Chapter 2: Plot Twists
I did my best to spread out appointments and procedures between the members of my support system. I didn’t want any one person to feel burdened, especially Mark. He would have enough on his plate taking care of me at home. My friend Sharon accompanied me to my pre-surgery checkup, and my sister-in-law brought me to get the radioactive isotopes injected.
As part of my own self care regimen, I took selfies of me with each person to accompany me. I snapped photos of the intimidating machine they used to guide the placement of the radioactive seeds and the nuclear scanner I rode like a carnival ride following the isotope injection. I wanted to document my progress and witness my own milestones of treatment. No matter how much support I had from friends and family in waiting rooms, I faced the painful procedures alone in a skimpy hospital gown.
There comes a time when every cancer patient is stripped of their own clothes and identity. We may be in the presence of medical professionals, but we are profoundly alone. In those moments, we must rely on ourselves and our own coping skills, which can take the form of tears, desperate prayers or stoically enduring the pain and humiliation. If we are lucky, we have access to other more concrete coping techniques.
As a child life specialist, I had helped children and families document their treatment through photos and homemade books. Children illustrated their stories and dictated their own narratives. I prepared many children for painful procedures, and provided distraction and comfort to them while they faced injections, spinal taps, bone marrow aspirations, sutures and the setting of broken bones. With their parents’ help, we practiced how to blow bubbles to relax, how to make choices about where to look during the painful part, and what toys or books might take their minds off their pain and fear. I used guided imagery to help them imagine themselves on a beach or at an amusement park, instead of on a cold, hard, bed in an emergency room.
I remember 10 year-old Nikki well. An ambulance transported her from school, where she had seriously injured her right arm. She arrived at the pediatric emergency room on a stretcher, her arm heavily bandaged. She was surprisingly calm, and I wondered if perhaps she was in shock. Her parents had not arrived yet, and the doctors couldn’t wait for them. They moved her onto a hospital gurney. I stood on the other side of the bed, close enough to speak quietly as the doctors bustled around her.
“Hi Nikki. I’m Debbie. Do you know where you are?”
“Right, the ambulance just brought you in from school. The doctors need to look at your arm to see how to help you feel better. Do you want to tell me a little bit about what happened?”
Nikki looked a little abashed. “I was joking around with my friends in the girl’s bathroom. I climbed up the wall of the stall to tease one of them in the next stall. I don’t know what happened, but I fell. My arm got cut somehow on the toilet paper dispenser.”
“Now that’s original!” I smiled.
“Yeah,” she grinned sheepishly.
“Well, you will have a good story to tell.” I said. “My job is to help you understand what the doctors will do, and if you want, to give you something more fun to focus on while they fix you up.”
As I was speaking to her, the doctors began to unwrap the bandages that swathed her arm. I almost gagged at the sight of a large, ragged tear on the inside of her upper arm. The muscle and fat hung from the bloody gash. I took a deep breath and refocused on Nikki’s face.
“So, first the doctors are going to wash your arm with a lot of sterile water, to make sure that there aren’t any germs before they close your wound. They are going to use a really big syringe to squirt the water, but there won’t be any needle attached. Do you want to watch, or would you prefer to imagine yourself someplace fun, like at a beach?”
“Beach,” she said quickly. I was frankly relieved. It should always be a child’s choice about whether or not to look, but her wound was ghastly. Even I didn’t want to look!
“Okay, so I want you to take a few nice, deep breaths with me, okay?”
I demonstrated some slow belly breaths, and she complied.
“Do you want to close your eyes, or look at me while I help you imagine the beach?”
Nikki chose to keep her eyes open as I began to guide her into a make believe scene.
“Okay, I want you to keep breathing nice and deep. Imagine that you are standing on a vast, beautiful beach, looking out at a bright blue ocean. Who would you like to be with you on the beach?”
“My mom,” she said.
“Okay, so your mom is with you. You are both in your favorite bathing suits. The air is warm and sunny, and a gentle breeze is blowing. I want you to dig your feet into the sand and tell me what it feels like.”
“It feels hot on the top and cooler underneath the deeper my toes go.”
We continued along this path. I supplied prompts and she filled in the blanks, her eyes locked on mine as the doctors irrigated her arm. This child’s ability to block out the fear and pain, even during the actual suturing of the wound, was remarkable. She stayed on that beach during the whole procedure, calm and engrossed in the fantasy.
