Circles of Love Collection STORIES OF COMPANIONS & FAMILY MEMBERS FACING PROSTATE CANCER

Circles of Love Collection STORIES OF COMPANIONS & FAMILY MEMBERS FACING PROSTATE CANCER

TABLE OF CONTENTS g Introduction Diagnosis Jo Ann & Jerry Margaret & Philip Jackie & John Nancy Treatment / Recovery Jackie & Jackie Christie & Clark Rebecca & David The Howard Family Living with Prostate Cancer Maureen & Jim Ed & Bill Kate & Tom Anne & Frank Advanced Disease Resources Wendy & Bill Barb & Bill Elizabeth Carrie Michelle

INTRODUCTION g Prostate cancer is a disease of the patient, the partner or spouse, and the family. While the patient experiences cancer in their body, those closest to the patient have an experience of prostate cancer that is very real as well. The challenges of the caregiver may not show up on a lab chart or test result, yet they are often equally painful and traumatic. Their experience can leave them feeling helpless, confused and alone. Their lives are also dramatically impacted by the diagnosis and treatment of Prostate Cancer. They, too, experience the treatments, the doctor visits, interrupted sleep, sadness, fear and grief. Us TOO created Circles of Love to acknowledge, empower and support companions, partners, spouses and family members of men with prostate cancer. When the idea for Circles of Love was first formulated, there emerged a collective vision of three interconnected circles: family, companion and caregivers. In the center of these three interwoven circles, there rests the patient. We know

the companions, spouses, and family members create a tangible intertwined circle of support - a CIRCLE OF LOVE that surrounds the men they love. Everyone walks the path of prostate cancer in their own way; both those who have it in their body and those who walk beside them. We believe there is no right or wrong way to experience prostate cancer. For you, there is simply your way and your way is exactly right for you. The purpose of this book is not to advocate any specific treatment options. Nor is the purpose of this book to offer praise or criticism for physical, emotional or logistical responses to prostate cancer. Instead, the purpose of the Circles of Love Collection is to share a variety of stories, choices, reactions, responses, and outcomes. Since the beginning of time, we have been sharing our stories as a way to connect, teach, inspire and inform. In the many Us TOO support groups, it is the stories of those who sit there with you that connect you to each other. It is the story of another that may possibly inspire or clarify something for you. In life, it is our story that can often define us, creating context, perspective and often the possibility for inner emotional healing. The people who contributed to this book are remarkable in so many

ways. Their honesty, courage, time and dedication are commendable beyond measure. Our gratitude for their efforts knows no bounds. They have freely allowed themselves to be vulnerable, and exposed their journey in hopes that their story will serve someone, somewhere, somehow A common theme among these humble people is, I m not sure my story is all that inspiring, but I am glad to share it if you think it will help. At the same time, the contributors to this book are very real people, just like you and me. They have an experience of prostate cancer just as you have an experience of prostate cancer. They have had physical challenges, emotional challenges, and logistical challenges just as you have experienced challenges, sometimes varying only by degree. Sometime differing widely, yet valid and real. Each story has a beginning, a middle and an end. Some stories begin with diagnosis, others long before. Some include the rawest most challenging emotions, while others do not. Some end in joyous recovery, others in death. Many fall somewhere in between, the end of their story simply being another way to describe today. This book is divided in to four distinct sections: Diagnosis Treatment / Recovery Living with Disease Advanced Disease.

While most stories include at least two or three of the above experiences, one generally stood out as a primary area of concern, pain, blessings, or area of growth. The placement of each story is not an attempt to over-simplify any given experience, but rather the natural outcome of the process of crafting their story and ultimately this book. We hope the stories in the Circles of Love Collection touch you as they have touched us. We call the book s contributors heroes because we believe that s what and who they are. At the same time, we want you to know we feel the same way about you. We acknowledge and honor your story. We acknowledge and honor you. Respectfully, Jo Ann Hardy, Us TOO Board of Directors Jim Keifert, Us TOO Board of Directors Tom Kirk, CEO Us TOO

g DIAGNOSIS g

OUR TINY VILLAGE THE POWER OF ONLINE SUPPORT Nancy g I'm not sure my story is all that interesting, begins Nancy, EXCEPT in the way it shows the power of the online community to deliver excellent information and effect change. Nancy s father was diagnosed with prostate cancer in July of 1995. My response to Dad s diagnosis was stupid! Naively I thought if you ve got to have something, then prostate cancer is the thing to have. I thought of it as an indolent form of cancer; I didn t know at the time how virulent it can be. The same month Nancy s father was diagnosed, the very first prostate cancer mailing list, Prostate Problems (PPML), came on line. At the time, Nancy was a free-lance copy writer and, in her words, a self-taught computer nut. Since Nancy was the only family member with an Internet connection at that time, she offered to find some information on prostate cancer. She quickly became her father s researcher.

