Part Two Outside my Comfort Zone
Chapter 5: Right on Time
9 months passed more quickly than I’d expected. Being Auntie Deb, writing, attending treatments and doctor appointments, hosting visits from well wishers, and navigating medical plot twists and side effects filled my days. One plot twist in particular was almost funny if it weren’t so worrisome. Beginning with the second round of chemo, within 24 hours of every infusion, my right breast would turn bright, stoplight red. After a trip to the emergency room and a few days in the hospital with a truckload of antibiotics, the doctors told me I had cellulitis. From then on, after each chemo round, I would awaken the next day feeling like a warped version of Rudolph the Red-Nosed Reindeer, and start yet another round of antibiotics. And yes, I wrote a song about that too.
To counteract my daily battles, Mark did his best to schedule things at night and on weekends that we could enjoy together, especially nights before surgery and chemo. We went to many plays, concerts, lectures and baseball games during that time. Toward the end of my radiation treatment, we escaped for a few days to visit his family in Florida and take in spring training, And even though I fell asleep for a portion of many of our outings, the distraction and Mark’s hand in mine were a balm to my heart and healing body.
Then, seemingly out of nowhere, the end of treatment snuck up on me and whacked me on the head, none too playfully. What I thought would be a huge milestone to celebrate turned into a marshy landscape pitted with hidden sinkholes. After gliding through treatment with a positive attitude and no shortage of energy, the very end of treatment rolled over me like a tank. It took extraordinary energy to brave the crappy winter weather and walk each day to and from radiation therapy. We had record low temperatures and snowfall that year. Getting anywhere in the city was a brutal task. I was exhausted, deeply sad, and once more, highly anxious.
I decided it was time to reach into my arsenal for another secret weapon. I called upon the oncology social worker at the breast center, someone I’ve known for 25 years from my earliest days working at the hospital. Leah shepherded me into her office, and I sat down and spilled out my woes.
Leah smiled and said, “Well, you’re right on time. This is what the end of treatment is all about.”
I snuffled into a Kleenex. “You’d think I’d be doing cartwheels to celebrate.”
“Yes, but the reality is that along with something to celebrate, you are losing the structure of a highly competent support system. You’ve had an incredible medical team at your side throughout this entire process. You may be happy not to have appointments and painful treatment anymore, but now you will have to say goodbye to every doctor, nurse and tech who’ve kept watch over you. It’s daunting to be on your own after all that help.”
“It’s terrifying,” I admitted. “And I’m so damned tired. I can’t imagine having enough energy to do much of anything.“
“Most patients experience fatigue for at least as long as their treatment lasted.”
“So I’m gonna feel this way for the next 9 months?” I asked, horrified.
“At least,” she admitted. “For some it can last several years.” I didn’t like her answer.
“And the crying?” I asked.
“What about it?”
“I can’t stop crying,” I told her, and I feel so frickin’ anxious all the time.”
“Many people suffer depression and anxiety post treatment. Getting back to your routine, whatever that is. Work. Family. That can help.”
“But I’m not due to return to work until next fall. I’m on sabbatical for the academic year.”
“What are your plans until you return?” she inquired.
“In March, I’ve been invited to give a keynote address at a conference in New Zealand. I’m writing some professional articles and working on a book. And I’ll be going on a medical mission to the Palestinian Territories in May.”
Leah laughed. “Well you certainly have a lot to look forward to. It doesn’t sound to me like you’ll be lying around feeling sorry for yourself.”
I tucked away her words for later use. I knew that having something to look forward to was part of making meaning of my anguish. It would get me up in the morning.
“You don’t think that I need antidepressants or antianxiety meds, do you?”
“Not unless you find that the symptoms are debilitating.”
I left her office somewhat relieved. It’s not that I had anything against medication. But I’d survived the odyssey thus far without it, and I felt a certain satisfaction in that accomplishment. I had a safety net in my bedside table drawer, a prescription for anti-anxiety meds I’d used briefly when Mark was hospitalized for pancreatitis and my mom was in the middle of cancer treatment. Somehow just knowing it was there was enough, in case something reared its head that was truly unbearable. I hadn’t dulled my experience with alcohol either, mostly because I was afraid to add alcohol to the cocktail of anti-cancer drugs and antibiotics cycling through my system. I’d gone through this whole thing stone cold sober.
And so I continued to face my Mt. Everest, hoping that with each passing day I would feel a little better. I cried and slept and prayed and sweated out hot flashes that had replaced my period a month into chemo, premature menopause. I fought my urge to micromanage everyone around me. I must have driven Mark crazy trying to control him when I couldn’t control my own mood swings. But true to form, he didn’t run away or murder me in my sleep, although he may have considered it.
Before I knew it, March had arrived. I got up, packed my bags, and went to New Zealand. I am making it sound simple, but of course it wasn’t. I’d learned the hard way that nothing comes without a plot twist attached. We’d planned a three-week trip, arranged around the invitation to keynote at the Hospital Play Specialists of New Zealand’s annual conference in Auckland. It was one of the many blessings that had rained down on my life during treatment. Mark and I expected to make a vacation out of it, since we’d had to cancel the summer’s trip due to my treatment regimen. But one week before the trip, Mark found out he wouldn’t be able to join me because of work. Mark was in a new job raising a fund in private equity. The fund was finally about to close and he couldn’t leave the country.
