I was introduced to Terry by her screams of pain filling the hall of the hospital. Her parents had transferred her from an out-of-town hospital when someone there gave them my name as a recommendation. I had been in practice only a few years—I did not see myself as an expert on anything! But here they were huddled in the corner with abject fear on their faces, and their 19-year-old daughter alternately weeping and crying out from pain. She had stage IV Hodgkin lymphoma. Long story short, she is now a working mom with three gorgeous children and a devoted husband. Thank God and people much smarter than me for the fact that we have such effective treatments for Hodgkin disease.
Terry took her first dose of chemotherapy in the hospital. She went back to live in the apartment at a local university where she was enrolled. Her parents went back home, and I never really saw them again. Terry came to her appointments alone or had her ride wait in the waiting room. She was not particularly engaging as far as conversation. Her attitude was never offensive or confrontational, but more “give me the damn medicine and get me out of here. I have school, friends, a life—and I want to get back to it as quickly as possible.” She was never hospitalized; I don’t think she ever even called with a question. I have saved every one of her yearly Christmas cards.
Mark had colon cancer. He was also a prominent executive in town. Information was shared sotto voce on a need-to-know basis. At work he kept his continuous infusion pump in the inside pocket of his suit. Many were shocked when he recurred several years later and ultimately succumbed.
From the moment of the positive core biopsy, everyone knew Sarah had breast cancer. Her entire wardrobe and that of her entourage is decidedly pink. She has magnetic ribbons on her car; she participates in every support group, fund-raiser, and educational presentation. She makes a pink ribbon butter cookie worth every single calorie. When you go in to see her, be prepared for a packed room with loads of questions, but also hugs and cheers.
It didn’t start out so festive. Her first office visit, the group was wielding sheaves of paper from web downloads, and they had specific issues to address, by god! The air was peppered with “warrior,” “fighter,” “kick cancer’s ass.” Every person assured Sarah and me, that if anyone could do this it was her. She was Russell Crowe as the Gladiator. Unfortunately, she had a disastrous time with her first chemotherapy. She reached maximum toxicity in record speed. It did not help (I didn’t think) that her “cheerleaders” hung over her in the treatment suite that first time constantly talking, patting, glorifying her as cancer’s worst enemy. She came in for several visits before the second cycle just so we could talk quietly. I assured her that she did not have to be the poster child for anyone. She was perfectly capable of getting through treatment but she would have some side effects. Her reactions had been magnified by the pressure she felt to please others. The more we talked the better she looked and felt. It was like lifting a weight off her shoulders. Each treatment got better.
My point is that each person facing cancer has their own way of coping. They have no obligation to fit a stereotype that others may have conjured up. They are each the poster child of their own unique campaign. Every situation is different, and no one should force them to take on a role they don’t want. Support, advice, encouragement are essential to every patient as long as it is tailored to their personality and scenario.
As one man said to me “I don’t want to be defined for the rest of my life as a cancer patient or victim. I just want to get through this and be me.” For patients with chronic or recurrent cancer, it isn’t always that easy. But I suspect if you asked patients to list words describing themselves, they all have dozens of other attributes, virtues, characteristics, and quirks that come way before a cancer label.
For those who choose to share their experience with the rest of the world—carry forth! Bring your flash-mob mentality, and let’s get this party started. For others, be you quiet plodders or thoughtful introverts, you are all the epitome of how to handle this diagnosis. We will follow your lead. And if you do end up on a poster, will you sign one for me?