From Tape-Downs to Lockdowns: A Day in the So-Called Life of a Cancer Patient

Editor’s note: This is the latest in a series by Jo Ann C. Nahirny, a veteran English teacher at Matanzas High School and FlaglerLive’s Teacher’s Trenches columnist, who’s chronicling her journey through cancer treatment in Gainesville. You can read the column where she revealed her cancer’s recurrence here, and her first exposure to the regimen ahead here.

By Jo Ann Nahirny

Three down, 39 to go, I muse, as Pam and Stephanie, two radiation therapists at the Davis Cancer Center at Shands UF, help me off the table after my third cancer treatment this week.  I’m not even 10% of the way there yet, I silently lament. I’ve just spent the last uncomfortable 20 minutes lying perfectly still, partially unclothed, and literally masking-taped down to a hard mold of my body, as an Elekta Synergy linear accelerator targeted the lower left portion of my abdomen with narrow beams of radiation.

I dress quickly and walk with my husband back to the American Cancer Society’s Winn Dixie Hope Lodge on 16^th Street, a mile away.  I settle down for a nap, knowing that in just six short hours, I’ll see Pam and Stephanie again, and we’ll do the same damn thing all over again. And again tomorrow. And for many more days to come. I try to banish all thoughts of what I still face, to avoid an emotional meltdown.  Stay strong. The encouraging words of family, friends, coworkers and my students back at Matanzas High School echo in my mind as I blink back tears, striving to sleep, rather than weep.

I rest fitfully, tossing and turning in Room 27 at Hope Lodge, where Mike and I will spend the next four to six weeks, while I’m undergoing these twice daily treatments. A bronze plaque on the door informs us that the room in which we’re staying has been paid for through the generosity of the H. Wayne Huizenga Family of Ft. Lauderdale. (Huizenga, a well-known philanthropist, is the entrepreneur who grew Blockbuster, Waste Management and Auto Nation into successful companies, and formerly owned the Miami Dolphins and Marlins.)

I haven’t even been in Gainesville for 72 hours yet, and I’ve already figured out which facets of life here will be tolerable –and which may drive me to despair.

First, it’s the myriad rules, not the least of which is that we must be in the Hope Lodge for the night by 9 p.m. sharp –or we’ll be locked out. That means no going out for dinner and a movie, or an evening at the Oaks Mall, or for a late night cup of coffee or burger at Denny’s. The center’s director, Nancy Dohn, provides tours and orientations to newcomers, and stresses that for the security of all guests, the night manager activates the Lodge’s alarm promptly at 9. Inside, we’re free to do as we please; we just can’t leave.  This realization leaves me feeling a tad claustrophobic, given that Mike and I are used to living in our 3,000 square foot house, and now we’re in a room measuring about 250 square feet.

The Hope Lodge itself, however, is bright, modern and cheery –despite the fact that the only other people we ever get to see are all also cancer patients, many of them in far more dire straits than I, as evidenced by the paucity of hair and the all-too-frequent glimpses of chemo ports (Port-a-Caths) jutting out from beneath the shirts of so many.

To help pass the time, Mike and I have brought books, magazines, a laptop, and a TV and DVD player, since neither cable nor television is available in any of the 47 guest rooms, although there are a few TV sets in small sitting areas. We’ve also come equipped with groceries, since residents at the Lodge mostly prepare their own meals, make their own beds, clean their own rooms and bathrooms, do their own laundry and more. It’s much like college dorm living  –minus the drinking, since yet another rule stipulates alcoholic beverages aren’t allowed . So much for that occasional relaxing glass of Moscato Rosato with dinner.

Hope Lodge offers patients (and their caregivers) no-cost accommodations for the duration of cancer treatments, as well as  free use of about a half dozen glistening, communal kitchens, well- equipped with refrigerators, stoves, microwaves, toasters, small appliances and much more, all made possible by donations from Whirlpool. Gainesville groups also generously support Hope Lodge and its temporary guests, as evidenced by the frequent appearance of food on the “sharing counter.” Although Mike and I brought microwave entrees, cold cuts and canned goods with us, we haven’t used them much, since every few days, local organizations and restaurants show up with food donations.  Once when we came back to the Lodge to make lunch after my treatment, we discovered an abundant supply of biscuits and rolls from Panera Bread, as well as au gratin potatoes and beef stroganoff brought in by another local group, all free for the taking.

