Tuesday, February 9, 2021

Book Review: Chasing My Cure by David Fajgenbaum

 



Chasing My Cure: A Doctor's Race to Turn Hope into Action

Author: David Fajgenbaum

Publisher: Random House Publishing Group

Date of Publication: September 10, 2019

Pages: 230


     Finding a cure for a rare disease about which little is known is challenging to even the most seasoned medical researcher.  Imagine if that researcher was an inexperienced medical student who is also suffering the ravages of this obscure disease and you have David Fajgenbaum's Chasing My Cure.  This plot line sounds like something out of an implausible, syrupy TV show, but this riveting story is true.

    Chasing My Cure begins with David's early life in Raleigh, North Carolina.  His father was a successful orthopedic surgeon and team doctor for the North Carolina State Wolfpack.  David was an excellent athlete and was a high school football star.  He went on to play quarterback at my alma mater, Georgetown University.  David's interest in medicine began with an unfortunate turn of events involving his mother.  Unfortunately she was diagnosed with a glioblastoma during his freshman year of college and died fairly quickly.  We get an early glimpse of this young man's organizational skills as he forms a support group for grieving college students, first at Georgetown but soon at many campuses nationwide.  David decided to pursue oncology to try to help patients like his mother.

   While attending medical school at the University of Pennsylvania he begins experiencing severe fatigue which he blames on his rigorous schedule.  He becomes severely ill, is admitted to the hospital and proceeds to plummet downhill from a process no one can diagnose.  He is thought to have an autoimmune disease and is treated as such but continues a downward course of multiple organ system  failure.  He is even given his last rights, a sacrament for Catholics who are felt to be close to death.  He finally responds favorably to therapies and a diagnosis of Castleman Disease is made.  This is a rare disorder where a patient's lymphatic system overproduces interleukin-6 causing an intense systemic inflammatory response.  

    The remainder of the book chronicles David's quest to find out all he can about this disease and improve treatment.  In between four near-fatal relapses he is able to complete medical school.  He then studies for an M.B.A. at the Wharton School of Business in order to better organize an international collaborative effort to study and defeat Castleman Disease.  He is aided by a very supportive family and group of colleagues.  He falls back on his experience in sports to foster teamwork and achieve goals.  This is a fascinating study of one individual's tenacity, will to live, and capacity to enlist a myriad of different doctors, medical researchers, and even patients to get a handle on this disease.  At one point he writes:

                    "Fear disintegrates, Doubt disorganizes.  Hope clears the way."

     That reminded me of the little poem by Emily Dickinson:

                                  

     This book is a tribute to one man's grit and determination.  It is also a tribute to hope, that most fragile of human emotions which is often so easily dashed.  This man has remained in remission for a number of years now, utilizing a therapy that he was able to help create.  He is an assistant professor of Medicine in Translational Medicine and Human Genetics at the University of Pennsylvania, Associate Director, Patient Impact of the Penn Orphan Disease Center, Founding Director of the Center for Cytokine Storm Treatment and Laboratory, and Co-Founder and Executive Director of the Castleman Disease Collaborative Network (CDCN).  In December of 2020 Dr. Fajgenbaum published a paper in the New England Journal of Medicine about cytokine storm in covid-19 patients.  His efforts at collaboration have paid off handsomely.  This is truly an inspiring story,.    


Wednesday, February 3, 2021

Book Review: Miracle Creek by Angie Kim


 


Miracle Creek

Author: Angie Kim

Publisher: Picador

Date of Publication: April 7, 2020

Pages: 384


     This is a marvelous novel which succeeds on many levels.  First, it is a top-notch "who-done-it".  Four patients and parents of two of those are in a sealed multi-place hyperbaric chamber when a fire erupts.  One pediatric patient and another child's parent are killed in the mishap.  This event is told in the opening of the book and the background is all revealed through the murder trial of the dead child's mother.  Did she intentionally set the fire as all of the circumstantial evidence would suggest?  Could the perpetrator be any one of a number of other characters?  The reader has suspicions, but they change multiple times as details are elicited during the trial and through flashbacks.  The plot of Mystery Creek is a variation of the "Closed Circle Mystery" genre: a limited number of suspects are presented, all with motive, opportunity, and means to have committed the crime.  The reader needs to sort through this increasingly tangled story to try to figure out what exactly happened.

     Miracle Creek is also a series of extremely well drawn character studies.  The operators of the unlicensed hyperbaric chamber are a Korean immigrant family (the Yoos): a father (the chamber operator), his wife, and their teen-aged daughter.  The author calls on her own immigrant experience to portray these folks as flawed but tremendously sympathetic characters.  The other patients include a medical doctor with infertility, a child with cerebral palsy, and two children with different degrees of autism (and their mothers).  The prosecutor and the defense attorney are central to the story also, even as minor characters. 

     This book also succeeds in painting a very realistic picture of the immigrant experience in America.  These folks come to America looking for opportunity and often find exploitation, misunderstanding, and frustration instead.  The Kims fight prejudice, racial and ethnic stereotyping, and bullying in their workplace and in school.  It is not an easy path and the author questions the risk vs. benefit ratio in deciding to abandon their native country.   

    Finally, the author does a fantastic job of describing the frustrations and difficulties of parenting a special-needs child.  The parents' whole lives are consumed with therapy appointments, treatments and hands-on control of these very needy children.  The tasks take their toll, often causing relationships to splinter.  Is all of this turmoil, self-doubt, and aggravation enough to make a mother want to kill her own child?  Would she really strike a match and intentionally cause a fatal chamber explosion?  That is the question the court is trying to answer and the book addresses so adroitly.  

     This book intrigued me from the very start.  I am a retired hyperbaric physician and have experience as a hyperbaric facility accreditation surveyor, so I am very familiar with the risks of hyperbaric therapy, especially in unlicensed, non-hospital affiliated settings.  The author certainly did her homework in that regard and understands the issues quite well.

     This is a very well written book which is entertaining as well as informative.   It is very deserving of the Edgar Award it was awarded in April of 2020 as the Best First Mystery Novel.