Monthly Newsletter- September 15, 2022

These newsletters are often difficult to write. There's good news and bad news. We share stories of optimism and success, but we also acknowledge the despair that so many survivors feel. The realities of our survival can be daunting. Our job is to arm you with information about late effects, to help you to advocate for your own needs as a survivor, and to reassure you that you are in the company of a compassionate and dedicated "tribe." Sometimes this means being brutally honest about our challenges. Sometimes it means providing new ways of looking at those challenges. This month's newsletter includes both of those things, and much more. Keep the faith- we are with you all the way!
Cathy and Erin
Jane Isaacson

 It is with much sorrow that we must let you know that Jane Isaacson has passed away. She died on April 14 2022, from a variety of complicated medical conditions, ultimately all due to her history with Hodgkin lymphoma. Jane’s family had asked us not to make this announcement until they had a clear picture of the circumstances that led to her death.
Jane developed sepsis following a urinary infection in February, and, although she was initially recovering well after a spell in ICU, she then suffered an abscess near the gall bladder. The severity of her illness was due to very significant internal radiation fibrosis, making any surgical repairs and even further diagnostic procedures life-threatening. As many of you know, Jane also suffered from heart disease, requiring open-heart surgery in 2019. The collective damage from all the late effects of her earlier cancer treatment created a medical crisis that she was unable to recover from.
Jane was a shining light. Her face radiated joy, and she often had a twinkle in her eye, even when she wasn't feeling well. She was an active member on the Board of Directors for Hodgkin’s International and was passionate about our mission. She was always supportive of other Hodgkin's survivors, a listening and empathic ear even when she was recovering or dealing with things herself. Jane was sister-in- aw to Anita Isaacson, the pioneer of our Hodgkin's Survivorship Facebook Group. Jane loved life and knew how to celebrate each and every day. She was loved by so many and is hugely missed.

We are including a statement written by Jane's husband, Julian-
"Jane was life’s wonderful gift to me.

I first met Jane 37 years ago by chance at a cocktail party in London. I remember we immediately felt at ease with one another. We talked non-stop, oblivious to the music and chatter around us. We were falling in love.

We went on to lead a full and adventurous life together starting out in London during the vibrant 80’s and then moving to Jane’s beloved Spain in the early 90’s. I discovered early on that Jane had suffered Hodgkin’s Disease as a young 16 year old, which I found a cruel coincidence as my sister, Anita, had also contracted the disease around the same time. But we were young 23 year olds, Jane was in full remission and we had our entire lives ahead of us.

Jane was beautiful and intelligent but above all, Jane had a tremendous zest for life, full of hope, love and fun despite what had been thrown at her as a young teenager. She loved and enjoyed so many things. She sang soprano in the University Choir; she founded a bookclub and was enthralled by literature and art; she adored traveling and exploring different cultures and food; she was an ace cook! She also worked hard, a perfectionist in all she set out to achieve, first as a translator and then as my co-Director, my soundboard and support in everything. She was invariably happy and warm and this was infectious. She had a vibrant social life - she emanated charm and possessed natural poise and elegance, drawing people to her. Always sympathetic and compassionate, many times absorbing and softening the pressure felt by others (myself mostly!), even when she herself was under the weather. But most of all Jane was a doting mother to our two children, George and Maria, who were her greatest treasures.

Jane new there were risks stemming from her earlier treatment. She made sure she knew as much as possible about them and was extremely diligent with her check ups and medical care. She believed this attitude was crucial in helping to slow as much as possible the onset of serious illness. She drew great support and comfort as well as valuable information from fellow survivors through the Hodgkin’s International Group. Needless to say, Jane was very proud to be a Board member and always endeavored to contribute whatever she could to such an important and vital institution.

As more serious late effects of her treatment surfaced, one after another, Jane’s reaction was stoical and full of strength – she rarely complained and just got on with it. And after each operation or medical intervention she would re-surface and emerge once again into her brilliant light of life. In the end, Jane showed me and the children what was truly important.

We love her forever."

The legendary Dick Vitale-

Long-time sportscaster Dick Vitale shares his story of surviving melanoma, lymphoma, and vocal cord surgery- in Coping Magazine, September 2022
Dick Vitale's Story
We wanted to share the link to this week's conference on cardiac late effects in pediatric cancer survivors. It was a terrific presentation, put on by the Children's Cancer Cause, and in conjunction with the Federal Drug Administration in the US. "Pediatric" survivors included those up to 35 years of age at time of treatment. We heard from long-term survivors as well as the parents of children who had suffered greatly from cardiac disease due to their treatment. Their stories were very moving and all too familiar. Most importantly, this was a presentation that was clearly intent on having the input and participation of survivors. 
Karla Guererri, fellow Hodgkin's survivor and Hodgkin's International board member also attended, and Susan Strong, another fellow Hodgkin's survivor was one of the panelists. If you were not able to attend, here's your chance to hear it all!
Reducing Cardiac Late Effects in Pediatric Cancer Survivors

Here are three articles that highlight the progress in heart valve replacements. We are hearing about an increasing number of survivors who are experiencing heart valve issues. While we can not recommend one procedure over another, Hodgkin's International is committed to bringing you as much up-to-date information as possible on this subject. This is a rapidly changing/growing field of study, and that is good news for those of us who need different options for treating heart valve disease.
Article on Epic Heart Valve
Article on Heart Valve Clinical Trials
Durability of Biological Heart Valve Replacements
Should we stop saying "I know just how you feel?"

