend who is a nurse says it’s for orthopedics. Another friend, a nurse with a darker sense of humor, jokes that when patients are unruly, it’s lowered down so the patient knocks himself/herself out if trying to cause trouble. And someone else says it’s for a strolling hospital mariachi band.

There’s live music later, but it’s a pianist. There are plenty of recreation activities. Tomorrow, they’re showing The Hobbit, but even with three hours to kill in the hospital, I still don’t think I can see that film again without mentally picking out all the parts that could be cut. On Friday, there are pastry chefs and Gone with the Wind — a movie that is plagued with adult issues but that I’ve never watched all the way through after boycotting it as a kid because of an animal death —  but I’ll be home by then.

My boyfriend noticed that there’s a hat decorating workshop on Sunday. “Do you think it will be those hats you’ve been peeing in?” he asked. I think and hope they’re regular hats, though a urine-hat decorating workshop would save me a second or two of label-reading.

As I mentioned — and this is probably TMI — I have to pee in something called a urine hat. Then I have to call the nurses to tell them about it. I haven’t found the right wording. “Hey, I peed in my hat,” sounds too informal. Sometimes I avoid calling altogether, if I can help it.

People seem concerned I might get bored. But aside from the peeing in a hat thing and the IVs,  this is pretty much a normal day for me, sitting around in my pajamas with my computer.

I’m exhausted, though. I got only three or so hours of sleep. But actually being able to sleep whenever I want to doesn’t make it more appealing. I may take a post-lunch, post-lfosfamide nap.

My first dose of ifosfamide was last night. I was supposed to alert the doctors and nurses of any chest pains. Instead of pain, I had a mysterious chest fluttering. I struggled to find the right words to describe it. Either way, it didn’t hurt or sound too alarming. After thinking about it, here are some things it felt like:

  • A tiny upper chest earthquake.
  • Like someone had released a few miniscule scampering squirrels into my chest.
  • Somewhere between being nervous and being in love. Butterflies in the chest? The nurse asked last night if it was like a panic attack, and as a former panic disorder sufferer, I can say that it’s not the same feeling at all. A panic attack is somewhere between feeling as if you’re dying and losing your mind at the same time.
  • Like a tiny person farted inside your chest.

The rumbling eventually stopped. I managed to get a few hours of sleep, but then my roommate’s beeping machine went off. Then I couldn’t sleep and the second I would drift off to sleep, my own beeping machine would go off or I’d be checked on for a test or an IV.

Maybe I can’t sleep without the inspiration I see every day of my napping cats soaking up the afternoon sun. I’m going to curl up with my cat blanket — a big hit with everyone so far — and picture the sleeping cats. I’ll see if that works.

UPDATE: Apparently, the activity center is hopping here tonight, but I feel as if I don’t want to go by myself. Who else would I go with? And I’m wearing my glasses, which still plagues me, even though I’m 36 and have a bunch of other stuff going on, like IVs in each arm. (Has Bob Costas and his pinkeye made wearing glasses when your public persona is a contacts-wearer acceptable? Also, I am so susceptible to pinkeye that after I saw the opening ceremony and his eye, my left eye swelled and turned red.)

I have to be more proactive about showering here, but I’m grossed out by showering with my IV in. And I don’t know where my robe is. I don’t think I ever got one. I once thought cancer could make me brave enough to take on anything, but apparently I suffer from the same social anxieties and lack of hygiene/wardrobe organization as always.

Day One

Today is the first day for me in the hospital, the first day of three days of augmented ICE, which seems likely to turn into four days. My admission was booked for 1 pm, and I got to my room around 5:30.

So far, aside from not being able to bend my arm because of the IV, it hasn’t been too bad, but that’s because the chemo hasn’t started yet. It’s supposed to arrive shortly. But here are the highlights:

1. I’m a little bummed about the predicted nausea, because this menu looks pretty good with a selection that includes short ribs, vegetable stir-fry and Asian dumplings. There’s a breakfast burrito special on Wednesday, and I am already looking forward to it.

Tonight I ordered the mozzarella sticks, one of my very favorite things to eat. There were only three through. I’m kind of concerned about how much hospital food costs. Is it like a hotel minibar? Otherwise, I’d be eating some spring rolls and pizza right about now.

2. For the next 10 hours or so, I have to pee in something called a “hat,” a habit I hope to break myself of before returning home so things don’t get awkward.

3. I have to take this IV stand with me everywhere for the next few days, including the shower.

4. I miss my boyfriend and my cats.

5. My bed puffs up and sighs every now and then, so it’s like being on the chest of a sleeping giant.