I thought of Nikki and her bravery and took long, deep breaths as the radiology tech squeezed my breasts one at a time into the unforgiving machine and the needle pierced my skin again and again.
The day of surgery arrived quickly. My friend Edna trekked in from Brooklyn to be there for me and Mark. We gathered in the waiting room of the surgical day unit and sat in the small clusters of comfortable seats. Alyson, a past student of mine and child life specialist at the hospital, met us there and offered up wonderful distraction from the impending procedure. Catching up with her and hearing about her life and job kept me from obsessing and worrying. The head of the volunteer department and the patient librarian, long standing colleagues of mine, popped in to wish me luck.
Right before they called my name, another blessing walked in the door. I’d known Sister Mary, a nun who served as a chaplain in the hospital, for over 25 years. We bumped into one another getting into the elevator that morning, and she promised to stop by before my surgery. Her cheerful and soothing presence reminded me of how much I’d enjoyed working with her over the years. She joined hands with us and said a prayer over me. I can’t remember the exact words of it, but I do remember how fitting it was, how inclusive, unassuming and simple. Something about God following me like a loyal puppy dog. I felt loved and protected in that moment, probably the best kind of armor to don before a battle. The timing was perfect. Right after Mary’s “Amen”, I heard my name. I looked up to see a young woman holding a clipboard, standing in the doorway to a hall. We all stood and followed the woman through the door and down a small hallway that led to smaller individual waiting rooms and the presurgical area..
I exchanged my street clothes for a gown and robe, and a skilled technician retrofitted me with an IV. A nurse sat me down to give me advice about post-op care. She provided me with a list of exercises to do to help me regain motion and strength in my arms, and essentially told me about all the things that could go wrong and what to look for. I realized later that I retained very little of what she told me. Maybe I was more nervous than I thought at the time.
Note to self: “Always have someone with you to take notes when receiving medical information.”
The anesthesiologist stopped by, as did Dr. Fodor and his resident. They all asked the same questions, making sure i knew what the surgery would entail and that I hadn’t had anything to eat or drink since midnight.
After what seemed like forever, I kissed Mark goodbye, hugged Edna, and headed off with the nurse to the OR. I passed curtained bays and other patients with their accompanying IV poles and hospital garb. They appeared so vulnerable to me, holding their gowns closed with one hand as they shuffled along in their hospital slippers. They looked like me.
Frigid air and bustling surgical team greeted me as the OR doors swung open. The operating theater was a marvel of modern technology. Huge flat screen TV monitors perched like Big Brother on the walls. I walked over to the operating table and felt grateful for the warm blankets that were pulled over me as I lay down. My arms splayed out on supporting boards perpendicular to the bed.
I couldn’t help but think, “I feel like Jesus Christ on a cross!” Sacrilege aside, it wasn’t the greatest image for a positive mindset. But what can you do? We don’t always choose where our imagination takes us.
The medical staff worked quickly, positioning my body, attaching EKG leads to my chest and back, and a blood pressure cuff to my right calf. Believe it or not, that was the thing that hurt the most, as my leg cramped in its vice-like grip.
Note to self #2: “Never tell a kid that a blood pressure cuff doesn’t hurt.”
With my IV line already in place, all they needed to do was hook up the anesthesia drip, and the room began to fade. I think I remember saying hi to Dr. Fodor, and asking them to play Bruce Springsteen music during the surgery, but everything blurred around the edges and I was gone.
I awoke to Edna and Mark at my bedside, feeling loopy, but not in any pain. A compression bandage encased my chest and I shivered uncontrollably. I asked for some blankets and they appeared quickly, warm and comforting. With the wonders of modern medicine, or should I say – managed healthcare – there was no overnight stay for me. As soon as I could drink a little juice, and eat a cracker without any trouble, they booted me out the door. Mark hailed a cab and soon I was home in my own sweet bed.
There were 4 incisions altogether, one under each arm to remove my sentinel nodes and one in each breast to remove the 3 tumors. I was pretty sore for the first few days, but the pain was very manageable, and I only took the prescription pain killers for the first 24 hours. It did take me quite some time though before I could raise my hands above my head enough to dress myself. To my dismay, many weeks passed before I could walk my dog. I replaced my morning walk with daily exercises to build up my mobility and strength. I stood at arm’s length from the wall and inched my fingers up it, a tiny bit more each day. It was painful and frustrating how slow the improvement came, but that was small potatoes compared to what happened next.
