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

 Dear Lit Loves,

For the past week I decided to tackle my favorite genre, memoir, once again.  I selected a book by Dr. David Fajgenbaum.  It gained my interest because I had initially heard about him and this book via our local news.  Dr. Fajgenbaum writes about being a doctor and being diagnosed with a rare disorder known as Castleman's disease.  Since I have a few interesting and somewhat rare diagnoses myself, I wondered how a person in the medical realm would cope with a rare disease for which there is no cure.

Dr. Fajgenbaum chose to attend Georgetown for college where he was also the quarterback for their football team.  It was unsettling to him to begin noticing symptoms that are worrisome.  It started with weakness and fatigue which was strange because he is young and healthy.  The next worrisome symptoms included what he refers to as blood moles appearing on his skin.  Then he enters a hospital having gained 30 pounds of fluid weight while he had lost 50 pound of muscle weight.  Dr. Fajgenbaurm had already lost his mother to brain cancer and now he was facing symptoms that overwhelmingly made him feel as if was getting ready to knock on death's door.  In other words, his organs began shutting down.  He received dialysis, struggled with brain fog, and continued with numerous tests as initially doctors thought he had a form of lymphoma.  Dr. Fajgenbaum's father was an orthopedic surgeon in Raleigh so after conferring with his dad, he was moved to the hospital in North Carolina where his dad practiced.  Eventually, after receiving seven forms of carpet-bombing chemotherapy, Dr. Fajgenbaum begins to recover.  

Dr. Fajgenbaum eventually convinces his physician to complete a lymph node biopsy.  The lymph node biopsy did not show that he had a cancer like lymphoma, but a rare disease called idiopathic multicentric castleman disease.  He googles Castleman's disease while in the hospital and learns that most people only survive f short time and it involved lymph nodes that became enlarged and began producing substances that led to organ failure.  Once he survives two bouts with Castleman's disease that left him in the hospital for weeks, he decides he is going to find the guru physician who had experpience diagnosing  and treating Castleman's disease.  That led to a Dr. Van Rhee at the University of Arkansas.  Even upon seeing Dr. Van Rhee, he learns that even people who specialize in rare diseases do not have the keys to unlock and treat most rare diseases.  It's the beginning of a collaborative patient/doctor relationship with Dr. Van Rhee and eventually a physician to physician relationship.

Dr. Fajgenbaum decides to forego his medical residency to work on his MBA.  He had started along with Dr. Van Rhee an organization known as Castleman Disease Network Collaboration.  It started small with just the assistance of family and friends.  After five relapses of Castleman's disease, Dr. Fajgenbaum decides to ramp up the size of the Castleman Disease Network Collaboration to include international patients and researchers for the study of the cause and treatment of Castleman's disease.  Along with combining forces with a pharmaceutical company, Dr. Fajgenbaum truly gets to see some progress in ruling out causes of the disease while also coming up with diagnostic criteria to assist doctors with diagnosing the disease.  

Although he had yet to see his organization for Castleman's disease determine a cause for Castleman's disease, he learned through his own multiple treatment options what worked for him and what did not.  Along the way, Dr. Fajgenbaum met other patients with Castleman's disease and was able to acquire access to the lymph node specimens and labs for those patients to keep in a database and utilize in future research to assist in understanding and treating the disease.  

To me, Castleman's disease sounded a lot like the lymphoma from which I lost my dad.  I remembered the multiple chemo drugs utilized in my dad's treatment along with a stem cell transplant and monoclonal antibody treatment.  Both diseases will humble a patient in the blink of an eye because when the patient relapses, the treatments can take you almost to the brink of death.  In my father's case, he fought a rare lymphoma for twelve years before finally developing bacterial pneumonia during his last form of treatment which led to subsequent heart and lung failure.  Like Dr. Fajgenbaurm, my dad had a whole new appreciation for each day of life he was given.  And I was impressed at how down-to-earth Dr. Fajgenbaum was able to relay his experiences with each relapse of Castleman's disease.  

Rare diseases cause you to look at life differently.  My own rare disorders have given me a greater appreciation for the ability to hear, see, and be able to maintain balance physically.  I knew early on in my first rare disease occurrence that I would never be a U.S. Olympic gymnist as I can rarely maintain my balance when standing with one foot raised and the other foot on the floor.  And I quickly realized at age eighteen, doctors don't have all the answers and they are fallible as well.  Do I think researchers could have utilized my own case for more and better research involving treatments for my rare disorders?  Most definitely.  The most important lessons I learned while living with rare diseases is the necessity to locate and be seen by specialists, usually at university hospitals, that have diagnosed and treated diseases like mine.  And lastly, like Dr. Fajgenbaum, i became my own best healthcare advocate.

This book is insightful and well-written.  I highly recommend it for Castleman's disease patients and the medical community, but I can tell you that even if you are a patient diagnosed with other forms of rare disease or not, you will learn some valuable life lessons in this book.

Till my next review.

