Dispatch from the Infusion Room

It is Tuesday, April 15, and I am stressing, not because it is chemo day (it is), or because of the tax deadline (got that wrapped up right on schedule early this morning), but because I’ve been obsessing for two days now that I don’t have anything interesting to write about this week. Half a dozen blog posts and I’m plumb out of ideas. And then it hits me: Of all the creepy aspects of this whole surreal cancer thing, the creepiest just may be that the creepy stuff is all starting to feel normal.

Doesn’t everybody go to chemo on Tuesdays?

It has been three months since I discovered my gills a.k.a. the lump in my neck. The Three Month Rule is a handy predictor in life. The first time you feel disillusioned in a great new job, check your calendar. It’s been three months since you started. When you’re seeing somebody new who is so infatuated with you he starts naming your kids after the third date, it will take your wary, conservative self three months to give in to this intensity and decide he’s probably not a stalker and it’s okay to like him back. Which, in a paradigm of mathematics (or maybe it’s metaphysics), is exactly when he will stop calling. Now, after three months, cancer is dull. Powerful tenet, the Three Month Rule.

There is, however, a self-imposed deadline looming. Fortunately, I have been taking notes on all this, even the parts I now think are boring. (Cancer? Been there, done that!) Maybe I’m not the best judge of normal these days.

I am writing this from the infusion room, typing away on my laptop, my cadence off due to the compensation for the IV and the occasional stop to pluck an annoying hair off the keyboard. (No big deal.) The infusion room (See? The infusion room. Ho-hum. As if just the words didn’t make me nauseous in February. But that was only a month in.) at Dr. R’s office looks like your standard-issue waiting room except there are recliners mixed in with the standard-issue waiting room chairs. The recliners come in two colors, hospital almond (the four new ones, assembled since my last visit) and hospital green (the two old ones). Each recliner has a pull-up plastic table on the side, and is situated next to an IV pole with an infusion pump (not to be confused with Manolo Blahnik pumps, you’d have to bring them yourself, or ask Dr. Lisa to be your Chemo Date) attached.

Two prints depicting billowy curtains framing windows opening out onto water scenes adorn the north and south walls. The real windows on the west side of the infusion room overlook the Philadelphia city skyline but the blinds obscure most of the view today. The room is uninspired, but not nearly as depressing as the hospital’s assembly-line infusion room (one factor in deciding against the doctor based there, another being the snarly woman at the front desk).

Four weeks ago (two months in) I was the new kid on the block. Accompanied by my mother for my first day of chemotherapy, I was such a nervous wreck I don’t think I rolled my eyes at her all day. Not even once.

Now (Three Month Rule in effect), I plop into a recliner (scheduling my treatments early so I can get a good chair, which is of utmost importance, and not guaranteed. “Get a good chair!” my mother texted me this morning. “Did you get a good chair? That’s all I thought about ALL DAY!” my island friend Celia will say when she calls me later tonight) and switch into airplane mode, nodding a quick hello to the travelers around me while quickly popping in my earphones to thwart any attempts at engagement. I don’t mean to be rude but I don’t want to talk to these people. I am not one of these people. Besides, I am worried that a few of them might have overheard Dr. Genius shouting two weeks ago how my cancer is CURABLE which made me a little self-conscious around all these, you know, cancer patients. I don’t know anything about them, but I presume most of them have the NOT CURABLE kind of cancer, and I’m afraid maybe they won’t like me because even though I’m new to all this, I’m already the A-student of cancer treatment.

Here are my classmates:

On the left is an elderly Asian man. He is always here when I arrive, always in the same corner chair, lying back with a camouflage cap, eyes closed and shoes off. He appears to sleep through treatment. The same two women, perhaps his wife and daughter, are always there as well, sitting nearby, never speaking or reading, just keeping silent vigil.

Sitting directly across from me is a well-dressed black woman, about my age, looking like she’s squeezing treatment in on her lunch break from some high-profile job. Her chemo date is an older woman, about my mother’s age.

Next to her sits an attractive, white grandmother decked out in pink pants, pink flowered blouse, a pink turban and lots of gold jewelry. Are her eyebrows drawn on? I can’t tell. She is knitting, her nimble fingers unhampered by the IV in her right hand. Her husband and granddaughter, who appears to be about 8 (Why is this child here? Why isn’t she in school?), are sprawled in the chairs on the adjacent wall. Neither looks up from their personal electronic devices.

Then there’s me. I’m wearing sweatpants, my MOST WANTED crew T-shirt from the Caribbean, a zip-up Guinness jacket (souvenir from my only visit to Ireland, spent entirely in the Dublin airport) and my high-top Converse All-Stars (brown with pink and white flowers). We could be a photo for a National Cancer Institute “Cancer affects everyone” public service announcement.

