Corner Turned

I’ve heard from doctors and several people who have been through autologous stem cell transplants that once your cells engraft, you immediately start to feel better, as if someone’s flipped a switch.

At 5 am yesterday morning, I woke up and knew I was on my way to getting better. Granted, I woke up in pain. I want to tell someone, but my boyfriend is squeamish. So, if you get the heebie-jeebies, skip the next two paragraphs.

I woke up because my throat was burning. I coughed up the usual assortment of whatevers (stop me if I’m getting too technical), as well as something new and white. The next time I saw the nurse, I asked him about it. “Did you save it for me?” he asked.

Of course I had. After he examined it, he asked me if my throat hurt, and when I replied that it did, he simply said, “It’s just the lining of your esophagus.” That’s kind of what I was worried about, but he’d been so calm about this fact, that I decided I shouldn’t be concerned. This whole time, everyone’s been describing the radiation as causing an internal sunburn, so it makes sense that the healing process involves the old, burned lining to slough off and then come back fresh.

My stomach has been making odd noises throughout this whole experience, especially during this week of not eating. One day it sounded like a grumpy tiki god or a mummy rising from the dead—a low rumble of discontent. But yesterday it started a new strategy and sounded just like a mewling, starving kitten. OK, I get it. We’ll try to have some tea today. But I can’t promise any solids.

Yesterday’s nurse just came in to adjust my beeping machine and he asked about my throat. I feel so much better. He said he could tell just because I seemed more comfortable. The throat/not swallowing has been the worst side effect for me—not bad, in the grand scheme of things. The side effects they can’t eliminate, they try to control the best they can. It’s taken a lot of morphine, magic mouthwash, Biotene and acid reflux medication to get me through this mucositis and burning from the radiation.

So far today, I’ve managed two sips of water. And I took the three sips of Carafate without getting nauseated. It was hard for me to take the drug to stop my upset stomach because I couldn’t swallow even the little drops of pink liquid. So my throat and stomach reached an impasse. Even now, as I celebrate my earlier victory of Carafate, a new one has appeared to taunt me. I could get down only one sip this time. Little victories and losses.

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.

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.