I remember when I was quite a bit younger, seeing a book about dying at the top of a stack of books on a sick relative's table. I groaned silently at the time, "Who needs a book about death?"
Now, as a person with metastatic breast cancer, I don't gravitate toward books about cancer but I am not afraid of them either. When they are thoughtful and careful, they can be hard for me to resist. Not surprisingly, since the author is both a psychiatrist and a fellow mom with metastatic breast cancer, Uzma Yunus's book, Left Boob Gone Rogue, is one that resonates since it balances the pain of this diagnosis with the knowledge that life is now.
I first read Dr. Yunus's online blog, which shares the title of her book, a few months into my diagnosis. She and I didn't have much in common, other than a cancer diagnosis, yet her outlook supported me even when the topic was sad and it seemed as though hope was hard to come by.
I had been hearing that a book was in the works and was thrilled when it made an appearance during the first week of November. Inside, there is much to think about. Early in her treatment, she had a mastectomy - something I did not have - and a really touching part of the book is devoted to her experience with that and how it has impacted her life.
Perhaps unsurprisingly, given her medical specialty, Dr. Yunus addresses the difficulties that so many cancer survivors, regardless of stage, have with post-traumatic stress. As she rightly points out, we must forever return to the site, and even to the very people, associated with the original trauma. The lack of acknowledgement in the oncologist's office for this mental and emotional pain can be difficult. How much better it would be if every oncologist and hospital followed guidelines that required more than just noting our answer to a sometimes-perfunctory "How are you doing?" Regularly scheduled mental health visits, from the start and continuing every so often unless the patient requests more or less, would be a relief for those of us who tire of asking for referrals or searching out palliative help. When you are focused on how to live with the side effects of ongoing treatment, it is all too often the psychiatric issues that go unaddressed.
The topic of Left Boob Gone Rogue is serious and heart-wrenching, and although some of it made me laugh in recognition of my own struggles (for instance, how to fake eyelashes, how to get through the unpleasantness of an MRI, and a list of thoughts about quitting treatment and side effects), the author's openness is notable.
I was particularly touched by Chapters 31 and 32, where she talks first about her feelings about "failing" to beat Stage III cancer. Like so many of us, Dr. Yunus was told that if anyone could beat it, she could. I remember with unusual vividness the first time a friend insisted my stubbornness would get me past cancer. I know these words are meant to reassure, but while they may give confidence in the moment and certainly help the speaker feel he is doing the right thing by instilling positivity, they can end up hurting when life doesn't go as planned. Like so much with cancer language, the wrong words can make the patient feel like a failure, like they didn't fight hard enough, and even when you know better - as Dr. Yunus certainly would have - they still linger in our minds.
Chapter 32 is a "Letter to Oncology Clinic Trainee", which captures the feeling of being unheard and unrecognized as a person when in the oncologist's office. She writes, "I have lost control of my life to cancer and the fact that you are trying to exert authority over me, merely aligns you with my cancer instead of with me, the patient … Your manner indicates you consider me a chart, a number, a diagnosis, yet another one at the cancer center. But I am a whole universe for me and those who love me." I am sure I am not alone when I say these very thoughts could have come from my own heart.
There are many beautiful books about living and dying with cancer. I'm thrilled for this woman with metastatic cancer that hers is one of them.