Off Our Chests: No Secrets Left Behind

By CHADI NABHAN

She was a successful corporate lawyer turned professional volunteer and a housewife.

He was a charismatic, successful, and world-renowned researcher in gastrointestinal oncology. He was jealous of all breast cancer research funding and had declared that disease his nemesis.

They were married; life was becoming a routine, and borderline predictable. Both appeared to have lost some appreciation of each other and their sacrifices.

Then, she saw a lump, and was diagnosed with breast cancer. Not any breast cancer, but triple negative breast cancer. The kind that is aggressive and potentially lethal. The year was 2006, and their lives was about to change forever.

This is the story of Liza and John Marshall, who decided after 15 years of Liza’s diagnosis to disclose all, get all their secrets out in the open, and “off their chests”. They did so by writing a book that I read cover to cover and could not put down.

The authors decided to not only share their cancer journey as a patient and a caregiver, but also to share much of their personal and intimate details. They wanted us to know who they are as people, beyond patient and oncologist husband. We got to know how they met, when they met, and how they fell in love from the first sight. We got to know some corky personal details, and as a reader, I felt that I was part of their household. John shares how losing his mother at a young age to lymphoma affected him personally and professionally. We learn that they attend church every Sunday. Both are people of faith and they let us know how their faith helped them during these challenging times. Losing a dear friend to breast cancer took a toll and certainly made them less certain whether Liza’s fate would be any different.

They alternate writing chapters so that we get to know various events and stories from their sometimes-opposing points of view. We get to understand how a cancer diagnosis affects a caregiver, who happens to be a busy academic oncologist with little time to spare in between clinical practice and traveling for his work. At some point, John expresses resentment that all of the attention was being diverted towards his wife -the patient- and that he was left alone with few people caring how he felt and what struggles he was going through.

Liza recounts her diagnosis, testing, chemotherapy, side effects, seeing a psychiatrist, and the impact all of this had on her and her family. She takes us through her wig selection and how she makes light of a very emotional process. We learn how this detail affects her children and their playdates. We learn about managing side effects and how there is discrepancy between what’s important to a patient and what a physician deems important. She even recounts how John did terribly when he injected her arm with Neulasta – a growth factor shot – causing her pain. John admits that he had some sense of arrogance when he thought he could simply insert a needle in his wife’s arm, but soon thereafter, gets lectured by Liza’s chemotherapy infusion nurse about best injection techniques. Both authors briefly discuss the cost of cancer care when Liza needs Emend, an expensive anti- nausea medication and John tries to advise against it due to cost, telling his wife that she should tolerate a bit of nausea. Liza doesn’t appreciate his callous approach to a disturbing symptom; she needs her nausea alleviated and wants her medicine now. This encounter solidified what I had always believed; when a patient is in distress and is getting treatment for a life-threatening cancer, cost of care to the system and society is of least concern.

Throughout the book, the authors share some of the pearls and challenges in clinical medicine and oncology. They both express their ambivalence about “shared-decision making”. Liza wonders how can she make vital decisions with so much asymmetry in information. John admits that he makes decisions on behalf of his patients all the time, once he understands their values and goals of care. I share John’s sentiment. My patient can decide between two chemotherapy regimens based on the side effect profile, but ultimately, I will have to make the decision if chemotherapy is indicated.

Liza and John explain to us the importance of “second opinions”; we travel with them to their second opinion physician office as Liza artfully describes the differences between the chemotherapy suite at Georgetown and that of a private practice office. While she decides ultimately to have her care at Georgetown because it was where John works, we infer from both the importance of seeking other opinions when diagnosed with a life-threatening illness.

We learn how challenging it is to decide on clinical trials. Liza expresses her dissatisfaction with how trial consents are written, and I, once again, share her concerns. Liza is not shy expressing her frustration when her team of doctors gathered in her exam room discussing her case jointly, but leaving her behind as if she wasn’t there. I suspect that many patients can relate to such an encounter.

John bravely addresses the Direct-to-Consumer (DTC) advertising and proclaims that these DTCs should not be allowed, but yet he did participate in some of these DTCs on behalf of his own employer. He made me feel that he wasn’t too happy about being in these ads. It made me worry whether this disclosure may get him in trouble. I hope not, but knowing John, he won’t have a problem. He would charm his way out of any troublesome encounter.

While Liza is able to capture our empathy and love, John manages to make us feel sorry for him as he describes his busy schedule and how he needs to juggle many balls in order to be present for his wife. He clearly had no idea how to pay bills, switch on the TV, or even handle a remote control. Liza takes him through a household management tutorial just in case she can no longer perform these household tasks, and John is left alone. The authors made me laugh and cry at the same time as I pictured what was going on.

Both authors have a sense of humor, and I could sense the human nature of both of their personalities. John admits that it was “karma” that his wife got diagnosed with the cancer he spent his life attacking. He says, “This was retribution for my long disparagement of the breast cancer machinery”. Liza on the other hand confesses that John is no George Clooney, but he was more accessible.

I smiled, I laughed, I teared, and I cried. Very few books do this to you, but John and Liza were able to take me through all kinds of emotions as I pictured myself consoling Liza, being with her in the chemo suite, trying to calm John down as he was attacking breast cancer research, and sitting with them during their first Christmas after Liza’s diagnosis as John gives his wife an embrace assuring her that she will be okay.

It’s not easy to share your personal story with the world. It’s actually quite difficult and brave. John knows that many patients and colleagues will read this book; but he didn’t care. He needed to get everything off his chest. Seeing John’s smile and charming personality every so often made me take a second look as I read about his burnout, occasional anger, and evolving apathy. It’s not easy to share this with the world. Doctors should be strong and resilient, not weak and going through midlife crises. But the honesty, the painful realities, the ability to explain what led to what, and how this couple emerged winners after all is what makes this book ever so special.

John and Liza got it all off their chest. Their honesty was palpable and raw. There was nothing they were unwilling to share with the universe. Part of me sensed that this was a way for them to get closer to each other and connect. Maybe it was a cathartic experience, as they got to know each other more through reading each other’s writing. I cheered for them to connect like never before and they did.

Chadi Nabhan (@chadinabhanis a hematologist and oncologist in Chicago whose interests include lymphomas, healthcare delivery, strategy, and business of healthcare.

Source link