MRM Lecture Series

In Memory of Michael S. Ratner

Caregiver Stories

Carolyn’s Story

CarolynCaregiverStoryECMy best friend’s husband is dying from esophageal cancer. It has been several years since his diagnosis. As a caregiver in the final days, it was a challenge to be my normal happy go lucky self. I couldn’t say, “let’s go out to dinner again this Christmas” because he was too sick. Instead, I concentrated on the fun times that we had experienced and laughing at the memories that we had created together. Soft music played in the background, as his friends came to visit him. One by one, he greeted them with his unforgettable smile.

My reassurance covered him like an worn, soft blanket; it consoled and comforted him. I let him know that his spouse would be taken care of, but the most difficult time came when he asked for permission to relax and die.

 

Carol’s Story
A CAREGIVERS GUIDE TO THE CANCER JOURNEY

OLYMPUS DIGITAL CAMERAI walked with my husband Julian Clark in his fight against esophageal and stomach cancer. He was between stage 3 and 4 when diagnosed and we were told that he had a 20% chance of successfully fighting it. After the initial shock, we decided right away that someone had to make up the 20% and it might as well be him. This mind set may not have been realistic; however, it made so much difference in the quality of our lives in the 15 months that he fought cancer.

The most important thing that helped us was to seek support from people. It was very helpful to have other people with cancer to talk to and receive support from. We went to the esophageal support group at Banner Good Samaritan and to the weekly support groups at the Wellness Community. It was very helpful to have other people with cancer to talk to and receive support from. It gave us hope and courage to get to know and regularly meet with others who were also fighting cancer.

It is also essential to keep up communication with the outside world. I already had a blog on which I continued to post pictures, thoughts and happenings. I also set up family and friends e-mail groups so I could send regular updates to our support network and ask for specific prayer and positive thought requests. You can also use sites such as www.carepages.com or web based care pages that many hospitals currently have. We were given so much strength and courage when we read e-mails and cards from people who held us in their thoughts and prayers.

Our cancer journey was hard and wasn’t always fun but it was always good and positive.  As we talked and prayed together throughout the journey, we grew closer than ever as a couple. We felt brave, hopeful and loved covered as we were with prayers and support from our family and friends.

It’s important to keep your life as normal as possible. We were told that after a cancer diagnosis, there is a new normal. That is true, but we weren’t too thrilled to accept this “new normal” life.  We were forced into it by doctor visits, radiation and chemo.  To keep some of the normalcy in our life, we kept up our old activities and interests as much as possible.  I continued my regular activities and work. Julian was carving beautiful wooden pots and he continued to work on them as much as possible after the cancer diagnosis.  We had children, grandchildren and family visit from out of town. We babysat once a week with our new granddaughter. She made us laugh.  Julian would be playing with her and I would often hear his big booming laugh ring out in the house.  These things gave us joy. We learned to appreciate each day and person and love more deeply.

In December after more chemo, the PET scan didn’t show any cancer activity anywhere in his body.  We were so thrilled and felt very positive. Three months later, the repeat PET scan showed cancer in his liver and bones. The cancer had spread. As with many journeys ours didn’t end the way we planned. We wanted more time, but it wasn’t to be.   However, God was with us all the way holding us up from all around.  Julian had been telling me for a couple months that he was at peace and wasn’t afraid of dying. He told me the day before he died that he didn’t think he would make it through the night.  He would wake up calling for his Mother, which made both of us think that she was nearby.  Julian died peacefully in his sleep on April 29, 2011.

Julian was an architectural illustrator, artist and sculptor. I wanted to honor those gifts and his life at his memorial service. I was afraid that I wouldn’t have the strength to plan it.  Our church helped start the planning. The Marine Corps Honor Guard was contacted to present the flag at the service. Family came into town to help. They designed the memorial folder, put together pictures into a slide presentation, helped sort through Julian’s art work for display, planned and shopped for what I called the “gathering of friends” at our home after the service. Many friends brought food.  I include this because the service was something I was so afraid of however, it was actually such a touching, healing time for all of us.  I treasure these days in my heart. There were many children playing. They kept us light hearted and made us laugh. Julian would have liked that. I could almost hear his booming laugh in the background.