Best,

Grace  (Amy)

Review: A Time For Mercy by John Grisham

 Dear Lit Loves,

Greetings!  It's been a couple of months since I last posted a review thanks to my own health issues, the Covid pandemic, holidays, and completing final edits on a manuscript before its submission.  When I want to take a break from memoir (which is rare), I turn to fiction.  When I want to read a book that keeps me turning the pages and makes me stop to think what I would do if I were in a particular character's shoes, I turn to John Grisham.  It never hurts that Grisham generally places his book settings in the south as well.  The most recent book of his that I just finished reading is titled A Time For Mercy.  This book for me was like driving a loaded Mustang GT.  Right out of the starting gate, I've got the pedal to the metal and it's not long before I am cruising in first place while listening to AC/DC.

First, if you can't take an author who tackles big issues in a southern setting, this might not be the book for you.  If you're like me and love books set in the south that address the big issues we as a society are dealing with today then reading this book is almost like having a winning lottery ticket. (Almost), 

The book opens with lawyer Jake Brigance in Clanton, Mississippi who is called by a judge on a Sunday afternoon and handed the legal defense of a sixteen year old who everyone in Clanton appears to want dead.  Why?  Because he killed an off-duty police officer.  You then get a play by play narrative of the circumstances that led to a sixteen year old male teenager murdering a police officer who was dating his mom.  Next, we discover the police officer is not the upstanding man people think he is.  Stuart Kofer, the police officer, has more problems than he can count.  He served in the military, but was abruptly discharged.  He has been married twice and divorced twice.  He has a McDaddy drinking problem along with brutish behavior and gambling problems as well.  He has his own home and has recently invited sixteen year old Drew's mother to come with her kids and live with him.  Drew's mom, Josie, works multiple part-time jobs, has served time in prison, and lost custody of Drew and his younger sister, Kiera, twice.  

The problem is Stuart Kofer has a truly dark side and he can be brutal after an entire day and night of drinking and carousing.  He frequently returns home at night to beat Josie.  He's also berating Drew and when no one's home, Stuart Kofer rapes Drew's sister, Kiera, on multiple occasions.  He tells Kiera that if she tells her mom or anyone about it, he will be forced to kill her, her mom, and her brother.  Drew and Josie have no idea about Stuart raping Kiera.  So one night Josie is waiting for Stuart Kofer to return home at two in the morning while Drew and Kiera are upstairs behind a locked bedroom door with furniture shoved up against it.  Drew and Kiera hear commotion downstairs and then they hear Stuart Kofer ascending the stairs to the room in which they've locked themselves.  When Stuart is unable to get inside the room to reach Drew and Kiera, he goes to his bedroom and passes out cold.  

After it has been quiet long enough, Drew and Kiera venture out of a bedroom looking for their mom and wary that Stuart Kofer could be lurking somewhere around the house.  They find their mom, Josie, unconscious on the floor of the kitchen and neither one can detect that their mom is breathing.  Both kids assume Stuart has killed their mother.  While Kiera is downstairs attempting to rouse her mom, Drew goes upstairs and finds Stuart passed out in the bedroom.  He then calls 911.  Kiera is still trying to rouse her lifeless mom when she hears a gunshot.  Drew comes downstairs and Kiera asks him if he shot Stuart Kofer which Drew answers in the affirmative and then sits down on a couch and appears to descend into a catatonic state.

The Clanton, MS police arrive to Stuart Kofer's house, detect a pulse after examining Josie, and then run upstairs to find Stuart Kofer dead from a bullet discharged from his own Glock which is lying beside him.  Kiera rides with her mom as emergency personnel take her to the hospital and after informing the Clanton, MS police that Drew shot Stuart Kofer. Drew is put in handcuffs and placed in a cell in the Clanton, MS jail.  This is the case attorney Jake Brigance is given by the judge in this case, Omar Noose.

The rest of the book covers what happens to Drew as he is tried for capital murder as an adult.  His mom is taken to a hospital where she suffers from a broken jaw.  Kiera learns she is pregnant and is forced to tell her mom.  Stuart Kofer's family wants Drew to be given the death penalty.  Jake Brigance is a small town attorney who is barely making ends meet and must defend Drew on a shoestring budget along with the fact that this area of rural Mississippi is highly conservative.  

I know an author is good when I start considering from each character's perspective what I would do in a given situation.  How will Jake Brigance defend Drew Gamble?  Will he claim Insanity,?  Self-defense?  Will Kiera choose to keep the baby, have an abortion, or give the baby up for adoption? Will Josie be able to recover not just from the beating, but having no place to live and being in debt along with the duress of discovering all the trouble she has brought on herself and her children via bad decisions?  How will Drew cope sitting in a jail cell for months waiting for a trial?  Will the officers who worked with Stuart Kofer admit that they knew about his seriously problematic drinking and the two previous 911 calls Josie made regarding abuse by Stuart Kofer?  What will the Kofer family do to see justice served?  And what will the Kofer family do if or when they discover Kiera was raped by Stuart and is now carrying his baby?  And just as importantly, what would you do if you were selected as a juror in the trial of Drew Gamble vs. the state of Mississippi whereby the charge is capital murder?