“I’ve got good news and bad news,” announced Dr. Fodor at my post-operative checkup.
I braced myself. I didn’t like the sound of this. Mark squeezed my hand a little tighter.
“The good news is that you are stage one, like we thought. There are no cancer cells in your lymph nodes.” I didn’t even get to let out a sigh of relief before he continued with the bad part.
“The bad news is that we weren’t able to obtain clean margins.”
“What does that mean?” I asked, although I already knew the answer. There were cancer cells at the very edges of the breast tissue he had excised, so he needed to go in again and remove more.
“Another surgery, as soon as you’ve healed from this one. And I’m not sure the results will be as good this time around as far as the shape of your breast.”
“I don’t care what my breast looks like,” I said valiantly. It was easy to be brave and egoless in front of the surgeon. The tears would come later. “Just get those murderous cells out of me.”
And so he did. Six weeks later, there I was again, in the waiting room of the ambulatory surgery department, this time with my parents in tow. I knew what to expect for the most part, if you discount my new worries regarding just how much of my right boob would be left after this cut. But I had some extra support that day in the form of The Clown Care Unit of the Big Apple Circus.
John Grimaldi, aka Dr. Quackenbush, and his partner, serenaded me outside my little waiting room, juggling and strumming a ukelele. John presented me with a red clown nose that I donned with pride and wore into the OR. I’d worked with John over the years on the pediatric ward, but our ties went a few layers deeper than that.
For several years, I’d co-led a monthly support group for the clowns. No, they didn’t need help working through their red nose and big foot issues. They needed a place to talk about the very tough things they witnessed in their hospital work with sick children. Working with the Clown Care Unit was one of these full circle kind of deals in my life. My very first career aspirations involved the idea of running away to the circus. Even better, I had known John, since I was twelve years old, when my parents brought me to him for juggling and unicycling lessons. Other kids played the piano, but I just had to be different. Now, John’s presence meant the world to me, as he brought laughter and whimsy to gentle such a frightening time.
As I healed from the second surgery, another surprise came with the arrival of oncotype testing results. This test looks at the tumor and makes predictions about recurrence based upon the molecular structure of the mass. Dr. Fodor sent off two of my tumors from my right breast to the company that performs the test. This was standard procedure dictated by the insurance companies, who didn’t want to pay to test all three tumors if they didn’t have to. My tumors had great numbers, showing a tiny rate of predicted recurrence. But then, at the insistence of Dr. Stein, the medical oncologist on my team, they sent in the third tumor, and a different story came back with the results. The numbers were high.
“What does that mean?” I asked Dr. Stein, who’d taken over my care following my surgeries. It was like a relay race, Dr. Fodor handing the torch to Dr. Stein, who in turn would hand it to the radiation oncologist.
In my heart of hearts, I knew what she was going to say, but I had been practicing denial pretty successfully over the past two hours in the waiting room. I’d arrived alone, assuming this was a routine appointment to discuss the daily medication I’d need over the coming years to block estrogen and keep my tumors from recurring. At the check in desk, the cheerful millennial tapped my birthdate into her computer.
“Oh, okay. So you’re here for chemotherapy today. Did you get your blood test downstairs yet?”
I felt my neck flush with the instant expansion of capillaries. “You must be mistaken. I’m just here for a consultation with Dr. Stein.”
“Well, it says here that you are scheduled for chemo today. I’m sure the doctor will clear it up. But in the meantime, you need to go downstairs to the blood draw room to have your blood tested before you see the doctor.”
Numb with fear, I followed her instructions, re-boarded the elevator down to the lobby and found the blood draw room. When I returned to the waiting room upstairs, I began the excruciating two-hour odyssey of self-talk.
“You are fine. This is all a mistake. They see so many patients. This kind of thing happens all the time.”
But now, sitting on the other side of the doctor’s expansive desk, there was no escaping what Dr. Stein had to tell me.
“It means that you have two different types of tumors,” she said. Two, with an oncotype reading of 2, don’t need chemo. The other, with a reading of 36, gives you a higher percentage of recurrence. Chemotherapy is recommended. There are three types, mild, moderate, and the strongest. The mild chemo will lessen recurrence by…”
Dr. Stein continued to speak about percentages and ratios and side effects, but I couldn’t follow her. I stared unseeing at the painting on the wall above her head as numbers and data filled the room and the roar of blood filled my ears.
