CHAPTER I: Call Me Doctor
There are no shortcuts in cancer. Despite hundreds of books, online resources, family and friends all too willing to suggest everything from best doctors to super diets, there is only one way to get through it and that is, to get through it. And the only person who can do it is you. Don't get me wrong--it would be immeasurably harder without the support of our spouses and friends, good wishes, prayers, cards and our kids' smiles. Still, if the cancer decides to choose your body as his residence for a year or several years, you will be the one taking the trip through the medical treatment jungle.
The road from a cancer virgin to an experienced cancer patient is a treacherous one. It doesn't matter if you are familiar with medicine. It doesn't matter if you know oncology. You might even be a doctor. Inconsequential. The world looks completely different when you happen to be the patient. Once you've walked in those shoes though—perhaps only when you've walked in those shoes—can you understand fellow cancer patients and help them round a corner or two.
“People seek second, third, fourth opinions in their race against time. Just as importantly though, what they seek is hope. ”
My journey was no different. I was not immune to the ups and downs everyone else goes through, as much as I wanted to deny it. But after the second, fourth, seventh round with the illness, I earned most of the stripes, which others seemed to value. A number of Deeds involved medical research—not just for cancer, but other conditions (some of which I'd never heard before).
Whether my job was to research new treatments, clinical trials, or to help advocate for access or insurance coverage, I realized something very important: it isn't always about which specific treatment or medical center is on the recommendations page—as long as there are options on that page. People seek second, third, fourth opinions in their race against time (and frequently find a better approach that way, myself included). Just as importantly though, what they seek is hope.
Story: Sonata For a Father (fragment)
Deed: Research cancer treatments and share insurance appeal strategy
Recipient: Olga D., Delaware, USA
They were sitting across from us in 4 West of the Abramson Cancer Center, having an animated discussion in semi-hushed voices. She was mostly the one talking to be precise, leaning gently towards a 50-something man with thinning dark hair, pale complexion, and a cantankerous frown. She was trying to convince him of something important, vital, maybe even urgent, but every time she whispered a new sentence, his eyebrows formed a ‘v’, shoulders shrugged, and he seemed to get more annoyed.
““You are forced to fight as if you were healthy to earn the right to be ill.””
Moments later, I realized they were speaking Russian. I’m not sure why, but I tend to be more outgoing in Russian than in English—or even my native Polish for that matter. Soon my husband and I were sitting next to the couple, chatting away like old friends. We learned they were Ukrainian. Vasyl was a mathematician from Mariupol, Olga—a scientist from Kherson (and I later found out, also a talented artist); they both worked for the area’s two large universities. He was a cancer patient. Olga was his wife.
Despite the circumstances of our meeting, the conversation was not all about illness. Within minutes, Vasyl told us about his young daughter, Anna, who was studying piano at the Royal Academy of Music in London. As he was proudly recounting her many accomplishments, his thunderous expression gradually gave way to positive radiance, deep internal harmony. He was no longer a cancer patient; he was a Proud Daddy.
A few days later, I sent Olga a list of what I thought could be some potential treatments. His doctor agreed, but two therapies were immediately denied by his insurance company. Access to costly drugs or procedures is frequently blocked to save money, often at the expense of patient's health. Can something be done to reverse these decisions? Yes, but it takes a lot of effort, time, and iron will. Basically, you are forced to fight as if you were healthy to earn the right to be ill.
Vasyl waited. In a few weeks, Olga wrote that his newest treatment had just been approved. She sounded hopeful. Now they were just waiting for his hemoglobin and other blood markers to stabilize.
He passed away less than a month later, one day before his beloved daughter Anna came for a visit from London. “He probably didn’t want her to see him like that,” Olga said.
Anna (Click to listen)
I didn’t think I would hear from her again, but six months later, I got a note: Anna is in town from Europe, would I like to come her concert. Would I like to? I’d love to come.
Applause.
A tall, beautiful young woman in a long black dress with contrasting red accents walked into the concert hall, faced the audience, and made an elegant bow. She took her seat with a smooth, well-practiced fluid motion. Her thoughtful eyes focused on something just below the open cover of the Steinway grand.
From the first few chords of Bach’s Prelude and Fugue 16 in G minor, she invited the audience into an intimate, beautiful dialogue between her and the keyboard. In fact, I’m not even sure it can be called a dialogue; she was so completely unified with the instrument, they could have been made of the same material. Perhaps she talked to it in some secret language, which only she and the piano could understand? I was not certain whether Anna played the piano, or whether it was the piano that played her.
In her young, beautiful face, I saw both the warmth of her mother, and her dad’s determination.
I knew why Vasyl was the Proud Daddy when he spoke of Anna. I knew he was still present through the beautiful music made by his little girl.