I'm not giving away what anyone does or what happens as the story continues to unfold.  Let's just say that this book will make you think about domestic violence, extreme alcoholism, race relations, murder committed by a minor, chaotic childhoods, police loyalty, and how the choices people make can lead to dire circumstances not just for themselves but others as well.  

I absolutely loved the book.  I highly recommend it.  And I can't wait till  I find another book by John Grisham and have the time to kick back and read it!

All Best,

Grace (Amy)

Review: Diary of a Detour by Lesley Stern

 Dear Literary Loves,

Greetings!  I've been away from my book reviews recently taking care of family illness and my own chronic illnesses.  I truly miss my local book club meetings, but since we are in the midst of a pandemic and the book group meets on Zoom, it has just not been my cup of tea.  

In recently weeks I had a family member diagnosed with Chronic Lymphocytic Leukemia which is a blood and bone marrow cancer.  Her initial symptoms appeared to be fairly mild with swelling in the legs and ongoing fatigue.  Obviously, I felt for this family member as I lost my father to a rare subtype of Non-Hodgkin's Lymphoma.  He battled that disease for twelve years.  Naturally, I was quite interested in putting my eyes and hands on reading material regarding Chronic Lymphocytic Leukemia in hopes of not only better understanding it myself, but also so I could potentially pass along helpful information and advice to my relative.  During my search, I came upon a memoir that was soon to be published by a professor who was diagnosed with CLL and subsequently wrote about her experience.  The key word in that last sentence is "experience".   When I write or read a memoir I expect to at least be able to plot a time sequence particularly if it involves a serious illness.  So I just want to establish from the beginning that I never found any kind of sequencing and very little communication of the CLL experience in the book titled Diary of a Detour by Lesley Stern.  

Here's what I did glean from Ms. Stern's book:  She was diagnosed with CLL and evidently did not immediately require treatment.  This appears to be a slow-growing cancer.  Mainly, the author discusses how she distracts herself from concentrating on the disease in many creative forms.  First, she has a group of chickens, all of whom she names and can detail their personalities for you.  She has a cat named Elvis who actually brings her great comfort, but in the latter portion of the book, the cat's demise is brought about by the author's neglect of having the cat treated for a recurrent tumor on his leg.  Was it related to her perhaps not wanting to know the status of her own cancer or live in denial of it??  I could never clearly tell.  She is wildly fascinated with chickens in Mexico and the differences between chickens in Mexico and the United States.  

Next, the reader does hear about the author receiving immunoglobulin treatments inside a cancer center, but not to the degree necessary, in my opinion, to be able to explain to a fellow patient what to expect should they face similar treatment.  At this point in the book, I was totally frustrated.  And I am a former English teacher who had to make a concentrated effort to force myself to continue reading this memoir.  The middle portion of the book has the author taking a trip to Australia against the advice of her own oncologist.  And I believe she calls a friend who knows a physician and she goes with his recommendation to take a different medication during her trip and get on with the trip.  I admired the author's spunk, but at times I felt it was to her own demise.  She appears fascinated with Aboriginal art caves in Australia and the landscape, but I still was left wanting to know more about the CLL experience.  

I really became frustrated and flabbergasted when upon returning from Australia, the author decides she is going to take up the fermentation of cheese.  At some point during this portion of the book, she makes a reference to comparing cheese and death.  I think it had something to do with eating that which is decomposed (cheese/death) and then finding something wonderful eventually through the cheese's flavor (the afterlife}?  Interestingly, she does convey the frustration of losing someone you once knew who now lives in another part of the world.  When that person died, a part of her that had experienced life with that person also died.  And she felt losing those closest to us might just actually be harder for us than facing our own death.  Interesting and valid points I must say.  

At the end of the book, she hints at her cancer returning in a major fashion and delves into some detail about treatment of CLL with monoclonal antibody treatment vs. CAR-T therapy.  At that point I felt I needed to go find the Duke University Medical Library and just teach myself all the potential treatments should I or anyone I know ever become diagnosed with Chronic Lymphocytic Leukemia.  At the end of the book, the chickens she loves begin to die, the cat Elvis has expired, she worries about the person with whom she is most close (I assumed her significant other) and then basically signs off with the expression that everyone should get on with living and maybe we'll all meet in the afterlife??

I am not one who requires fancy, poetic, or singing prose on the page.  I do not require over glorified, elegant writing,  I do look for some communication of the experience about which you are writing and hope to be able to, after having read the book, to also be ready to recommend it to others.  Sadly, I am unable to do that with this book.  I hope to find a memoir about CLL that leaves me more knowledgeable about the subject and grateful for the way the author clearly communicated the experience and also inspired me in the process.  It was most definitely not the case with this memoir.

Till Next Time,

Grace

(Amy)