Jerry’s Story
Jerry & Bonnie Bauer 

“I owe Bonnie more than I can repay so I devote as much time as I can to The Wellness Community in her honor.”

jerryAt age 68, Jerry Bauer describes himself as a “reasonably healthy male who is very happy to see daylight every morning I wake up.” This hasn’t always been the case. Jerry’s November 2005 diagnosis of stage 3 esophageal cancer sent him into shock and despair, especially upon learning that the five-year survival rate for esophageal cancer is only 9%. Jerry’s primary concern was to not be a burden on his family. “I wanted quality of life, instead of quantity,” says Jerry. “So I began planning various ways to be sure I would not be a burden, including suicide.” One of his biggest frustrations was finding someone who had survived the radical surgery he was going to have. It took more than two months to find a 5-year survivor from Canada willing to talk. “He focused on all the things that went ‘wrong,’ not with the fact he was still alive! I wanted to see the glass as half full.”

On the day before Valentine’s Day 2006, Jerry’s surgery went surprisingly well except for the fact that the surgeon came into the waiting room only after 2-1/2 hours of surgery and not the anticipated four to five. “Bonnie was certain that I had not survived or was so far gone that there was no hope,” Jerry says.

In reality, he was thrilled that Jerry had come through with flying colors. He was pleased, that is, until the next day when the pathology report came back. There were 13 nodes on the exterior of the part that had been removed and two of them were positive for cancer. The doctor was very upset to think they had gotten by him and this meant Jerry would need to have radiation plus chemo in order to have a chance for a full recovery. Bonnie and Jerry had already decided they were going to request radiation as “insurance” that the cancer would be eradicated. This eased the surgeon’s mind a great deal.

Jerry says that Bonnie, his wife and best friend of nearly 37 years, has been his personal Florence Nightingale. “Without her help. love and support there is no way I could have completed this trip on my own. She stayed with me for the duration of my hospital stay, sleeping in a convertible chair in my room, and being awakened every time someone entered the room. She monitored my meds to be sure I got what I was supposed to have. She got help for me when they forgot to be prepared for my Restless Leg Syndrome. She was my personal secretary, accountant, advisor, part-time pharmacist and full-time best friend.”

There were a few other ups and downs during the rest of his treatment but “they were relatively minor compared to my emotional state,” Jerry admits. “I had a very hard time learning to live with the fact I had a life-threatening illness. Had it not been for my chemo nurse referring me to The Wellness Community, I’m not sure how I would have gotten through it.” Both Jerry and Bonnie found friendship, education and the ability to take control of their own destiny as far as the treatments were concerned. “The satisfaction I receive by volunteering as a host of Newcomers Orientation and visiting with doctors, nurses and staff members at hospitals and clinics as an outreach volunteer are wonderful,” says Jerry. “My involvement with The Wellness Community is directly related to my success of being cancer-free for nearly three years. The words I live by I share with all those I meet, ’Today is the first day of the rest of your life. Live it as though it is your last!’”

Bonnie Bauer’s Thoughts on Caregiving

My role as a caregiver for Jerry was really pretty easy because he has had such a positive attitude throughout our journey. After his diagnosis my role was pretty much to be his advocate, learning all I could about the cancer, looking for treatment options, researching doctors and facilities and just being at his side.  Once he started chemo and radiation the biggest challenge was to get him to eat enough calories and protein to keep his weight up. He never got out of the house without my making sure he had snacks with him.

I think the overall caregiver role is to listen, be supportive and to assist with any medical needs and just to be there. Attending the caregiver support group at TWC was a big plus.  It doesn’t matter what type of cancer you are dealing with the basic issues are the same both for the patient and the caregivers. The emotional support and sharing meant a lot.  As caregivers we learned from each other.

