I have always thought that hospitals might be a bit like prisons.
Everyone wears the same uniform- patients AND staff. The food is largely inedible (though scanning the menu is often the most exciting part of the day). You can’t choose your roommate. Visiting hours are restricted. You really can’t leave whenever you want to. You are tethered to your bed by an IV, almost as though you were in shackles...
If you move a muscle, an alarm will sound, and the guards will come rushing in. You don’t get much sleep, you are dependent on complete strangers to assist with the most basic bodily functions, and you are usually counting the days until you are freed. When you are, and you get your first gulp of fresh air, you vow that you will never go back.
In May, 2007 I was hospitalized at Massachusetts General Hospital for lung surgery. It was not my first “rodeo.” I had been a Hodgkin’s survivor for over 35 years at that point, and I had done my share of “time” in hospitals. I needed a biopsy to determine if the nodules on my lungs that were slowly multiplying in number and growing in size were malignant. I went into surgery not knowing if I would reemerge with two lungs or something less than that. I was lucky- my nodules were benign- likely the product of scar tissue from cobalt radiation.
On my last night in the hospital, I wandered down to the Family Waiting Area- the common room at the end of each hallway where families rarely met but staff frequently lunched (and inevitably when I was NPR- as in no food for hours. As in STARVED.) I stared out at the Boston skyline, clutching my hospital gown to my waist in a feeble attempt to avoid exposing my derriere, and browsed the intellectually stimulating rags, such as “In Touch,” “OK,” “Entertainment Weekly,” and the gold standard, “People Magazine.”
I had just settled into a gripping article about the Kardashians when a woman about my age was wheeled into the room by her family. She was swathed in hospital blankets. Her neck was covered by a large bandage. We nodded to each other. After a few minutes, she joined me at the floor-to-ceiling windows. Prison talk commenced.
“So…. what are ‘ya in for?”
“Me? I’m doing five to ten for possible lung cancer. Turned out to be a misdemeanor. Benign. You?”
“Esophageal cancer. But they got it early. I’m getting out tomorrow for good behavior.”
“Yeah. Sucks big time.”
She introduced herself as “Donna,” and, while her husband and two adult children made themselves busy, clearly half-listening, we dove into what got us here to begin with- the origin of our “crime.”
“So why did they think it was lung cancer?” she asked.
“Well,” I said, “It’s kind of a long story. The truth is, I had Hodgkin Lymphoma when I was a teenager. It’s a cancer of the lymph system….”
I didn’t get to finish the sentence. Donna’s face began to crumble. Her eyes widened as if she had seen a ghost.
“Oh my God. You had HODGKIN’S??” she said, almost as a whisper.
“Yeah” I replied, shrugging a little, unsure why she reacted so emotionally.
“SO DID I!” Donna exclaimed, loud enough to cause her family to literally jump off the couch and join us at the picture window
“Oh my God. You’re KIDDING, RIGHT? For REAL? I don’t believe it!” I said, and we reached forward to embrace each other, laughing and crying at the same time, unable to comprehend what had just happened.
I had never met another adult survivor of Hodgkin’s. Neither had Donna.
What followed was a completely improbable “Tale of Two Cities.” As it turned out, Donna and I had almost the EXACT same medical history- diagnosed as teenagers, cobalt radiation and MOPP chemotherapy, Thyroid cancer, and heart disease. We both had open heart surgery to have our aortic valves replaced- by the same cardiac surgeon at Massachusetts General Hospital. We shared the same thoracic surgeon. He had just operated on both of us within hours of each other.
Donna’s family had heard every word of the conversation and were every bit as dumbfounded as we were. Everyone was in tears. Donna’s daughter finally spoke up and said, “Mom- you guys have GOT to exchange numbers. You HAVE to see each other again and stay in touch.”
We grabbed the only thing that we could- a paper napkin that was left on a side table, tore it in two, and etched our phone numbers in pencil (the only writing tool allowed in prison.) After a few more minutes of exchanging stories and gabbing as if we were already old friends, we both returned to our rooms, exhausted but elated. We would see each other soon. We would give ourselves a few weeks to heal, and then we’d meet again.
