Shortly after Ruth Levine was diagnosed with Stage IV Colon Cancer, she went to war. Cancer was the enemy and cure was her goal. Her book, Cancer Warrior: Where the Mind Goes, is the story of her fight, battle by battle against an aggressive and advanced cancer. She shares with us the details of her diagnostic workup, treatment options and decisions, chemotherapy, radiation, surgery, and recovery. Through her words, we feel her pain, despair, anxiety, hope, and most of all her determination to win the most important battle of her life. It is a remarkable story.
It starts in the fall of 2005, when Levine, then 50, develops annoying gastrointestinal symptoms while studying for the Occupational Therapy Certification exam—the culmination of five years of working toward her dream of becoming an OT. Shortly after, a visit to her primary care doctor and her gynecologist, she is inducted into what she calls the “cancer web”. Life as she knew it came to a screeching halt, replaced by one that revolves around the world of cancer diagnosis and cancer treatment.
After receiving the definitive diagnosis over the phone, “Your rectal tumor is malignant and it is a very aggressive form of cancer,” she is overwhelmed by anxiety. Her husband suggests she try Reiki, a Japanese technique for stress reduction and relaxation that also promotes healing. She does and her relationship with Reiki and Paulette, her Reiki guide, becomes a critical element in her fight against cancer, as does daily prayer. She comes to believe that God’s plan for her includes learning from her battle against cancer.
The battle plan
But Levine doesn’t limit her battle plan to faith. She also joins a gym and begins to work out under the watchful eye of Bob, her trainer. She eventually works her way up to 60 grueling minutes a day on the elliptical. She becomes fanatical about being in top shape before her upcoming major surgery. (If you have ever panted your way through the first 15 minutes on this exercise machine, you can appreciate what an accomplishment it is to pound away for an hour.) She consults nutritionists and, after rejecting a macrobiotic approach, chooses a diet that is balanced but enriched with supplements.
Levine carefully cultivates a positive outlook, ignoring information that suggests anything less than complete cure. At one point, she tells a friend who was wailing over the phone, “Stop it! I am through with that!” She refuses to join an ostomy support group as she is determined not to have her ileostomy be a defining aspect of her life. She spends hours each day reading jokes on the internet to boost her endorphins to help fight her cancer.
She consults multiple specialists, reads voraciously, and is not afraid to reject the advice of one doctor in favor of another. For example, when one of her oncologists says she doesn’t need another round of chemotherapy after surgery because “there have been no studies done on the effectiveness of follow-up chemo on people who have had stage four colorectal cancer,” she rejects this advice because it didn’t sound like a good rationale. She chooses instead to follow the advice of another of her doctors who explains that there have only been “about 2,000 of you in the country, so of course, no studies have been done….you had seven [positive] lymph nodes. There could still be some cancer cells [in you].”
What it feels like to be a cancer patient
If the only lessons in this book were related to Levine’s holistic approach to cure, it would still be a book that people with cancer will want to read. But it is so much more because Levine teaches us what it feels like to be a cancer patient (although she despises the word patient because it makes her feel enfeebled and powerless). At one point, when asked by a hospital receptionist, “Are you a patient?” she retorts, “I am not a patient! Don’t call me that!” When asked what she was if not a patient, she replies, “I’m a prisoner of war.”
She notices every aspect of her physicians’ interactions with her, including the use of certain words. For example, she describes her dismay when one of her doctors keeps telling her that she is beautiful when what she wants to hear is that she is wonderful and doing great. She isn’t shy. She lets her doctors know the impact of their words and actions on her. She is also terrific at describing the physical pain she experienced post-op and later when she develops a bowel obstruction.
Here is how she describes when one of the young doctors in training on her surgical team comes to remove the J pouch draining her surgical wounds:
“Have you ever removed a J pouch before?” I asked her. I didn’t want any novices futzing around with me. “Several times,” she answered. On a scale of one to ten, I asked, “How much will it hurt?” “Oh, about a three.” Huh. They always understate your pain. “Then I take that to be a nine,” I concluded. She grasped the plastic tubing of the pouch close to my abdomen and gave a firm yank. God! It felt like she shoved a lit sparkler into me. “Are you all right?” she asked. I was panting from the pain. Nodding, I gasped. “I was right. It was a nine.”
One of the funniest parts of the book is when she describes becoming exasperated waiting for someone to wheel her back to her hospital room after she has had a CT scan. She finally decides to wheel herself back and is in the process of doing so when she becomes aware someone is following her. Instead of waiting for him, she starts wheeling the chair even faster, determined to get back to her room on her own. She enjoys seeing that the race to the elevators has left the radiology tech chasing her breathless and sweaty. She confides that he wouldn’t have caught her if she had been able to walk.
She started exercising within days of her 10-hour surgery to remove her large rectal, pelvic, and liver masses. Dressing in her street clothes, she would attach her CD player to the IV pole and walk the hospital corridors for hours. During one of her hospital stays, disgusted by the bad coffee, goes to a nearby Dunkin Donuts to buy “real coffee”. She is certainly not your typical patient and I suspect she earned the title of “Difficult Patient” from many of the hospitals’ staff.
This book reminded me of my days as an emergency physician with one major difference—through Levine’s descriptions of her experience of the care she received—I got a sense of how my reactions, demeanor, and words must have impacted (positively and negatively) the patients I took care of. And, this is what I think the real power of this book is and why I think that medical schools and residencies should make this little gem of a book required reading together with Klitzman’s When Doctors Become Patients and Groopman’s How Doctors Think. (In fact, it wouldn’t hurt if practicing docs pick it up and read it every once in a while as well.)
We talk a lot these days about patient-centered care. But since many of us have not yet been “patients,” we don’t know what it really feels like to be on the other end of the stethoscope or on the receiving end of life-threatening news. Cancer Warrior clearly and vividly provides that perspective and, I believe, it is for that contribution that this book will become known and, hopefully, widely read by the medical community and well beyond.