All I could think was, “I have to have chemo. This isn’t right. They told me I didn’t need it. And for God’s sake, I had to hear this first from the fricking receptionist? I don’t even know this doctor, with her meticulously coiffed blonde hair, short dress and stiletto heels. Who the hell does she think she is? Who is she kidding? I want Dr. Fodor! I shouldn’t be listening to this alone. I want Mark!”
Eventually, I was able to come back to some kind of focus. Dr. Stein was saying, “I know this isn’t pleasant, but I guarantee you, in a year this will be a blip on the radar of your life. You won’t even remember it. Now why don’t you come over to the examination room and I’ll take a look.”
“Okay,” I said, my trust in her evaporating in the wake of what felt like false reassurances.
I had no idea at the time that Dr. Stein would be the one to save my life. Dr. Fodor hadn’t planned on sending the third tumor for the oncotype test, but she’d insisted. If it weren’t for her, I may have ended up with a much higher chance of recurrence or metastasis. Not only did Dr. Stein show herself to be extremely competent and kind throughout my treatment; she was my champion. Dr. Stein and her nurse were with me every step of the way and through every single plot twist (of which there were many!) with empathy and reassurance. My trust in her would be rekindled and well placed. So first impressions would be tossed aside as we went along. But in this moment, I felt like a shrew.
“I would like to call my husband and have him here for the rest of this conversation.”
My hands shook as I reached for my cellphone.
“I didn’t think I needed you for this appointment,” I said when Mark picked up the phone. “But they’ve just told me that I need chemotherapy and I don’t know what to do. Can you come meet me here? I am in the treatment room in the back.”
Mark worked about 12 blocks from the hospital, and he was there in 10 minutes. He looked positively unmoored. Dr. Stein introduced herself with a handshake and a sympathetic smile.
“What I’ve been telling your wife is that her tumors have varying numbers on the oncotype test. She will need chemotherapy. She can choose between mild, a course of 8 sessions each two or three weeks apart, or she can choose moderate, which will have more side effects. The difference between the two boils down to about a 2% difference in the chance of recurrence. We are recommending the mild track.”
I could tell by the look on Mark’s face that he wasn’t processing much of what she was saying either.
“Well, I guess we’re not going on vacation,” I snorted.
My half-hearted attempt at lightening the mood with sarcasm fell flat. We had both been looking forward so much to a trip to Iceland and Hungary this coming August. We hadn’t had a vacation away in several years. I knew that my tone made Mark feel invisible and dismissed, as if I really didn’t care. Truth be told, I cared deeply, but in that moment, the disappointment of this unexpected turn of events and the terror of chemo eclipsed everything else for me. I had seen too many people, children and adults alike, suffering the ravages of chemo. Of all the various forms of treatment, it was the one that filled me with the most dread. I had witnessed enough patients die of sepsis to know that it wasn’t always the cancer that killed you, but the opportunistic infections that could run amok with an undermined immune system.
This wasn’t the first plot twist to my cancer story, and it sure wasn’t the last. But it was the one that changed the trajectory of my coming year the most. Although Dr. Stein reassured me that many people work right through chemo, even health care workers, I just couldn’t picture myself teaching at night and traipsing in and out of hospitals observing grad students during the day. I knew that my immune system would be compromised, and hospitals are notorious breeding grounds for all kinds of awful bacteria.
But thank God I had options. I know that not everyone does. Not one month prior to my diagnosis, I’d turned down a sabbatical for the coming year. Although I’d earned it, I was so immersed in my work at the college that I couldn’t imagine taking a year off. Now, it seemed like the perfect answer. I wouldn’t endanger my job or career by taking time off to focus on my treatment. My insurance coverage would remain in place. This was a gift like no other. I grabbed ahold of it with both fists and hung on for dear life.
4 thoughts on “Driving the Camel: Installment #3”
Deb — Thank you for writing this. Your story is beautifully told: courageous, gripping and real. I can hardly wait for the next installment.
I remember so much of this. It brings back lots of emotions. As usual, it is so well-written and perceptive. It is a great story (except for the part that is is real)
Love, Jeff Date: Wed, 13 Jan 2016 17:33:44 +0000 To: firstname.lastname@example.org
Wow Deb. You’re an incredible writer. Thanks for sharing such an intimate part of your life.
LikeLiked by 1 person
Deb, I love your writing. It is so expressive and real. Thank you for sharing your story. I wish I had been there to help during that time.
LikeLiked by 1 person