Kenna Marriott, of Spring Hill, knows that journaling through the many emotions associated with grief recovery is a solid healing tool. Her daughter, Jeannine Mongelli, knew it as well.
The two made a pact 12 years ago to write a book that would help others navigate through the many storms that seem to attach to a breast cancer diagnosis. The idea was to provide both perspectives, from the experience of the patient and that of the family.
Jeannine, who had been diagnosed with the disease at age 40 after her first routine mammogram, was the initiator of the book. "She wanted to help other women understand what was happening and to assure them that they were not alone," Kenna said.
And Kenna was onboard with the idea. She would learn in the years to come that breast cancer, or any terminal illness, doesn't only affect the patient. Family and friends are also victims of the devastating disease. And it takes a dramatic toll on everyone it touches.
While the two had compiled some notes for their book, they never got the chance to work on it together. Jeannine succumbed to her disease after battling for seven years.
And Kenna, grief-stricken, was unable to even think about putting her experience to words for two years afterward. "And then I just started writing," she said. "I wrote everywhere."
She carried a little notebook with her wherever she went. She had 4,000 pages before she was finished writing, filled with the "couldas, shouldas, wouldas" of her experience with Jeannine's battle.
The book, entitled "Coulda, Shoulda, Woulda: Lessons, Learnings and Insights From a Mother About Her Daughter's Battle with Cancer," was published two months into a 400-page memoir of Jeannine's life, before and during her battle. It poignantly commemorates her daughter's legacy while intertwining life lessons learned of two who battled the war of breast cancer from different perspectives.
Still struggling with her intense grief five years after Jeannine passed, Kenna admits her grief has metamorphosed into a new kind of emotion. Her eyes moisten with tears as she revisits memories of her daughter and the journey they were able to share together.
Jeannine's journey included remission from breast cancer for about a year, Kenna said. "At that time, the breast cancer metastasized into bone cancer in her back. Bone cancer is incurable."
Jeannine fought hard to maintain her positive outlook. "But I knew from what others were telling me that Jeanine was eventually going to die from the disease."
Kenna explained the often-misunderstood emotions that are part of the role of caregiver. Each setback was a new reason to encourage Jeannine to seek another opinion or try alternative treatments. In the end, Kenna accepted that the decisions were Jeannine's to make.
"I had no one to talk to about it," she said. "Jeannine was holding on to the belief that she would win the battle even when the cancer spread to her bones. I knew better but maintained a positive face for her."
And Jeannine fought every battle with that kind of spirit she had demonstrated her entire life.
The book, Kenna said, is as much a gentle how-to guide for a loved one who is battling any debilitating disease or disorder. It is especially informative for the caregivers of anyone with any life-threatening disease. The fundamentals can be applied to anyone, Kenna said, whether it is cancer or Parkinson's disease or even a child with special needs.
The stages of diagnosis and the course of the disease are similar in most situations, beginning with disbelief at the diagnoses. When Kenna was told about Jeannine's breast cancer, it was as if her entire world had come to a stop.
"I managed to stay in control for about 10 minutes," Kenna wrote, "and then it hit me all over again. I was falling apart, and like Humpty Dumpty, there was no hope of putting me back together again."
For the next seven years, Kenna would struggle with her own role in her daughter's disease. They made mistakes that became clear after Jeannine's death. And she discusses things she would do differently if given the chance to do it over.
As the support system, Kenna urges the reader to avoid the grips of denial that easily become coping practices. But denial, she said, can rob you of the act of celebrating your loved ones life while there is still time.
"If you remember anything from this book, remember not to be in denial of the facts," Kenna wrote. "Don't let a positive day convince you of a nonreality. Take those pictures, dozens of them."
The book spans the time between Jeannine's initial diagnosis of breast cancer through its remission and the new challenges of cancer in her backbone, spreading throughout the bones in her body, her skull and, finally, the soft tissue of her liver.
Fighting the battle from the sidelines is daunting, guilt-inspired and painful for the loved ones, Kenna explained. Understanding how to support her daughter through the journey weighed heavily on her.
She sought guidance and reprieve from a therapist who Jeannine also saw during the last stages of her fight. Maria Rallis, Ph.D, who practices in Erie, Pa., wrote a poignant forward to the book. "Coulda, Shoulda, Woulda stands as a testament to the human spirit and will be Jeannine's legacy to her children and her gift to you."
After the fact, and with her experience now documented in a beautifully written, gently delivered guide to dealing with cancer from the sidelines, Kenna hopes her story will help others who walk a similar path.
She ends the book with the following poignant message: "And when I close my eyes and think of her and the joy she brought me, she and I can still be together in my thoughts. Yes, Jeannine lives on in my heart and in my soul. And when someone is truly in your soul, you will never be without them again."
"Coulda, Shoulda, Woulda: Lessons, Learnings and Insights From a Mother About Her Daughter's Battle with Cancer," is available from any online book seller including Amazon, Barnes & Noble and I-Universe. You can also visit Kenna Marriott's blog at Livewithcancer.info.