Review: The Book Woman of Troublesome Creek by Kim Michele Richardson

 Dear Book Loves,

This week I opted to read and review a book I was assigned in a book club titled The Book Woman of Troublesome Creek by Kim Michele Richardson.  This narrative revolved around a young woman named Cussy who lived with her Pa in the Kaintuck mountains of Tennessee.  Cussy's mother has already died and is buried on a hill above the home Cussy shares with her father.  Cussy and her family are part of a group of people who were known for having a blue tint to their skin.  The blue-tinted skin disorder is inherited and it is known as Methemoglobinemia.  Several people in the mountains where Cussy lives also have the disorder.   

Cussy's Pa works in a coal mine and is often looked to by his colleagues to help lead the mine workers' union.  Cussy takes a position with the Worker's Progress Administration founded by President F.D. Roosevelt to help provide wages for the people of the United States as the country was recovering from the Depression.  As part of her job, Cussy rides a mule through the rivers, mud, and other debris along the mountain pathways where she lives delivering books and literature to her patrons.  The books are donated by larger libraries within the state.  The patrons to whom Cussy delivers books are incredibly impoverished and often have nearly nothing to eat unless they grow the food or hunt the local wildlife.  Many homes are well-weathered and the walls inside are often lined with newspaper.  There is a local school where Cussy delivers books and most of her patrons call her "Book Woman".  

Now Cussy's Pa wants to see his daughter married before he leaves this earth.  In these parts, a father would light a courting candle inside a lantern and hang it on a post outside a home in order to let available suitors know a daughter was eligible for marriage.  People in and around Kaintuck generally avoid the "blue-skinned people".  Actually, in Cussy's local town where she goes to the post office to help unpack and sort books for delivery, she is often treated as an outcast.  People look down upon her and oftentimes mistreat her.  She does have friends among the other book delivery employees.

Cussy's first marriage does not end well as the man only wanted to marry her to also obtain the land her father owned. One of the deceased husband's relatives often stalks Cussy both at her home and along her book route.  Cussy's biggest delight is delivering new reading material to her patrons while they return what she has previously delivered them.  There is Angeline, who asks for Cussy's help because her husband was shot while trying to steal a chicken to feed his family.  Angeline is pregnant and is quite tiny throughout her pregnancy due to the scarcity of food.  Winnie is the teacher at the local school where Cussy delivers books.  Winnie witnesses many of her students die from starvation.  One school boy named Henry is especially fond of Cussy and wraps a LifeSaver in a tissue as a gift for her.  All sorts of interesting patrons line Cussy's book route including one new patron named Jack Lovett who arrived from the West where he had worked for the U.S. President as a builder.  

Cussy tries to assist all her patrons as many do not know how to read or write.  An elderly woman named Loretta is blind and Cussy often reads to her.  Cussy and her Pa along with other blue-skinned people are not welcomed at local town events.  And then a doctor takes an interest in Cussy as he wishes to study what causes the blue-tinged skin in her family.  Low and behold, after dragging Cussy several times to a hospital and besieging her with tests, he and a colleague discover the inherited blood disorder causing the blue tint to Cussy's skin.  The Doc gives Cussy medication for the blood disorder in the form of Methylene.  It works and drains the blue tint from her skin, but it also has dire side effects and does not cause the skin to maintain a more normal skin tone forever.  Cussy is simply amazed by how the medication changes her skin tone, but as happy as she is to look "normal", folks in town still mistreat her.  It's almost like once you are designated as an outcast, you are always an outcast even if you are medically treated to help appear more like regular, normal people.  

The ending of this book is incredible and I will not give it away here.  I will say that I am glad the author created the ending she did for this book because though readers often like a book where the narrative closes and all the questions are answered and all the book's characters live happily ever after; life is generally not that way and superb narratives do not have to end that way in my opinion.

I highly recommend the book.  I never knew about the true to life blue-skinned people who lived often bleak and scary lives in the mountains of Kentucky.  Their hardships, burdens, and small acts of kindness should be known by all of us even if it just helps readers come to understand the virtues of being humble and helping others learn to be more aware of their own bias toward people who are labelled as "different'".  In my opinion, differences are what makes each of us unique and this world could use a heck of a lot more kindness and thoughtfulness being extended to everyone.

Best,

Grace (Amy)

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)