Editor’s note: Jo Ann C. Nahirny, a veteran English teacher at Matanzas High School and FlaglerLive’s Teacher’s Trenches columnist since last year, is taking an extended medical leave from her responsibilities at Matanzas beginning on September 19, when her treatments start. Surgery will follow, likely in November. Her oncologists have told her she cannot return to work until after Christmas break. She is now hoping to get a video camera set up and connected to her classroom computer, so she can stay “connected,” by possibly doing some videoconferencing or Skyping with her students and classes between treatments, when she is physically able to do so.
A teacher’s trenches, especially today, don’t end in the classroom or with teaching: FlaglerLive has invited Mrs. Nahirny to take her very loyal readers with her on every step of her journey in Gainesville, with regular columns as her health permits. Mrs. Nahirny has graciously accepted. You can read the column where she revealed her cancer’s recurrence here.
It’s 3:37 a.m. I lie awake, again, having tossed and turned restlessly for nearly an hour. I’d hoped to sleep soundly, since I’d been exhausted when I climbed into bed five hours earlier. Giving up, I tiptoe out of our bedroom, closing the door, trying not to disturb my husband, whom I knew had found the day’s events equally as tiring and disturbing.
We’d spent most of our morning in the Radiation Oncology Department at the Davis Cancer Pavillion at Shands UF in Gainesville. Since recently learning that my cancer (retroperitoneal sarcoma) had recurred after a six-year remission, Mike and I have spent an inordinate amount of time using up our already scant “sick days,” driving the 100 miles from our home to Gainesville for multiple procedures. Friday morning’s appointment put the icing on the cake; we finalized my treatment plan.
Although I greatly preferred to be in my classroom that morning, working on SAT questions, narratives and persuasive essays with my nearly 200 students at Matanzas High School, I have to admit that the designers of the waiting room we sat in had gone to great lengths to make it warm and welcoming. Classical music played softly over speakers. Partially-complete, 1,000-piece nature scene puzzles lay on round tabletops, beckoning patients and caregivers to attempt them. A coffee machine snorted and oozed warm, aromatic liquid into glass carafes below. Magazines of all genres lay scattered about. A knotty pine bookshelf stocked with dozens of donated paperbacks and novels urged, “Free. Take one.”
Scanning the room, I can’t help but wonder what type of cancer the other folks there had. The 60-ish couple across from me bickers about forms and paperwork. Did she have breast cancer perhaps? Or was it he with thyroid cancer? And what about the elderly woman across the room, wearing the babushka to cover her hair loss? Pancreatic? Ovarian? And the biker dude sporting the long, gray ponytail and boots? Prostate? How different I seemed from them. Yet we shared so much.
My reverie was shattered at the sound of someone bumbling my last name. “ Na-hear-knee? Nuh-reeny? Jo Ann?”
As we approach her she asks, “How do you pronounce your last name?”
“Nahirny,” I respond flatly. “Rhymes with Ernie.”
“Oh, that’s easy,” she laughs, leading me and Mike down a long, bright white hallway.
After reviewing the same formulaic information I recite to every health care worker at each Shands appointment, (including verifying that I have a living will and advance directives in place), I’m given a hospital gown to wear. The attendant relegates my worried husband to a chair in an adjacent corridor, where he reluctantly and half-heartedly resumes reading Douglas Reeman’s The Ship Must Die, while clumsily clutching my purse and the 58 partially-graded vocabulary quizzes I’d been scoring.
Having donned the huge, backless garment clearly designed to be worn by a Sumo wrestler, I try, rather unsuccessfully, to hold the ends together behind me as I exit the restroom, hoping to retain some shred of dignity. It’s time for my “simulation CT scan.”
“My name is Tom, and I’m one of the therapists who will be working with you today.”
Tom? That was my grandfather’s name. I take that as a sign from above. (Honestly, I’ll take anything I can get at this point). Pop-Pop’s looking out for me, I hope.
Tom tells me to lie on a flat x-ray table on my right side, more or less in a fetal position. He explains I’m not to move, and that he and others will “mold” my body the way they need it to be for the best access. One person rearranges my feet. Another intertwines my fingers beneath a skimpy pillow. Still a third manipulates my knees and left hip. I hear a hissing, and the table seems to rise. Its blue “mattress” inflates and begins to conform to the contorted position the technicians have placed me into. A sort of casting of my torso is literally being created, slowing encompassing and enveloping me. Once radiation treatments begin in a few weeks, I’ll literally “climb” into this immobilization device, which will help me stay absolutely still. The mold ensures I’ll assume the exact same position every time, and that radiation beams will target the same precise location on my lower left abdomen every time, too. As all this transpires, red laser lights dance around the room.
“Don’t look at the lights,” I’m warned by a voice I cannot see. “If they come near your face, close your eyes.” I wordlessly comply.
Next, I feel tugging and the removing of portions of the covers and gown. I feel the cold chill on my exposed skin as it’s swabbed with pungent cleansers.