"You don’t. And you’re also steering the focus away from someone who probably just wants to be heard." Radio host and writer Celeste Headlee, in Ideas.Ted.Com

From Erin:
Yikes! I had mixed reactions reading this article, but ultimately felt it was something we should share in our newsletter. I am certainly guilty of making comments like this. I usually say something like, "I get it, I really do." I've always thought that I was expressing a sense of comaraderie, that I was letting the person know that they were not alone. 

Having felt utterly alone for many years, it has been comforting to hear other survivors who were saying, "Me too," especially if their experiences closely mirrored mine. It has always felt like a small miracle to know other long-term Hodgkin's survivors. The truth is, no two experiences are exactly alike, no matter how similar they may seem. The differences in experiences, even small differences, make it impossible to really know what someone else is going through. 

After reading this article, I may not be so quick to show that I understand by sharing my own stories, unless asked to. I can do it in other ways- like by being a better listener.
Should We Stop Saying "I Know Just How You Feel?"
Above- Dr. George Canellos (left) and Dr. Vincent DeVita (right)

Treatment of Hodgkin Lymphoma: A 50-Year Perspective 
in the Journal of Clinical Oncology

From Erin-
This article happened to pop up while I was researching Late Effects. It's from 2014, so not new, but it's a wonderful overview of the diagnosis and treatment of Hodgkin lymphoma. The authors- Dr. Canellos, Dr. DeVita, and doctors Rosenberg, Lister and Friedberg (not pictured) are well known as some of the earliest champions of successfully treating Hodgkin's. This is a research-based article, but survivors will be familiar with many of the terms included. 
We should note that there have been further successes with the treatment of Hodgkin's over the last 8 years as well as greater focus on long-term effects.
50 Years of Hodgkins-NCI repor
"Cancer and Armed Conflict"- in the Journal of Clinical Oncology

Many of us have been following the news of the war in the Ukraine, horrified at images of this war-torn country and imagining the utter hell that they are going through. But....what if, in addition to living in a country at war, you were also trying to survive cancer? This is a story that appeared in a recent issue of the Journal of Clinical Oncology. It is about a young man who beat Hodgkin lymphoma as a boy but ultimately died of osteosarcoma, all while living through the terror of war in Armenia. 
Cancer and Armed Conflict
The National Coalition for Cancer Survivorship (NCCS) recently announced the honorees for the 2022 Ellen Stovall Award for Innovation in Patient-Centered Care.

They are Patricia A Ganz, MD and Alicia Staley.

Here is the statement given by NCCS about these two amazing women. Hodgkin's International congratulates them both on their outstanding work in survivorship and their well-deserved awards.

"As one of NCCS’s founders, Dr. Patricia Ganz has been a leader of the survivorship movement for decades. She has been instrumental in developing the field of cancer survivorship, advancing the science, advocating for guidelines and policy change, and mentoring investigators and clinicians who contribute to the research and care of cancer survivors. She is truly an innovator in patient-centered care and a deserving recipient of the Ellen L. Stovall Award.

Alicia Staley has a cancer story and journey similar to Ellen Stovall’s. Like Ellen, Alicia has dedicated her life to advocacy – helping other cancer survivors navigate their treatment and survivorship, connecting advocates with researchers, and making sure that people touched by cancer have a seat at the table when decisions are made. As a co-founder of the breast cancer social media (#BCSM) community, Ms. Staley created a worldwide network of patients, advocates, caregivers, clinicians, and researchers, providing support and advocating for better cancer care".
NCCS CEO Shelley Fuld Nasso

NCCS Announces 2022 Ellen Stoval Awards
Jerry Cornacchio-   The Myth of Survivorship 

