Thursday, July 2, 2020

“When Blood Breaks Down”: It Can Break Your Heart

By CHADI NABHAN, MD, MBA, FACP

The goal for me and for my clinical and research colleagues is to put ourselves out of a job as quickly as possible”. This is how Mikkael Sekeres ends his book “When Blood Breaks Down” based on true stories of patients with leukemia. I share Mikkael’s sentiments and have always stated that I’d be happy if I am out of a job caring for patients with cancer. To his and my disappointment, this wish is unlikely to ever come true, especially when dealing with leukemia.

With almost 15 years of experience, Sekeres possesses a wealth of knowledge and patient stories making him the ultimate storyteller taking us along an emotional journey that spanned hospital rooms, outpatient clinics, and even his car. We get to know Mikkael the person and the doctor and immediately recognize how difficult it is to separate these two from each other. With hundreds of patients he has cared for, Mikkael could choose which stories to share. He decides on 3 patients, each with a unique type of leukemia and a set of circumstances that makes their story distinct. While I don’t know for certain, his selection likely reflected his ultimate goal of writing this book. It was about sharing life lessons he had learned from his patients–lessons that we could similarly learn—but it was also about giving us a glimpse of history in medicine and the progress that has been made in treating leukemia.

We get to know the three main characters of the book very well. David is an older man with acute myeloid leukemia (AML), Joan is surgical nurse who suddenly finds herself diagnosed with acute promyelocytic leukemia (APL), and Mrs Badway is a pregnant woman who was in her 2nd trimester when she was diagnosed with chronic myeloid leukemia (CML). While learning about their illnesses and family dynamics, Sekeres educates us about the various types of leukemia and enlightens his readers about so much history that I found fascinating. I did not know that the Jamshidi needle that I have used on so many patients to aspirate their bone marrows was invented by an Iranian scientist. Maybe I should have known, but I didn’t, that FISH was developed at Yale in 1980 and the first description of leukemia has been attributed to a French surgical anatomist, Dr. Alfred Velpeau in 1827. Somehow, I always thought that Janet Rowley discovered the Philadelphia chromosome, but Sekeres corrects me when he pictured Peter Nowell and David Hungerford who discovered that chromosome in 1961. As a reader, you might be more drawn to the actual patient stories, but the geek in me enjoyed the history lessons, especially the ones I was unaware of. Sekeres inserts these pearls effortlessly and with perfect timing. He does that so seamlessly and naturally that you learn without realizing you are being taught.

Sekeres’s abilities as a teacher become even more visible when he describes his interactions with the house staff and fellows on inpatient and clinic rounds. More specifically, the relationship between Sekeres and his fellow mentee Rachel is admirable. I grew fond of Rachel; she is an enthusiastic, hard-working, intelligent hematology oncology fellow that I would have loved to have on my service, but also the kind of person I would enjoy having a cup of coffee with to discuss life lessons. The way Rachel became aggravated with David’s son, Eric, who insisted on his dad getting chemotherapy reminded me of my younger self when I could not understand why families pushed for futile therapies. These days, however, I see myself more in Sekeres as he maturely handled the situation and taught Rachel the importance of understanding family dynamics.

Sekeres uses David’s story to discuss the difficulty of decision-making when older patients are faced with a disease that is rarely curable, especially when treatment is highly toxic and deadly. There are some interesting tutorials throughout David’s story; for instance, delaying therapy for AML patients over 60 years of age might not be detrimental. On the other hand, I was surprised to learn much later in the book that David has an IDH mutation and wondered why the author didn’t introduce genomic profiling early on. In fact, as I was getting to know David, I wondered what his genomic profile was and why it wasn’t discussed with his family at the time of diagnosis. In discussing treatment choices, Sekeres keeps us honest. He admits that physicians and patients oftentimes exaggerate the benefits of therapy and downplay the toxicity. It’s true and we all have seen it in our clinics; I applaud the author for bluntly telling us as such. In the end, the way David musters up the amazing courage to watch a long-awaited baseball game before he dies makes us wonder, but as if Sekeres read our minds, he asks the same question and confesses, “I have seen patients, even those moribund and comatose, linger for days until a daughter or son from overseas return”. We will never know why. We tear up as David loses his life to AML, but find serenity that even Eric, his hot-headed son, becomes peaceful and gives a thumbs up to Rachel.

Through Joan’s story, Sekeres teaches us about APL. Interestingly and contrary to what I had expected, Joan ended up having a relapsed disease. Patients with APL can often be cured with chemotherapy, but Joan wasn’t so lucky. I guess Mikkael was trying to tell his readers that even with a disease that can be cured in more than 75% of patients, we can see relapses, so get ready not to overpromise. We soon start learning about bone marrow transplantation and its various types and potential toxicities. The process of donating marrow was front and center in Sekeres’s mind. The author did not shy away from addressing controversial issues of storing an umbilical cord and whether transfusing blood products is acceptable in patients enrolled in hospice. In a semi “Soap Opera” twist, we learn something important about Joan’s story that could affect her ability to find a matched sibling donor, but I won’t spoil the surprise; you’ll need to read the book to uncover.

Last up is Ms. Badway, who has CML, a disease that is now treated with oral imatinib or its more potent “relatives and second-generation drugs”. Sekeres takes us down memory lane, making me remember when I heard Brian Druker giving the plenary session at ASH on the STI-571 (subsequently named Gleevec or imatinib) as he described a Phase I study of that agent showing unprecedented results. Interestingly, years earlier, Drucker was asked to leave the Dana Farber Cancer institute when his research was not funded. I bet the folks at the Dana Farber regretted that decision shortly thereafter when Drucker, now a faculty at Oregon Health and Science University reported on Gleevec. Ms. Badway’s pregnancy gives another twist to her story. Should she take the drug? Are there data on administering this drug during pregnancy? What about childcare? Compliance? Cost? Ms. Badway’s story brings up too many questions, so you’ll need to read for yourself to better understand the complexity of what might appear initially as easy decisions.

Overall, When Blood Breaks Down is easy to read, enjoyable, and a page-turner, especially if you are in the medical profession and have an interest in hematologic malignancies. I did wonder however if Sekeres was too technical in describing peer-reviewed data for the general public. I thought there were too many tables, Kaplan-Meier curves, and citations of actual publications that a lay person might get distracted from the true core of the book. I also thought that Sekeres could have discussed cost of care a bit more. He dances around the topic but doesn’t delve deep into the issue and how it might affect patients, nor does he offer solutions to rising drug costs. The focus of the book is certainly not health policy, but I wanted to learn more about the major characters as they navigated their health care costs.

With all of this in mind, I found the book a great read, with a wonderful collection of patient stories. The author has an amazing ability in storytelling and has so much compassion that I wanted to meet Sekeres and his team to make rounds with them. I read the book over a weekend and could not put it down. You will likely experience the same. I was left wanting to read more from Mikkael Sekeres and can’t wait for his second book.

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



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