“Wondering Who You Are” is a memoir written by Sonya Lea, whose husband Richard was diagnosed with pseudomyxoma peritonei (PMP) in 2000. The book provides thoroughly researched, extensive and accurate descriptions of PMP and CRS/HIPEC to the point that it can serve as an excellent educational tool, and is also a hard-to-put-down tale of love, loss, renewal and self-discovery.
The first part of the book consists of alternating chapters describing Sonya and Richard’s life together up until his diagnosis of PMP, and their experiences after they heard those fateful words with which many PMP patients and caregivers are familiar: “you have cancer.” The second part of the book describes how Sonya and Richard rebuilt their life together following a cruel twist of fate: the procedure that cured Richard’s PMP and gave him his life back (he remains disease free to this day) took away his memory.
Sonya’s description of the couple’s experiences from his diagnosis of PMP through his treatment with cytoreductive surgery with heated intraperitoneal chemotherapy (CRS/HIPEC)—now the standard of care treatment of PMP, but at the time still considered experimental—will be familiar to many PMP and appendix cancer patients and caregivers. She recounts the initial shock of Richard being diagnosed with something they had never heard of, describes how Richard’s local doctor performed a tumor debulking surgery and advised them Richard’s only chance of survival would be to repeat this procedure every two to three years to stave off certain death, and relives Richard’s recurrence which led the couple to research an alternative treatment on their own.
Their research led them to a CRS/HIPEC specialist far from their home and a treatment that their local doctor called “a death sentence,” but which their own research told them was Richard’s only chance for long-term survival—and an alternative to local doctors’ plan of serial debulking, thalidomide and chemotherapy for the rest of Richard’s life. Sadly, many PMP patients and caregivers may find much in this book to mirror their own experiences related to the struggle in gaining access to the best treatment for this disease today, 15 years later. Sonya and Richard trusted their own research and decided to proceed with CRS/HIPEC surgery rather than follow their local doctors’ advice.
The chapters detailing Richard’s surgery and recovery in particular will resonate with any patient who has been through CRS/HIPEC, but even more so for the caregivers who have supported a loved one through the extensive and invasive procedure in hope of a long-term cure. Sonya vividly describes the scenes, experiences and feelings many caregivers go through when faced with a loved one enduring what many in the PMP community call the “Mother of All Surgeries.”
What sets Sonya and Richard’s story apart from any other PMP patient, to our knowledge, is the highly unusual complication of lack of oxygen to his brain that occurred during Richard’s procedure. The lack of oxygen resulted in a brain injury and ultimately the loss of Richard’s memory. While the most profound changes to Richard and Sonya’s lives and relationship are primarily shaped by his loss of memory and the subsequent transformation of his personality, many struggles the couple went through in adjusting to Richard’s “new normal” will resonate with many PMP patients and caregivers.
Sonya provides a raw and honest description of her difficult adjustment to the couple’s new reality, and the book ultimately serves to illustrate the extensive challenges a caregiver endures when a loved one undergoes a life-threatening diagnosis and massive medical intervention. She describes in detail the process by which caregiver and couple adjust to a vastly altered reality, and how they gained a new and unexpected perspective on life and love.
Learn more about Wondering Who You Are at www.wonderingwhoyouare.com.