Keep me in your Heart

NorCal CarciNET Community has been blessed with members and leaders who have contirubed to the our Community and beyond who are no longer with us.

"Keep Me In Your Heart"
Warren Zevon - 2002

If I leave you it doesn't mean I love you any less
Keep me in your heart for awhile

When you get up in the morning and you see that crazy sun
Keep me in your heart for awhile

Hold me in your thoughts, take me to your dreams
Touch me as I fall into view
When the winter comes keep the fires lit
And I will be right next to you

Engine driver's headed north to Pleasant Stream
Keep me in your heart for awhile

 

The leadership of NorCal CarciNET Community has known and worked with Mitch Berger of the Captial Cities group for well over a decade. We admire his work and leadership. Mitch has entered hospice care and will be writing about it so that we all can learn and get insights from his experience. Mitch - we will keep you in our hearts always. Thank you for this wonderful gift


"It's no secret to some of you that after 20 years of dealing with my neuroendocrine cancer (formally called carcinoid) we have decided to end treatment and enter hospice care. It's not like there were many options. I was hoping for a new version of PRRT in Germany, but my cancer had advanced too much to withstand the rigors of travel and of the tumors that were there, around 50% were not likely to respond, It was time to step aside and let someone with better chances have their turn. While there are "Hail-Mary" drugs out there, Michiko and I decided long ago that my final days would be peaceful without infusion tubes, monitors and yet more time in the hospital.

For those who want to fight their cancer up until the last second, I offer no criticism, but in comparison, I have spent hours being visited by old friends that treatment would preclude g not to mention the intrusive nature of a hospital stay. Hospice has already given me so much time with family and friends that I cannot imagine any other way.

Over the next couple of weeks, I hope to talk about my cancer and the important lessons I've learned. I'll also be writing about some of the other great passions of my life, like political cartooning so not everything I set down is going to be of interest of you and a fair warning will also be very political. But today's piece is for everyone who has found interest in my struggle with cancer. There are many groups that cover NETS and I would consider it a tremendous favor if you shared this post with them. As a long-time survivor (20 years) I'd like to think that I've helped some of my brothers and sisters in cancer.

I don't like that I'm dying, but I am accepting it. I'm using hospice to shape and control my final days. I leave you with this fact, most people wait too long to use hospice and die within just a few days after entering. Some of that is because of rumors about hospice (if anyone has questions about hospice I'll be happy to answer to them). At this point, I'm told I have weeks, so l should have time to answer questions
I want to use my hospice experience for other NET patients who are facing or maybe coming to face the same decisions I've made. The simple solution is a longer hospice stay, if possible, is better. Your thought's experiences are welcome and don't be afraid to argue. I've lived my life arguing and I'm not going to stop now."

Terry grew up in Southern California with his sister and brother, attended college near home, in South Carolina, and then in Berkeley where we first saw one another in 1968. That fall, we both started at UC and noticed one another across the room in a modern dance class. He may not have been a great modern dancer, but I was struck by Terry’s comfort in his body; it was intoxicating. We actually met for the first time two years later when our Drama Department shut down due to campus activities against the war in Southeast Asia, and drama students started Theater for Peace. We wrote and produced anti-war plays, taking them to community venues like churches, schools, and home gatherings to stimulate dialog and action.

2017 10 20Chris Hayes
January 9, 1959 - October 20, 2017

After 2 years of telling his doctor something was wrong inside him Chris finally underwent exploratory surgery where a large tumor was removed from his intestines. It was carcinoid/NET. It had spread to several lymph nodes and his liver. In the recovery room Chris's mom asked the doctor how long would he have to live with this type of cancer. The doctor told him maybe 5 years.

Chris soon figured out that with a rare cancer, as he had, he needed to become very knowledgeable about this disease. Chris learned about a National conference for NET's in San Francisco which he attended shortly after that It included 3 doctors and about 40 patients. Chris started attending every National conference there was. At each conference Chris learned about treatments and medications that his own doctor had never heard of. Chris would tell his doctor what medication, at what amount and how often he should have it. His doctor was happy to concur.

At the time of his passing Chris lived with this disease over 30 years.

Edda Sky DivingNorCal CarciNET Community would like to celebrate the life of Edda Gomez-Panzani who passed on June 30, 2015.  Edda was instrumental in gaining FDA approval for Somatuline (lanreotide) for NETs patients in December 2014. Edda loved working with the patient community and spoke at support group meetings around the world since joining Tercica (now owned by Ipsen). Her last support group presentation was to NorCal CarciNET Community in late 2014.

Dear friends, Jeanette Shaffner the founder of NorCal CarciNET and an inspiration to many in the NET community passed away September 8, 2012. Jeanette had battled NETs since 1998. She was the pioneer of the Northern California carcinoid support groups. We will miss her greatly. 

Please feel free to leave any messages or thoughts in celebration of her life in the comment section below.