Jerry Cornacchio, fellow Hodgkin's survivor, submitted this blog on what "survivorship" means to him. 
(Please note: the thoughts and opinions expressed within the content are solely the author's and do not reflect the the opinions and beliefs of Hodgkin's International).
"I titled this article  'The Myth of Survivorship' because I wanted to suggest a more active participation in our lives than that of being merely survivors. I do not use the word "survivor" in describing myself because I feel like it connotes a human being who is a bystander, besieged by forces out of their control, or in this case a pawn in the disease process and thoroughly victimized by it as though the individual is not a part of, indeed one with nature.
When I first saw the term "survivor," about 25 years ago, I did not realize it applied to me. Eventually it dawned on me that I did indeed fit into that category… and then I confess that I did find it somewhat comforting. I saw that the word "survivor" gave me some solace because it took away my responsibility in the matter of having had Hodgkin’s Lymphoma; including the shame of being imperfect - a feeling that I had lived with since my diagnosis. I was an adolescent, still very unsure of my place in the world. I had trouble with the term “survivor” because it clashed with my life’s work as I had come to understand it. 
The life challenge, as I see it, is to find out what it means to really take responsibility for my life, for all of it, the crappy childhood, the difficulties in school, the rocky relationships, and for having had Hodgkin’s Lymphoma. I remember thinking in some of the worst of times, “Surely God would not have given me this challenge if it were not mine to do, if I wasn't up to it.”
The expression I like to use is "beyond survivorship."  It is the recognition of myself as being involved in the dance of my own evolution, as part of nature, not merely at the effect of it.
Since the age of 18, 58 years ago, I have sought to make sense of what’s been happening to me, to my body: “Why me, Why Hodgkin lymphoma, Will these inexplicable difficulties with my body ever stop?” 
For five years I was treated for Hodgkin lymphoma Stage IIIB by way of a splenectomy, mediastinal tumor seeking operation, cobalt gamma radiation and X-ray therapies. Within months after the last operation and a course of X-ray treatments,  I had to visit hospital emergency departments with severe abdominal pain. The frequency of those visits varied from weekly or every few weeks, or even to months if I was on a good run, and has continued for over 50 years. 
My presenting symptoms often baffled the attending ER physicians. I was subjected to varying individual attitudes about my condition, including being labeled a hypochondriac and a junkie. Eventually my condition was recognized as being due to adhesions which had resulted in one bowel obstruction after another. 
Over the years I often tried being stoic. I learned to meditate through the pain, which frequently lasted for days on end. Sometimes meditation worked and the pain passed. But there were many times when I could not bear the pain and suffering any longer, when I thought my intestines were going to explode. I would go to an ER and ask for some Demerol/Vistaril, or some morphine, and in recent years, Dilaudid. I managed to have only a few operations to relieve adhesions in the small bowel. My body doesn’t respond well to being cut open. I stopped allowing surgical interventions because they just created more problems.
I now realize that through all those episodes of small bowel obstructions and other ailments common to Hodgkin's survivors (endocarditis, aortic valve replacement, headaches caused by radiation fibrosis, sterilization, congestive heart failure, hypothyroidism, chronic kidney disease, and spinal problems from stem to stern), in seemingly random order, all 7 stages of the grief cycle as described by Kubler-Ross.
For reference I cite them here: Shock, Denial, Guilt, Anger, Bargaining, Depression, Acceptance.
As important as it may be to go through each stage of the grief cycle, it is of paramount importance not to get stuck in any one stage, for all stages are in the same game  -- the belief that something is being done to me; again a victim of circumstances rather than a participant in the grand dance. 
I did get stuck in various stages, most notably in guilt, in anger, and in the victimhood of depression. It has been a lifelong process that has forced the evolution of my soul in this lifetime beyond anything I would have willingly or could have consciously designed for myself. From my current perspective, getting sick was surely a gift of grace that was offered so that I could rise above the all too common belief that all I am is a body/mind put on this planet to endure endless suffering and loss. This gift of grace pointed me to the real work of being a human being. The work entailed inquiring deeply into my past, my conditioning, my beliefs and my very idea of myself as a body/mind. I discovered what I always knew to be true in a deeper, more subtle part of my being-  that I must be something more than what was readily apparent, something more than a mere body/mind. That “something more” has been watching this body/mind as it goes through all its seemingly endless cycles of suffering, recovery, pain, fear, elation, depression, etcetera. 
This understanding allows me to see a much larger picture of what I am as a human being; it's the dawning reality that I am consciousness using a body as a vehicle of expression on this planet. Suddenly the whole frame of reference shifts from one of a very local personal perspective to one of much greater scale that has no boundaries. I begin to recognize myself as the formless witness of all that is happening in this life. Even the many times I had been writhing in pain and hoping to die... for now I recall that someone, something, some essence was always watching even during the worst of the writhing, there was always a witness. The Witness has not gone anywhere, it watches even now as I write about it, it does not get involved, it just objectively observes.
It is the norms of our cultural conditioning that tell us to put our faith in the medical model. We confine our thinking about ourselves to the idea that we are body/minds who are victims and thus subjected to all the suffering that life offers, but not able to realize there can be pain without suffering. Suffering is optional, but it seems like the only possibility when we believe we are these bodies. As I have said, we are not merely these bodies that are probed and manipulated, drugged, operated upon, irradiated. No, we are the ones witnessing these bodies as they go through the various hoops. We are the "witness". WE are who is watching every single second of every single day all the vicissitudes of being in a body". 
Copyright © 2022 Hodgkin's International, Inc., All rights reserved.

Want to change how you receive these emails?
You can update your preferences or unsubscribe from this list.