Initially her father was interested in radioactive seed implants as treatment. He asked Nancy to send him information about the treatment and find the best seed implants (SI) doctors in his part of the country. As Nancy began her search, her first step was to sign up for the Prostate Problems mailing list. Because her father had a heart condition she had a number of questions. I put a question out there and immediately received a response. Through wonderful people I met via the PPML, I got a referral for my dad directly from Dr. John Blasko -- the father of the modern seed implant technique -- to the finest of the SI practitioners he had trained in my dad s area. She was a bit disappointed by her father s response to all she discovered. Initially, my dad -- who was in that numb, confused state that so many newly diagnosed men go through -- decided he was going to ignore Dr. Blasko s referral in favor of a local SI practitioner with a good bedside manner but very little experience, shares Nancy. This was disconcerting for Nancy but she felt uncomfortable doing or saying anything about it. My dad is not only a private person, but also very proud, so the prospect of questioning my father s decision was daunting for me, to say the least. In my family we

don t tell each other what to do, so I had to make a giant leap. Despite feeling uncomfortable, Nancy felt she had to share with her father her concerns about his choice. Because of all she learned during her research, she felt that with SI, quality of training and level of experience strongly affect the outcome of the treatment. I wouldn't have been able to bear the guilt if my dad had had a poor result because I was afraid to speak up. Nancy wrote her dad a loving letter and included -- with permission -- sections of emails from Internet friends who were knowledgeable about seed implants. She urged her dad to at least have a consultation with the nearby practitioner Dr. Blasko had personally trained and strongly recommended. Nancy later learned that her dad read her letter numerous times over the course of a week. Her sisters have long maintained that Nancy s father listens to her, the oldest daughter, more than either of them. I don t see it but they think it s true In the end, he decided to see the Blasko-referred doctor. He liked the doctor very much, was impressed by her experience, and learned his diagnostic statistics were worse than he realized. As a result, she recommended a much more intensive treatment plan then originally recommended.

Nancy s father decided to have treatment with this doctor and ultimately had an excellent outcome, with minimal side effects, and undetectable PSA to this day. While her mother was the primary caregiver for her father during his seed implant treatments, Nancy and her sisters provided emotional after-care by email and by phone. In addition, during the six months of pre-implant hormone treatment the entire family connected to the Internet and they had wonderful emails throughout the entire ordeal. During this time, we called our email communication our tiny village. It was wonderful and special, she recalls. Today Nancy looks back on her unprecedented and heartfelt letter to her father. Whereas before his diagnosis, her family maintained a level of privacy with each other, in recent years, aging and additional illnesses have caused Nancy and her sisters to become more involved in their parents lives. Nancy says, I don t see my letter as a watershed event. Rather an event on the continuum of getting more involved in their lives. Nancy describes the online support she received during this challenging chapter, It really isn't overstating the case to say that the help and information I received from friends in the online prostate cancer community may actually have saved my dad's life.

Once Nancy s father was recovering from his successful prostate cancer treatments, she felt the need to give something back to the online community from whom she received so much. In 1995, there was very little prostate cancer information available on line. In fact, the online world was only just beginning to gain popular use. Gary Huckabay was just getting the Prostate Pointers website organized, and Nancy offered to help in any way she could. When Nancy first joined the prostate discussion group, there were four or five gentlemen who were emailing each other in an informal round-robin they called The Brudders. They invited Nancy to join them, affectionately dubbing her the udder brudder. Over time, the distribution list on this group continued to grow and without adequate software or list management tools was becoming quite cumbersome and costly to manage well. Nancy offered to manage the list with some free software she was using and that began a vocation that continues today. By mid-1996, mailing list capability was added to the group. With the new capabilities, the informal SeedPods (a seed implant nickname that stuck after a bit of friendly banter) email discussion group, which Nancy had been managing, became the first of the Prostate Pointers mailing lists. Today there are fourteen mailing lists in all. And, nine years later, Nancy manages all but one!

I'm still here because commitments tend to wrap their tendrils around you, she explains. You get to care deeply about so many folks you meet in a community like this, and it feels good to be able to help in some small way. Her online friends mean the world to her and she genuinely cherishes their friendship. I have yet to meet any of the Prostate Pointers list subscribers in person, but I regard them as friends, and I cry each time we lose one of our men to prostate cancer. A tiny online village indeed...