Panic surged through me at the thought of traveling alone outside of the United States for the first time. I was already worried about how I would cope physically with the trip. Would I have enough energy? Would the medication I was now taking cause me to suffer a pulmonary embolism or stroke on the long flight? The chemotherapy had affected my brain, and word retrieval had become a daily challenge. What if I had a major brain fart during my keynote address and looked like an idiot?
Now I had a new set of worries. How would I negotiate the driving on the left side of the road in a strange territory? How would I feel spending three weeks alone in a foreign country? What if I got sick, lost, or hurt? Was it safe for me to travel alone as a woman? I worried that I would be so lonely and sad about Mark not being with me, that I would not be able to enjoy the trip. Maybe I shouldn’t go at all.
I wanted to ask advice from my parents. But it wasn’t emotionally easy to talk with them about my situation. I hated revealing that Mark wasn’t coming with me. They were the kind of couple that did absolutely everything together. I’d always felt a bit less than about this fact. I found shame in not being attached at the hip like my folks.
In truth, our love looked a lot different than my parents’ idea of love in some wonderful ways. My relationship with Mark allowed me full range to tap my potential. He supported every career move I ever made, emotionally and financially. He championed my successes and propped me up when I failed. But old messages are persistent little boogers. No matter how much I enjoyed my independence, a bitchy little inner voice would lie in wait to sabotage what I knew to be true.
“You and Mark won’t ever measure up to your parents,” it whispered. “Their kind of love is not for you. If Mark loved you as much as your father loves your mother, he’d never put work before your happiness.”
“Shut up,” I told the voice. “What do you know anyway?”
“I know that your mother would never travel anywhere without your father.”
“Well maybe she’s missing out,” I answered, albeit with wavering confidence. When I finally got up the nerve to speak with my parents, I secretly hoped they might talk me out of traveling alone.
I sat in their sunny, small living room, filled with familiar furniture and knick-knacks dating back to my childhood. They’d moved into a continuing care facility fairly recently, but managed to keep the comforting feel of our family home. My mom handed me a lap blanket and a cup of hot tea. My dad turned up his hearing aides.
“So, I have something I need to ask your advice about,” I began. “We’ve just found out that Mark can’t leave town until his fund closes. And I’m supposed to leave for New Zealand next week. I know I can’t back out of the keynote, but I am considering cancelling the last two weeks of the trip.”
“Why?” asked my mother in surprise.
“Because I’m terrified of travelling alone,” I said.
My dad leaned forward in his chair. “I think this is a great opportunity to use what you’ve learned from your cancer,” he said. “You’ve been so brave through the whole thing. Tap into that now. Going it alone on this trip will be nothing after what you’ve already been through.”
“I think you will surprise yourself,” added my mom. “You’re going to have the time of your life, and then you’re going to come back and share wonderful stories with Mark.”
I was touched by the lack of their judgment about Mark’s work demands. My inner voice was a much harsher judge compared with my parents’ acceptance and love for both of us. In the end, it was their faith in me that gave me the most courage. They assured me that would I be fine and urged me to go the distance. Mark seconded their vote of confidence, encouraging me to make the most out of this opportunity.
Thus began my first solo foreign travel, about as far away from home as you can get. I spent a week gathering and packing items that would increase my odds of surviving the journey. Compression socks – check. Baby aspirin – check. Antibiotics – check. Antibacterial wipes – check. Parachute – just kidding. Mark and I clung to each other at the airport, both of us crying. Head down, sniffling back snot and tears, I tried not to bash people with my overstuffed backpack as I made my way down the aisle. An impolite “Oh Shit!” escaped my lips when I saw my assigned seat. It was the third seat in on a four seat middle row of the huge plane. My doctor had instructed me to get up, stretch, and walk every hour of the initial six-hour flight. It would take three planes to get me to New Zealand, the first taking me to LA.
“These people are going to hate me,” I thought as I settled into my seat.
I worked out a system where I took turns clambering over the women to my left and then the one to my right, apologizing each time. They were gracious and refrained from grumbling. But being sandwiched between them made me feel claustrophobic. On one of my stretching breaks, I leaned against the cabin wall waiting for a fellow passenger to exit the washroom. My anxiety was rippling around the edges of my consciousness and in that moment it crystallized. I was hurtling across the globe, heading 17 time zones away from the safety of home and family. There was no turning back, no getting off the plane, no avoiding three weeks on my own. Everything unknown lay ahead, if I made it that far. Adrenaline coursed through my veins and I felt the instinctual urge to run, but there was nowhere to go. Finally inside the washroom, I leaned against the wall and whimpered. Immediately, I felt foolish doing that.
“You chose this and you’re gonna be fine,” I said out loud.
I said it again for good measure, a couple of times, while I did my business, washed my hands and straightened my clothing. I took a few deep breaths before heading back to my seat.