Back at home, I dove into my old routine, chasing after kids and tending to the small horse farm that was my dream home. As my surgery was minimally invasive, I recovered quickly. I knew that Donna had a tough job ahead of her, especially if she needed more chemo, so I decided to hold off on contacting her. She had my number, so she could call me when she was ready.
In the meantime, I added esophageal cancer to the growing list of possible secondary effects from my earlier treatment. I hadn’t known about that. One more thing to be terrified of. There were many days when I wondered what would “get” me in the end. Another cancer? A heart attack? Pneumonia? How could I possibly live a long life with all the things that were threatening my survival, waiting in the wings, ready to pounce when I least expected it?
Weeks passed. Before I knew it, the fall was upon us, and I had not called Donna, nor had she called me. I decided I would try to contact her. That paper napkin was tucked away in a safe place. I just had to find it.
I spent hours searching. “It must be somewhere,” I kept saying. “It didn’t just disappear. Please God, after all these years of having no one, please don’t let me lose this person. She’s the only one I know.” I finally resorted to calling the hospital. Of COURSE they couldn’t tell me anything. Donna’s personal information was protected by HPPA. I should have known that. I kept looking.
Finally, on a dreary December day, when I was LITERALLY cleaning out a sock drawer, I found it. Hidden underneath my trusty argyles, I spotted that meticulously folded treasure- my “Donna Napkin.” I raced downstairs to grab my cell phone. I dialed once, got that metallic “This number is no longer in service” tone, and then dialed again. Same thing. “OK, it’s been a while,” I thought. “She’s probably changed her cell number”. I had a last name, so I could just try the White Pages.
I booted up the computer and typed in her name and the town she lived in. “Easy peasy,” I thought to myself. “I’ll have her on the phone in a matter of seconds. It will be SO good to hear her voice again.”
The first thing that appeared was an obituary with Donna’s full name. “Well, THAT’S a mistake,” I said out loud. “THAT’S not her.” Hadn’t I just seen her? She was fine! She said she had a good prognosis! This must be someone else. I typed her in her name again. Same thing. This time I kept reading. It was her. It was Donna. She had died two weeks earlier.
I could swear that someone had punched me in the stomach. I felt sick. I sat there, staring at the computer screen, willing the words to change into a more acceptable truth. They didn’t.
I sobbed as though I was trying to rid myself of something- as if I could get to the bottom of my grief by purging every last tear- as if, after 35 years, I could get to the end of feeling scared and lonely.
I sent a condolence card to her family, saying, “You may not remember me but…,” knowing that they would most likely not have a clue who I was. It had been six months since we had met each other.
A week later, I got a phone call. It was around dinner time, and I immediately assumed that it was a telemarketer. I didn’t even try to hide my irritation when I answered. “Hello! Who IS this?” I practically yelled into the phone. “Is this Erin?” a man responded, somewhat shyly. “Yup,” that’s me!” I retorted, and the shy voice said, “Erin, this is Tom. I’m Donna’s husband.”
What followed is still somewhat of a blur, but I remember that I started to cry right away, as did Tom. I couldn’t control myself. All the wasted moments, the things left unsaid, undone, the raw guilt of being a survivor when I didn’t deserve to be, it all came to a head. I listened to this poor man mourn the loss of his wife while I stood in my kitchen, wishing that a hole in the floor would open and swallow me up.
Tom told me that Donna HAD thought of me, that she wanted to call me. “She talked about you several times,” he said. “She was so happy to have found someone else, just like her. It meant a lot to her to have met you. But, more than anything, she didn’t want you to be scared by what was happening to her. The chemo didn’t work, and she just got sicker. We actually pushed up our daughter’s wedding so that she could be there. It all went too fast. Much too fast.”
We talked for a while longer. He said that it had been hard to talk to people, especially his kids, because it was still so raw. I just listened. I was really just a stranger to this man, but there was something about my having had Hodgkin’s that must have made him feel as though I would understand. And I did. Of course I did.
Donna was the first long-term survivor of Hodgkin’s I ever met. And while I never had the opportunity, the pure GIFT of getting to know her better, she lit a fuse in me. She gave me the determination to find others who might be “out there,” wondering if they are alone, wondering if there could possibly be anyone just like them.
There are. Aren’t we lucky? There are.
We have each other.