This is a guest blog post by John Leifer from After You Hear It’s Cancer. Leifer has spent more than 30 years in the health care industry as a senior health care executive, consultant, academician and writer.
As the spouse of a radiation oncologist, our dinner table conversations often focus on the trials and tribulations of my wife’s patients. Somehow it seems cathartic for Lori to share her patients’ angst – like a long sigh that carries away the collective stress of watching people struggle with their journeys through cancer. Yet, throughout these discussions, rarely did we discuss the possibility that we, too, might be forced to embark on such a journey. Then came Easter 2013, a day that changed our lives.
Easter is a particular sacred and treasured day for my wife who embraces the message that “the worst thing is not the last thing,” and has tremendous faith in the resurrection. That night, three years ago, I had slipped into bed while Lori took a quick shower. Half asleep by the time she joined me, I was suddenly jolted awake by her quiet sobbing. My normally stoic wife was in distress, and I had no clue as to why.
“I found a two-centimeter lesion in my breast. It’s cancer,” Lori said as though reading a pathology report.
I prayed she was wrong.
We awoke numb the next morning, as if fighting off the remnants of a bad dream. But it was no dream, and Lori soon sprang into action — lining up the requisite diagnostic tests to determine our fateful next steps.
After going through a battery of imaging studies, followed by a biopsy, Lori was diagnosed with early-stage breast cancer – and given the option of breast-conserving surgery (a lumpectomy) followed by radiation or a mastectomy.
Though Lori knew that both treatments provided the same statistical probability of cure, she nonetheless struggled with the decision. I realized, then, that if a physician with 25 years of experience treating cancer patients struggled to make the right treatment decision, how extraordinarily difficult it must be for laypeople.
Lori’s lumpectomy appeared to go exactly as planned. After a few hours, the surgeon came out to inform me that he was confident that he’d “gotten it all,” but was careful to advise that cautious optimism was needed until the pathology reports were back. Tears brimmed in my eyes as I heard the news.
The pathologist was shocked when Lori’s tissue samples arrived in her laboratory, for she and Lori were close colleagues. Not wanting Lori to endure the anxiety-ridden wait for results, she worked late into the day to process the slides. Unfortunately, the news was not good.
Not only were the margins (the point at which the surgeon has stopped excising tissue) not clear of tumor cells, but there appeared to be a second type of cancer in Lori’s breast. Lori would need a mastectomy; the only choice was whether it would be bilateral.
Our journey was suddenly more complex, yet Lori came to a decision with relative speed. Because there was lobular cancer in her breast, which is often opaque to diagnostic imaging tests, she did not want to carry the burden of anxiety wondering if another cancer would appear in her other breast.
Recovery from her bilateral mastectomies and reconstruction was a slow and painful process. We were incredibly grateful that her sister, Janet, a nurse at Duke, flew in to aid with her post-surgical care. It would take months, but eventually my energetic, beautiful wife would re-emerge.
There was one, powerful change, however. Though always compassionate, Lori had acquired a new-found empathy for her patients. The arduous nature of the journey was no longer a concept in her mind…it was something she had embarked upon and was surviving.
Our shared journey was a major impetus for writing After You Hear It’s Cancer: A Guide to Surviving the Difficult Journey Ahead. I wanted to do my part to help make this extraordinarily difficult time in patients’ lives, and the lives of their loved ones, a bit easier. Lori served as my clinical consultant on the book.
Our journey does not stop with the book. Today, we are exploring additional ways to help patients and their loved ones understand the twists and turns of the difficult journey through cancer, and how to make truly informed and collaborative decisions with their physicians that incorporate their personal values.
There are no short-cuts on the journey through cancer, but there are ways to make it more tolerable. Our commitment is to help identify them, and share them with those that must follow this life-changing and often unpredictable path.
About the author: John Leifer, MAPP, has spent more than 30 years in the health care industry as a senior health care executive, consultant, academician and writer. An outspoken advocate for patients’ rights, he has published widely on the need for patients to receive appropriate, safe, effective care.
Lori Lindstrom Leifer, M.D., is a cancer survivor and Assistant Clinical Professor of Radiation at Oncology at the University of Kansas School of Medicine.
For more information, visit: www.afteryouhearitscancer.com or e-mail firstname.lastname@example.org