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 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.

All or Nothing

I realized when the nurse practitioner told me I needed to do the ICE high-dose chemotherapy before moving on to the stem cell transplant that it was what I’d been expecting. My PET scan looked better, but it’s not 100 percent clear. The stubborn lymphoma spots in my chest and belly have decreased in size, and they don’t show up as brightly on the scan. So that’s good. But I still have to do the ICE. Close, but no cigar, Brentuximab.

Part of the reason that the doctors were doing this trial was to find a less toxic alternative to ICE. And ICE doesn’t sound pleasant. I allowed myself one blog read of someone who has gone through it, just to prepare myself without scaring myself.

On Monday, I pack up for three days and go to the hospital for round one of augmented ICE. Then I’m home for 21 days, while going in for blood tests and such, before going back for three more days of ICE. Then it’s on to the stem cell collection, then 10 days of radiation and the 21-day stay in the hospital for the transplant.

Everything’s going to change as of Monday, even if most of it is temporary. (After the stem cell transplant, I should be back to normal in about six months with a few long-term side effects.)

I feel as if I shouldn’t be writing this. Lately, no matter what I’m doing, I feel as if I should be doing something else. I have a limited time to do everything, a looming deadline that I can’t push back. I have work I need to finish, so I feel as if I need to get as much done as possible before I go into the hospital.

I won’t be able to work out for months. I’ve finally started doing yoga at home and a 20-minute Jillian Michaels workout. (I’m up to level two on the 30-Day Shred!) After six months of working out sporadically and about two months of barely working out at all, I’m finally getting stronger. I’ve even returned to a few kickboxing and TRX classes here and there.

But, of course, I’m going to have to take a long break again. So I also feel as if I should be working out more. Sometimes, I’ll sneak in some yoga, but I’ve usually been doing just the 20 minutes—and even that’s been hard to work in. Where does my time go?

I also feel as if I should be out having fun, though all this snow and cold makes me want to stay in and hibernate. And when I am out, what constitutes enough fun when the next few months are going to be no fun at all? There isn’t enough fun to be had. Am I failing at fun?

I picture this elusive fun as something like Mötley Crüe’s “Girls, Girls, Girls” video (though I’m not particularly comfortable with strippers or motorcycles) and Bananarama’s “Cruel Summer” (filmed not far from where I live, in much warmer weather, years ago). I should be carelessly frolicking or maybe doing something debauched right now. Instead I am inside, blogging, after working all day and doing my 20-minute workout.

There’s a perverse part of me that wants to see what I can get away with before my hospital stays. Sometimes, it’s all-or-nothing with me. When the radiology oncologist told me that I’d have to eat heart-healthy for the rest of my life, I wondered, “Should I just eat a bunch of double bacon cheeseburgers until then?”

I should be dining like a medieval king, eating giant turkey legs, swilling mead and making jesters entertain me. Tonight, I have veggie chili, tea and the cats—oh, and Homeland, which I’m catching up on. I should be living like Marie Antoinette in that Sofia Coppola movie, before the beheading. Mile End deli is having a poutine week, so I might indulge in that at some point.

I feel all this pressure to work, workout and have fun before the unknown fatigue and nausea of the next few months. Aside from that, another main factor, according to the doctors and nurses, is boredom. Apparently, I’m better than I thought at hiding my lazy streak. Everyone seems to be underestimating how good I can be at doing nothing.

I’m glad that all the hard work I’ve put into appearing hard-working is working. People assume that doing nothing will bother me. I know that, since I say I’m stressed out about having fun, it doesn’t seem like I’m capable of relaxing, but that really is my natural state.

I achieve a delicate balance of hard work and utter laziness. A few weeks ago, I worked from 9 am to midnight, with the exception of a radiology appointment. (Even at the appointment, before seeing the doctor, I had my laptop out, working on a last-minute assignment.) And I did my quick 20-minute DVD, which is essentially working out really hard so you don’t have to work out as long. Later that evening, my idea of good planning was wearing a navy T-shirt because we were having pasta, and I thought there was a good chance I’d drop some on myself. So on one hand, I got a lot done, but on the other, I’m too lazy to properly feed myself.

Last week I achieved my main sloth goal, which was to not leave the apartment during the deep freeze. I also managed to see some friends who I haven’t seen during my hibernation. One of them lives just a few blocks from me and when I finally emerged from near hermitage to go to chemo on Friday, she lured me over with cookies.

That’s about as crazy as it gets around here, before my months of being somewhat of a shut-in begins. I’ll be enjoying time with my boyfriend, friends and cats (sadly banned from hospital visits) before my time of rest and recovery. However, two friends gave me a cat totem to take with me in lieu of my cats, and my boyfriend’s mom made me a blanket with a cat pattern, so I can be properly identified as a cat lady in the hospital.

This week, however, you will probably not see me cruise by on a motorcycle or dancing on rooftops or throwing bananas at cops—at least not if this snow prediction is accurate.  I’ll have to save that for after the transplant.