Aimee’s Story
A Gift From the Dying 

SteinMy stepfather, Michael, died on November 11, 2010. I’ll never forget the fond memories I have of him, especially the closeness we developed during the last few years. The greatest gift he gave to his family and friends was the “art of dying.” He taught us all how to die gracefully and in the process, he taught us how to live. I’ll never forget how stoically he stood when facing death. He worried more about his family and friends than he did about himself. During the last few months of his life he shared his wisdom with everyone he came in contact with. He faced his cancer with courage, never complaining about pain or feeling sorry for himself. He smiled up to the last hour of his death. I will always remember him, especially a handwritten letter he wrote me after I cared for him. “Please pursue your dream of becoming a nurse. I truly believe you will become a wonderful, caring nurse one day.”

Tale of Two Women/ Two Cancers from the Eyes and Heart of a Caregiver
Robert H. Tamis, M.D.

WendyFebruary, 2002 was the beginning of a journey no father wants to start. It actually began six months prior when my daughter, Wendy, developed vague abdominal complaints. After six months of different doctors, and three different diagnoses, I flew to her because of the development of an uncommon, but not rare, phenomenon called “paraneoplastic acrosyndrome”, which, in her case was demonstrated as occlusion of the blood supply to her fingers – all ten fingers. The cause of this condition turned out to be Ovarian Cancer.

So, at age 43 my daughter underwent 5 hours of surgery as her initial treatment of Stage III Ovarian Cancer. At that time, 3 year survival rates for Stage III Ovarian Cancer was 30%. Death was more certain than survival. I was devastated. No father, no parent wants to outlive their child.

Throughout my years in medical practice I had been a strong advocate of patient education and the belief that a well-informed patient would be able to make logical decisions related to their care. And, so, I took that painful step of honestly discussing with my daughter the condition she had, the chances of survival, and let her know that I would be with her every step of this journey that we were forced to take.

Consultations were obtained with ICAN (International Cancer Advocacy Network), the leading organic chemist who had discovered nine chemotherapeutic drugs that were in clinical trials for the treatment of various forms of cancer, and different oncologists in Phoenix. A team approach was developed with the cooperation of my daughter’s oncological team.

Her treatment course was rough. Multiple hospitalizations occurred – coma, a stroke, and bowel problems. I slept at her hospital bedside as I took as much time off from my practice as I could afford. We discussed new treatment and the advantages and disadvantages of them.

Six months after her last treatment – 18 months from her surgical diagnosis – Wendy climbed the Half Dome at Yosemite National Park as a demonstration of not giving in to her cancer, of being alive, of being a vital human being, of conquering a devastating disease.

Another issue needed to be addressed as she was tested positive for the BRAC1 gene mutation. This helped explain why she developed Ovarian Cancer at such a young age. But, it also meant that she had a significant risk of Breast Cancer, and that risk only increases as she ages. (My other 2 children – daughter and son also have the same BRCA1 mutation)

We discussed prophylactic removal of her breast. It was agreed that her major risk was dying from Ovarian Cancer, and that if she survived five years, then it would be the right time to address her breast cancer risks. And, so, 5 years later a double mastectomy with implants was performed.

Thirteen years later Wendy is free of any indication of Ovarian Cancer. She hikes 25 miles into the wilderness to camp with her husband. Though Ovarian Cancer reoccurrence is still a risk, each year it decreases. She still is monitored with CA125 testing, and understands that even if she did have a reoccurrence, new drugs have come to market, new treatments are being developed, and a long life is hers to have.

BeverleeThere are flip sides to many stories, and unfortunately I have one. In 2010, after developing some vague abdominal discomfort, my wife (not the birthing mother of my children) was found to have some free fluid in her abdomen. At age 78 one should not have detectable free fluid in the abdomen. Fearful this was a sign of some type of malignancy, multiple blood studies were performed to look at biomarkers of different possible cancers.

Rapidly it was discovered that she had a rare cancer – Primary Peritoneal Cancer (PPC) (which looks like Ovarian Cancer and was first discovered to be different in 1956). After her surgery in 2010 it was discovered that my wife, Beverlee, had at least a Stage III cancer, and possibly Stage IV as there was a lesion in her chest wall that could not be biopsied due to its location.