Yet as much I try, I cannot enjoy these delectable treats as I normally would. Changes in my appetite and all-too-frequent bouts with, how can I say this inoffensively, “gastrointestinal distress” are the side effects I’ve started to experience. Mike feels bad eating in front of me, despite my repeated assurances that it doesn’t bother me. I’ve dropped a few pounds already between my lack of desire to eat, and the four miles I walk daily going back and forth to Shands’ Department of Radiation Oncology twice per day.

The radiation treatments themselves are virtually painless. Before I got here, though, I worried it would burn or sting. But nothing hurts while it’s happening; it’s hours later that I feel like crap. Still, it’s not as awful as I’d feared. At least not yet.

Mary, Stephanie and Pam, the radiation therapists, typically work with me every morning (sometimes as early as 7 a.m) and again every afternoon. They’re highly skilled, professional and competent. They operate extremely sophisticated, high-tech equipment that looks like it’s right out of the International Space Station. Yet despite the level of specialization their careers require, they all possess outstanding interpersonal skills, and a high degree of sensitivity, which helps me better endure the arduous treatments. They never do anything to me without alerting me first to what’s going to happen, and they patiently and thoroughly answer any questions I pose.

“You’re going to feel like we’re manhandling you at times,” Stephanie explains apologetically, as she sketches blue, green and black marker lines on my skin from below my belly button, across my left hip,  to my lower back.   “But we’re not. We have to manipulate your body so we line you up with our marks.  We’ve got to position you very, very precisely. While the machine’s on, we can’t be in here with you. So we monitor you by video from the other room. It’s going to feel pretty confining, with the machine rotating around you, especially after we tape you down. But don’t worry. We’re watching you through it all.”

Tape me down? Was she joking? I found out soon enough, she wasn’t.

My tumor is in my lower left abdomen, in the retroperitoneal region. Hence, the position I must assume puts me halfway between lying on my back and lying on my right side, at about a 45-degree angle.  Since the radiation beams will come at me from several different angles in sequence, I have to be propped up and “taped” so I don’t accidentally move or lean forward or backward as the radiation targets the tumor in specific, predetermined locations.  As if that’s not bad enough, no clothing or sheets can cover the treatment area (which, in my case, goes in a semi-circle from below my navel all the way around to my lower back) so, I’m mostly undressed during these twice daily treatments, an indignity I’ve begrudgingly accepted, even if, as has happened, one of the substitute therapists happens to be male!

“Your husband looks terrified out there in the waiting room,” Pam observes one morning as she adjusts my positioning. “Do you think if I let him come in and watch what we’re doing, that he’d feel a little bit better about it?”

Mike agrees to come in for the afternoon treatment.  Mary gives him an in-depth behind-the-scenes tour, explains the entire process, allows him to take pictures at my request, and even encourages him sit in the observation room with her, Stephanie and Pam so he can see me on the video feed while I’m being “zapped.”

When it’s all over, we walk back to Hope Lodge, hand in hand. Mike doesn’t say much, and neither do I. Finally, I ask, “Well, what did you think?”

“What I think is that I hate seeing that happen to you and knowing you have to go through it every single day and that I can’t do anything about it.” Now it’s he who seems to be fighting back the tears.

“Just be with me. Stay close to me. That’s enough,” I assure him.

But even that proves difficult, given that Hope Lodge’s rooms are furnished with twin beds, a sign posted above them warning, “Do NOT rearrange the furniture.”  That night, I toss and turn restlessly, in what’s already become an annoying ritual. Even though he’s on the other side of the room, I know I’m keeping Mike awake.

“What’s the matter? You can’t sleep again?”

“I can’t sleep because I’m not next to you!” I fret.

“Well, we can’t both fit in a twin bed.”

I understand this, but after 24 years, I need Mike near me, now, more than ever.

The next morning, I stand in the shower in an exhausted stupor, trying to wash without erasing the lines Stephanie had so painstakingly drawn earlier in the week.

“Your turn,” I say, exiting the bathroom, only to discover that Mike has rearranged the whole room and pushed the twin beds together.

“Screw the rules,” he says. “We’re married. What are they going to do anyway? Throw us out?”

That night, I doze off, ensconced in Mike’s embrace.

Six down, 36 to go…. 

Jo Ann C. Nahirny, a 1985 graduate of Columbia University and a National Board Certified Teacher, teaches English at Matanzas High School in Palm Coast. Reach her by email here.