Last week, I was digging through a stack of aging, faded newspaper articles I wrote as a free-lancer back in the late 1990’s, hoping to find a particular story I thought might be a good fit for the blog. Suddenly, I landed on a clipping which I didn’t write. It had been snail-mailed to me back in 2010. It was about an old high school friend named Lissa McKinley.
Lissa was cool. She was down-to-earth, funny as hell and always fun to be around. And she was smart; way smarter than me. She studied Epidemiology at The University of North Carolina at Chapel Hill, becoming a physician at Cleveland’s MetroHealth as well as an assistant professor and dean of students at Cleveland’s Case Western Reserve University School of Medicine. She and I were part of a larger group of friends at a K-12, all-girl preparatory school (I arrived in 7th grade.)
I picked up the article and read it for the first time in years. In September 2010, a columnist named Regina Brett interviewed Lissa for the Cleveland Plain Dealer. Why? Because Lissa was a doctor and an educator dedicated to improving cancer patient care…as she was living with cancer. Here is some of that interview:
People who live with metastatic cancer live with a different kind of uncertainty. It’s a strange place. For Dr. Lissa McKinley, cancer is a chronic disease.
“You aren’t dead. You aren’t dying today,” she said. “I’m living with a chronic illness. It gets better and worse.”
When she was 35, Lissa was diagnosed with Stage II breast cancer back in 1996 when she was an internist. She did chemo, radiation, reconstruction and Tamoxifen. She lived 10 years cancer-free, but lived with the fear that haunts most cancer survivors:
Will it return? When? The longer you go cancer-free, the more you think you’re home free.
Then one night she rolled over and cracked a rib. Bone cancer. Now she lives with a different kind of uncertainty.
Lissa works as an assistant dean of students at Case Western Reserve University School of Medicine where she is an assistant professor of medicine…she has made it her career to heal others. She cannot heal herself, but cancer is making her a better healer. As both a patient and a doctor, she teaches students how to be better doctors.
“You learn so much as a patient that you’re never taught as a doctor,” she said. One time she was removing fluid from the swollen knee of a sick man. “He told me, ‘I’m dying but my life the last six months has been richer than anything I’ve ever had.’ Who do you charge?” she laughed.
She won’t go so far as to call cancer a gift, but she’ll gladly call it a teacher. Before she was a patient, she was one of those doctors who didn’t know how to talk to patients. Now she teaches students to listen to their patients’ fears, their struggles, their stories – not just treat their diseases. Her students interview cancer survivors to learn that life can be rich even if you’re dying.
“I want them to be good at helping someone die or helping someone live,” she said.
Lissa makes them do a lot of writing about their experience with patients. They learn to listen, value and remember it.
“You put stories in your white pocket and pull them out” she tells them…
The cancer has progressed. She had a bad scan in July and is back in chemo. Most days, she has a high quality of life and can do most anything.
“How do you continue to have hope?” she asked. “You have to think everyday about how you are going to make this a good day and what’s important. You’ve got to live where you are.”
And Lissa did live where she was with her illness and made well over 1000 additional good days before she died at age 53 in November 2013.
Back in high school, we certainly shared some fun memories. I remember jumping around her room singing “Bohemian Rhapsody” into her hairbrush, traveling with a school group (16 of us) to study biology while exploring the Smoky Mountains and the Keys and visiting her during her vacation with her family on the East Coast one summer. I fondly remember attending each other’s weddings.
After that, children and work and distance (she stayed in Cleveland and I was in Chicago) made our communication less frequent, although we had one great reunion in Canada with many of those same high school friends and our young families. Slowly, I became less privy to her medical challenges.
Rereading her story brought a mix of feelings from shame that I wasn’t in contact more to awe that Lissa made her life’s work be about improving the doctor-patient relationship. In part, her obituary shares:
Her long, personal engagement with cancer informed her evolving sense of empathy in medicine and encouraged her “to teach and model humanism in patient care,” particularly of cancer patients. She spoke nationally and internationally on these subjects, helped to create a curriculum reflecting humanism at Case Western Reserve School of Medicine as well as at The Gathering Place (a local place of support for anyone with cancer.)