Genetic studies were performed on the cancer tissue. Chemo-sensitivity studies were done as well. The oncologist did not believe in those studies and wanted to use the “gold standard” of therapy for this cancer. I’m not sure I would classify a treatment as a “gold standard” when the reported survival rate of PPC is 0% after 2 years of treatment.

In spite of outside consultations with ICAN and others, in spite of the results of the studies indicating different treatment from what was recommended by the genetic/chemosensitivity studies, my wife insisted that she receive the treatment recommended by her oncologist.

Treatment was started, consisting of two drugs. Typical side effects occurred. Her biomarkers fell. So, instead of receiving a full course of 6 weeks of therapy, my wife insisted that therapy had done its job in four cycles. She did not want the side effects. She insisted that she only had Stage I cancer and she had beaten it.

Not facing reality, not wanting to question her treatment, she was undertreated in that first cycle of therapy. As you can surmise, the cancer returned. Different therapy treatments were started and cycles never completed due to her concerns of side effects. Multiple minor surgical procedures were performed with genetic studies done on whatever tissue samples were obtained. Constant denial persisted and appropriate therapy never received.

As more and more complications ensued, her belief that she only had Stage I disease, and that she would go into complete remission persisted almost to the day my wife died under Hospice care almost two years after diagnosis.

It was painful to watch one commit suicide slowly during those years. All family members were constantly informed and could not help in changing the eventual outcome.

I have peace in knowing that Beverlee lived a fairly comfortable life throughout most of her two years dealing with her cancer. The what ifs – the wish that she would have been realistic about her cancer and treatment, the possibility that she might still be alive today still haunt me.

We have made so many wonderful advances in understanding the behavior of cancer by understanding the genetics of the disease. We might not cure all cancers, but we have a great opportunity to convert cancer into a chronic disease such as what we have done with Diabetes.

What if…… what if Beverlee had just one complete course of therapy…….what if she allowed input to a different approach to therapy…… what if she lived in the reality of the extent of her disease……..what if!

Jim & Nick’s Story

JimAndNickI wanted to start off by saying that my grandpa and I have been very close all my life, I consider him to be my father. He has taught me almost everything I know today. Papa is a fighter and always has been. Since he was diagnosed with esophageal cancer in November of 2014, I have watched him struggle through some days, bet yet strive in most. Recently I have been researching esophageal cancer and learning more about it, also I have visited the cancer support group with Papa and was thrilled to see so much support from people that have never even met Papa or myself. I am writing this after Papa’s successful surgery, he is doing very well, and healing fast. I wanted to thank the support group, and everyone who has prayed for Papa in the last couple months. I can’t thank you enough for all of the support and love you have given us through all of this. – Nick

PShawPicEat To Live – Patti Shaw
from the My Altered Self Blog
http://stern.tumblr.com

The doctor won’t remove Stern’s feeding tube until his weight has remained stable for one week. Right now he’s dropping weight like a B52. He has absolutely no appetite or desire to eat. Eating has become a chore. We learned the vagus nerve controls the appetite. During an esophagectomy, the surgeon cuts along this nerve. It then takes a while for the nerve to recover and begin sending signals again to the brain. There’s no telling how long it will take Mr. Vagus to wake up but we are anxiously awaiting the day when it shouts to the brain “Hey! This guy is hungry! Order up a steak!”
During my trolling on the Internet regarding EC (esophageal cancer) I found an article about a support group for EC patients right here in Phoenix (second only to Sloan Kettering in New York). We will attend our first meeting this Thursday, the 17th. Stern is struggling mentally and emotionally and likewise, so am I. We look forward to talking about and hearing from others who have walked in our path. If you’re interested, you can read about the support group here: http://www.azcentral.com/story/news/local/phoenix/2015/01/08/ratner-cancer-support-group-going-strong-fifth-year/21457839/.
This article is also very informative about EC, its symptoms and diagnosis.

 

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