The commonality that everyone in this little room is either sitting there hooked up to an IV, or sitting there staring at someone hooked up to an IV, seems normal to me today, but something in my brain insists that I fact check:

“Weird, huh?” I hiss in the general direction of my chemo date.

Chemo Date is self-possessed.

“Don’t you think it’s creepy?” I persist.

“I think it’s life-saving,” says Chemo Date.

Chemo Date is right, of course, but this is my disconnect. Because I am not thinking about dying (not from this, that is), I am thinking of this not as a life-saving miracle but as a colossal inconvenience and one that is getting fairly (yawn) routine at that. A routine that goes something like this:

9:00 a.m.   Appointment. (Alas, I am not here on time today because I am at the post office at 9 a.m. [See reference to making the tax deadline, paragraph 1.] Who could blame me for not wanting to be on time for chemo?

9:13 a.m.   Walk down Chestnut Street. Wonder who buys the cheap (but well-accessorized) satin Naughty Nurse, French Maid and Lady Cop outfits in the display window of the shop next door to Dr. R’s building.

9:14 a.m.   Wonder how many people take an elevator to the 13th floor to visit their oncologists.

9:15 a.m.   Sign in.

9:15:05 a.m.   Wait.

The waiting room is mobbed. I’ve got two bags full of stuff to do, but know as soon as I pull something out, they will call my name and everything in my lap will end up on the floor so instead I look around and try to guess who’s got the cancer, and who’s just freaking out about the cancer. That skinny lady? Hard to tell. The skinny lady with thinning hair? Definitely. What about that healthy looking Irish guy? How about the sulking teenager?

9:40 a.m.   Vitals. Blood pressure: 110 over 60. Weight: 126. Complete Blood Count (CBC): Counts Excellent.

9:45 a.m.   Wait.

10:10 a.m.   Move into examination room.

10:10:05 a.m.   Wait. The examination rooms look north. I can see the approach to the Ben Franklin Bridge. I can’t see the water, but I know the river is just beyond. I daydream about sailing for a few minutes, then dig out the iPod. I always listen to Christina Aguilera’s “Soar” in this room. Dr. R usually comes in about two minutes into the song.

10:20 a.m.   Enter Dr. R. Begin witty banter.

“You never write. You never call.”

Dr. R chuckles. It is not a successful appointment if I don’t make Dr. R laugh.

Dr. R, just back from vacation, is delighted with my progress. My gills are disappearing. I feel strong and healthy. He seems impressed that I haven’t needed to take the anti-nausea pills. My Barry Bonds bone marrow has pumped my white blood cell count to super-normal levels.

Dr. Genius had seemed anxious to put me on the $3500 Super Shot as part of my regular routine, but Dr. R wants to take the wait-and-see approach. He thinks less drugs are better. This is one of the reasons I picked him, along with his concurrence that we would try to do the entire treatment without a surgically implanted port to deliver the chemo. (As an aside, I have to mention that last time around, in between gushing about how fabulous Dr. Genius is, his nurse lamented that I didn’t have a port. I’m sure she didn’t intentionally miss my vein on the first try—“That never happens!” she informed me—but I’m keeping an eye on both of them. You gotta watch these guys.)

We look at my scans, something I hadn’t been able to concentrate on before (not three months yet). Dr. R calls up the PET scan images and there, on the screen, is Lois Lane, as seen by Superman. The hour I spent last February in that crazy machine with better-than-X-Ray vision has produced an amazing outline of my body, bones, and vital organs. Parts of me are glowing.

“Here are your ribs,” explains Dr. R, “and here are your lungs, and heart,” he says, pointing to two of the glowing areas.

I comprehend about 18% of the glow explanation, something about the radioactive dye used in the PET scan, and sugars, and how the two main things that suck up sugar are the vital organs and fast-growing cancer cells.

Above and below the heart and lungs are two areas of ultra-glow.

“Down here is your bladder,” says Dr. R. “It’s glowing intensely because that’s where the dye is exiting the body.” I shudder as I remember the two, “fruit”-flavored, radioactive “shakes” I had to down before that test.

All the rest of the ultra-glow is in my neck and chest. You don’t have to be a brain surgeon to correlate the glow on the picture of my neck with the lump that I can touch. It is the navigational star, marking the starting point of this little cancer chart. A little bit to the south is a big cluster of bright objects. The Pleiades, I think. The whole top of my chest is lit up like a winter sky on a moonless night. It reminds me of ET, with that big glowing heart shining through his extra-terrestrial body. But now that I can so clearly see my own heart, down there to the right, and not quite so bright, I realize the location of ET’s alleged “heart” light is, relative to human anatomy, right where his lymph nodes should be! Maybe ET had Hodgkin’s! (I keep this thought to myself.)

After one more treatment—which completes two cycles of chemo—we’ll do the PET scan again and see how much is still glowing.

