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.

10 Tattoos

If you would have told me that, at 36 years old, I would drink a few cups of red stuff that promised to be radioactive and then get nine tattoos, I would have been surprised. That seems like something that should have happened in college, when I regularly consumed drinks with names like Windex, the Bettie Page and Mind Eraser. I was 20 when I got my first — and only, until yesterday — tattoo, a small Libra sign on my shoulder.

The whole experience of my PET/CT scan and radiation prep was a little like being in my early 20s. At one point, people drew on me with markers, like I was the first guy to pass out at the party. I also spent some time lying in a bag full of chemicals with a piece of masking tape holding my chin up, as if I were some sort of performance artist. (This also seems like something I could have done for an artist friend — I can see someone asking me to lay in a bag of chemicals to make a mold and agreeing.)

What’s even more surprising is that I had forgotten a lot of this was supposed to happen yesterday. It was all explained to me a few weeks ago, and then I promptly forgot about the tattooing and molding part of my radiation oncology appointment.

When I arrived, I changed into a navy hospital robe, which I later discovered was the less chic of the two versions available. While others seemed to have sleeker gowns with white piping, mine was a plainer, droopier version. I’d noticed the other robe in the pile in the dressing room, but had thought it wouldn’t make much difference. Perhaps I am placing too much blame on my robe. I’m not very good at tying the back, and I have a knack for looking slightly disheveled, even when I’m wearing clothes with buttons and zippers.

Sitting around in robes with a bunch of other people with shaved heads and cropped hair makes me feel as if I’m a monk.  Or maybe in a cult. Wait in these outfits we’ve provided so we can make a mold of your upper body, then we’ll give you a red drink and tattoo a symmetric pattern on your body.

The initial explanation of the mold sounded like I was going to be vacuum-sealed, but I laid on top of a bag of warm chemicals for about 15 minutes until it hardened to make a mold for future radiology appointments. They put a piece of masking tape across my chin and attached either side to my arms, which were above my head. All those savasanas at the end of Bikram yoga class came in handy as I had to lie still.

My veins remain tiny and uncooperative, but the nurses found one for the IV. Then it was finally time to drink the red fluid. “Raspberry,” the nurse noted. Again, I asked if there were other flavors, but no, that’s it. After not eating for more than six hours, I find myself looking forward to my raspberry radioactive beverage.

Then it was time for the CT and PET scans. Since the contrast injection sometimes burns, they slowed it down a bit for me. (Last time, it caught me off guard when it hurt.) They checked on my comfort, but since my chin was again taped and strapped up, I could mostly just grunt that I was OK. The worst part of the scan, for me, isn’t even staying still for so long; but it’s hard not to fall asleep. When I do start to nod off, my arms move then I wake up, alarmed. So I’m usually left a little drowsy.

I was nervous about the tattoos. I should mention that I passed out when I got my first tattoo, the little Libra symbol. The tattoo artist had told me to let him know if I felt nauseated or light-headed. “I feel funny,” I announced, and then the next thing I saw was the bottom of a bucket, which my head was in. I emerged from the bucket to see the friend who had accompanied me, red-faced and laughing with unbridled mirth. The tattoo guy said that people pass out from an adrenaline rush and he’s had 300-pound linebackers pass out on him. It’s possible that he was lying to make me feel better, but he didn’t seem like the type.

Still, I hadn’t had the desire to get more tattoos. I just couldn’t think of anything else to get, or where to get it. Even when I dressed at my most outrageous, there’s a sense of conservatism that pervades my wardrobe. Ever the goodie-goodie, even when I’m trying to be cool. So when it came time to get a tattoo, I wanted something that could easily be hidden. I was mindful that I’d need to get a job someday. Now, of course, tattoos are more acceptable, but even then, I wanted to be rebellious in the most cautious way possible.

“How many?” I asked yesterday, as they took measurements and drew on me with markers.

“Nine,” was the reply. Nine?

“Is this going to hurt very much?” I asked. It was the same question I posed years earlier to the man wearing a leather vest with sleeves of tattoos (before I passed out). That guy had assured me that if it hurt too much, people wouldn’t go back for more tattoos.

I was assured it would hurt less than the tattoo I got 16 years ago and even less than a finger stick. I expected some sort of fancy tattoo gun, but it looked more like an ink pen. “Like a prison tattoo?” my boyfriend asked later.

I guess. I’ve never been to prison. I imagine this was much more sanitary. But it didn’t hurt much, to my relief. I got three down the middle of my body, two on each side and two on my legs. They explained that they don’t want to make them too big, as they’re permanent, but they also have to be able see them during your radiology appointments. They’re small dots, like the one Tom Hanks got in an episode of Bosom Buddies to impress Sonny when he got drunk with Amy. (Perhaps my fear of tattoo pain stems from watching this episode that apparently left quite an impression on me as a child.)

The next step is to wait for the doctor to call with the results. I have a confession: I can view the results now online, but I’m going to wait for the doctor to call. I may have 10 tattoos, but I’m not tough enough to read the lab results on my own.