“We’re going to be drawing some lines on you now in various places on your body. Don’t worry, they’ll eventually come off. The lines will help us know where to do the tattoos. That’s when you’re going to feel slight needle pricks. Don’t move, even if it pinches.”
I feel like a human easel. Black, felt tips glide across me. Then, needles puncture my skin multiple times as five tiny tattoos are etched onto various spots on my left side: on my shoulder, hip, lower back, calf and abdomen. I nearly flinch at each poke, but Tom’s warning echoes in my head: don’t move!
My identify shifts rather seamlessly from human easel to convicted felon as yet another tech now snaps close-up, digital shots of various portions of my body from numerous angles, including my face. Noticing my puzzled expression she explains, “The pictures will help the therapists to recognize you and get you into the right position every day.”
With the humiliation finally over, I next meet Karen, a registered nurse. (Another sign from above? Karen is my confirmation name, and both my cousin and sister-in-law’s name. I’m feeling definite spiritual reassurance now.) Karen extensively reviews when, where and how the treatments will proceed and discusses the possible side effects I could have.
“Whatever happens, let us know, and we’ll help you try to manage it. For example, you’ll probably notice some changes in your skin at the treatment site. It could get red, or irritated or dry, or even darken noticeably. You may also experience nausea, vomiting, diarrhea — digestive type things. Mostly you’ll be dealing with fatigue. That typically starts a few weeks into treatment, and often disappears a few weeks or months after treatments ends. But in some patients, it never goes away.”
Great, I mentally lament, I’ll be even more tired, but still probably won’t be able to sleep. I already know what that feels like.
At the conclusion of this portion of the appointment, we get a tour of the facility, a complimentary parking permit valid for two months, and my list of radiation appointments – daily doses at 9 a.m. and again at 2:45 p.m every single weekday for the rest of September and October. My God! Twice a day? I’ll be glowing in the dark. The side effects must be starting, because I already feel like puking.
Karen then explains that Mike must be with me for every appointment every day, and be available daily to help me manage the side effects. She tells us to make plans to stay in Gainesville for the duration of the treatment. My mind goes into financial overload, and visions of bankruptcy dance in my head, as I contemplate the implications of simultaneous lengthy, unpaid absences from work not just for me, but for both of us, all while trying to juggle college tuitions for two kids and pay our usual monthly bills. And just where would we stay in Gainesville anyway?
Karen refers us to the American Cancer Society’s Winn-Dixie Hope Lodge.
“It’s only about a mile from here. You can easily walk to and from here, because Jo Ann’s going to need daily exercise while undergoing treatment. Or, if she’s feeling poorly, there are Shands shuttle buses that run every few minutes. And by the way, you can stay at the Hope Lodge at no cost. It’s totally free.”
Mike and I exchange glances at the word “free.” Free is good. Free fends off financial ruin. Free could help us save a few bucks to pay our other bills, especially with limited income for a few months.
As we make our way slowly through heavy Gator traffic to Hope Lodge for a tour, I ask, “I wonder what all this is going to cost?”
“She just told you that it’s free,” Mike responded.
“No, what I mean is, what will twice-daily radiation treatments cost? Notice they never talked about prices.”
“Well, our insurance will pay most of it, I guess, and we’ll just have to pay the 15 percent co-pay, whatever amount that works out to be,” he said.
As Mike navigates toward Hope Lodge, I type into my iPad, “What does radiation therapy cost?” and quickly scan some of the information in the hits Google gives me, while Mike looks for a parking space. I learn radiation therapy can be extremely costly because it requires very complex, high-tech equipment and the services of many health care professionals. One treatment can cost up to $2,000, and I need dozens of treatments!
“Are you getting out?” Mike urged. “They’re expecting us.”
“I’m just trying to figure out how broke I’m going to make our family,” I say. “Even at 15 percent of $1,000 to $2,000, our portion alone will be something like $150-$300 per treatment! That will be thousands of dollars by the time this is all over, and that’s before I even have the surgery! How will we afford that?”
“Don’t worry about it,” Mike urges, as he grasps my hand and leads me to the entrance. “I’ll deal with the insurance company. For now, just think about getting better. It’ll all work out somehow. Let’s check out this Hope Lodge, because it’s probably going to be our home away from home for at least a month or two.”
Again, I am roused from my reverie. Am I awake or asleep? It’s dark. I hear rain and thunder outside. Our two beagles snore quietly at my feet, one on each side. A gentle hand and a whisper jolt me to attention.
“What? Huh? What?”
“What are you doing?” Mike asks. “ Why are you out of bed?”
“I couldn’t sleep because I had so much on my mind. So I got up to write for a little while.”
“A little while? You got out of bed nearly two hours ago. Come on,” Mike suggests. “Come back to bed. You need to rest. Let’s get some sleep.”
And we do…for now.
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. In her next piece, she will discuss moving into the Hope Lodge, and the mental and physical challenges of what she’s started to call her “life interrupted.” Reach her by email here.