10:40 a.m.   Prep for treatment. (Tylenol and Benadryl pills to combat flu-like symptoms; intravenous anti-nausea medication.)

11:00 a.m.   Start ABVD chemotherapy. First the V—Vinblastine. The oncology nurse injects this directly into the vein. Then the A, Adriamycin, also injected, the orange one that turns your pee fluorescent colors and makes your hair fall out. “A” for aesthetic. A few saline flushes, then the B. The Bleomycin will drip for awhile.

Everybody’s chemo is different. Different drugs, different cocktails, different schedules, different prognoses. The drugs are serious. They make you sign a two-page waiver before they’ll give them to you. My chemo takes four hours, and is a proven cure for Hodgkin’s. Since I’ve been feeling good, I think maybe I misunderstood the intensity level of my treatment, but the oncology nurse says on a scale of 1 to 10, I’m an 8-and-a-half, which makes me feel tough.

Noon:   Lunch.

After two treatments, I figured out I was not going to get sick, at least not during or right after chemo, and in fact, I was finding I was fairly hungry, especially since all the waiting was pushing treatment into the afternoon. Still, I didn’t want to bring much besides saltines or animal crackers for fear that smells, or even the sight of someone chowing down on a tuna fish sandwich, might offend another patient. Wrong. Not with this crew, anyway. High noon and the infusion room morphed into Greyhound’s Saturday NYC Express, where the passengers, without fail, unzip their backpacks and pull out the most pungent of snacks the minute the bus hits the New Jersey Turnpike. It is borderline disgusting. The nurses are pumping us full of anti-nausea drugs and these people are eating hoagies.

12:45 p.m.    Now the Dacarbazine. The D hurts going in, so the nurse will dilute it. This hurts less, but makes me need the bathroom every 8 seconds, a bit of a project with two IV’s in tow. This is the long drip.

After two hours of typing, I am usually ready to switch to reading for awhile.

There is a small, low bookshelf in the infusion room with a paucity of worthwhile reading material, the contents consisting of a few abandoned paperbacks and a pathetic assortment of magazines. (My childhood friend Cynthia has another friend blogging about her cancer experience. She recently posted about the abysmal state of literary offerings in doctors’ waiting rooms, vowing to make replacing back issues of Prevention and pamphlets on hospice care with trendy, more upbeat fare her post-treatment charity mission.) “Horrendous,” is what everybody says the first time they come here and peruse the shelves, which is what I said, too, during the first 2 months and 29 days, but now I am unfazed, and besides, I bring my own books.

Today I have Chemotherapy and Radiation Therapy for Dummies but I am suddenly shy about opening it. Last time I had Crazy Sexy Cancer Tips, by a young and hip filmmaker with a rare, incurable cancer and a big emphasis on nutrition, meditation, and fun (and a forward by Sheryl Crow). The time before that it was Cancer Vixen, drawn and written by a New Yorker cartoonist with a sardonic take on her battle with breast cancer. By comparison, Dummies is pretty mainstream, but the infusion room is crowded today, and I am concerned that the cancer patients might think I’m insensitive, or stupid. This sounds ridiculous, I know, but I am a little gun-shy after the recent incident.

It happened two weeks ago at the Look Good, Feel Better makeup program I went to with Celia. The volunteer cosmetologist was explaining the importance of moisturizing “during this time.” I raised my hand and asked what kind of effects the chemo was likely to have on my skin.

“Okay,” responded the volunteer in a tone of voice usually reserved for third graders, “we don’t like to talk about chemo or radiation, but I would say that during this time, you can expect your skin to dry out significantly.”

Was she kidding? She was talking to a conference table full of women with no hair. Did she think they don’t know they’re going through chemo? The nice lady next to me had just come from treatment and announced that she was worn out as she collapsed into her chair. I’m reasonably sure she knows the treatment that’s making her so tired is called chemo but maybe there’s some cancer etiquette I need to learn, stat. I can talk about my experience of defecating in a bucket for a month for as long as anyone wants to listen so maybe I’ve lost all touch with social mores.

Since I am on shaky ground, I leave the book in my bag (the gray one, with tiny, pink skull and crossbones printed all over it). Best not to upset anyone who might not know they’re getting chemo. I focus instead on the assistant nurse who is filling in today. I think I hear her complain about having a cold. This seems rather unfortunate in a roomful of people with compromised immune systems but, as is clear from the above story, what do I know? Common cold germs are probably no match for the unlimited supply of toxic chemo drugs in this room. My money’s on the poison.

1:30 p.m.   About an hour to go.

The elderly man in the corner is finished. The women with him are still straightening up the chairs and collecting belongings, but the man has his shoes on and is headed for the exit. People bolt out of here like you wouldn’t believe once they are sprung. As he approaches my chair, he slows down, turns slightly, and gives a little bow. I smile. He leaves, free from the infusion room, at least for the rest of today.

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