In 2006, she started a blog, “Saving My Life: One Poem at a Time.” She loved poetry. In each post, she would first chronicle any medical updates (and coming from a doctor, they were admiringly specific) her mood, her gratitude, personal thoughts, family stories and then conclude with a poem(s) which usually connected to her thoughts for that day.
I began to read through much of her blog. I felt close to her again forgetting about the embarrassing gap in time. Friendship is like that. She was more up than down (she must have written “how lucky am I?” at least 50 times) as she understood what she did have – a lot of love from her husband and children and friends, a rewarding career before needing to retire, and an enriched life of travel and art and poetry, but do know that she railed too when she saw the system failing.
She wrote one time about not getting through to the cancer center when she had been given a specific phone number to do so:
“I know this system inside and out, and it is broken. Good people try really hard to put band-aids over the cracks, but in general, the system does not work so well for the patient. What would the world be like if all patients in need of palliative care were given someone’s beeper number to call instead? In all my years as a cancer patient, the only place I really have had repeated trouble is accessing the system. Isn’t that silly? This is the place most people get caught, especially those who don’t understand the crazy system. All those fabulous nurses and doctors and others generally want to help more than anything. Problem is, they don’t know you are calling and calling and calling, or banging your ouchy little head against a wall just trying to ask if you might increase this or change that.”
Another time, she was furious with the inhumanity of an assistant always yelling “MCKINLEY” when it was her turn for checking in for an appointment. Here’s her funny, truthful description:
“I wish I had the cajones to walk up to the woman who has just screamed “MCKINLEY”, and tell her that I will not move from my spot in front of her face until she announces me across the waiting room as GODDESS OF GOODNESS AND LIGHT!” Ah, it makes me giggle just thinking about it. She has no idea what her words do. She needs to know.” (Her preference was to be called “Lissa”, or “Lissa McKinley” or “Dr. McKinley” and did, in fact, tell her that.)
I believe that the curriculum she developed from her own experiences has rooted in the next generation of doctors. Her life with cancer has ended up impacting thousands as the new doctors move on and spread that compassion and responsibility to have a deeper understanding of each patient outward. It’s possible that a sister or father or child of a reader here today has benefited from her teachings. I love that and am so impressed by my old friend.
And in a strange twist, I rediscovered Lissa’s story just a few days ago as I am preparing for my one-year anniversary this week of my last chemo treatment for stage 3 uterine cancer. I’ll officially be “cancer-free” for one year. I would give anything to converse with her about cancer and blogging, her strength and really, tell her how much she rocked life, and her own death too in knowing when to stop treatment.
And I would have also brought up one particular entry with her. While reading, I learned that she had been interested in getting a tattoo.
“I have even started thinking again about that tattoo I have always kind of wanted. My kids cringe when the T word comes up, but I am going to do it. I think a Celtic something is destined to appear somewhere on my body…..we shall just have to wait and see.” (She had been reading a lot of Yeats’ poetry and Celtic Mythology and was planning a trip to Ireland.) Sadly, when she asked her oncologist about getting one, the answer was no. In Lissa’s words, “Unfortunately, I waited too long.”
Here’s the thing. I have been thinking about getting a tattoo for a few years now. Before it was about bucking the system, but now it’s about…something else. I’ve thought about it and my choice would be a small feather. Maybe two in the act of floating downwards. The inspiration comes (surprisingly) from the movie Forrest Gump. Remember the floating feather in the opening and closing credits accompanied by that beautiful soundtrack? The random floating and where it could land was supposed to speak to us about Gump’s life, but it spoke to me too. And I don’t ever want to say that I waited too long. I like to believe that Lissa would tell me “Do it!”
And she was reflective regarding that unpredictability of life.
“Someone was talking the other day about how their life hadn’t ended up exactly as they had planned. I ask you, do our lives ever end up the way we “plan”? Is that even what we want? I can’t imagine that it is. I’m afraid that would wash out so many possibilities, but I’ll think about that. For me right now, life is only about being in the possible, and it seems a freeing place of “soul-swans” and stillness and reading and writing and being.”