Yesterday I attended an noon conference at work and to my surprise found it very difficult to remain seated for the duration of the meeting. Dr Shelly Garone was the speaker. She is the director of palliative care for Kaiser in the Sacramento area and is an expert in dealing with and teaching about end of life issues. Five years ago she taught a two day seminar, required by California law, on death, dying and managing pain. She asked the question "How would you like to die," and gave options followed by a show of hands. In a room of 150 physicians, I was the only one who chose to die of cancer. This caught her attention. I responded describing how my father had recently died of cancer, and even though it was painful, he died at home with his mental faculties intact until the end. This was what I wanted. Well, I didn't 'technically' get cancer, but the end result will be the same; or so I thought.
This has been a difficult year for we members of the Northern California Amyloidosis support group. A significant number of us have died in the last few months. I always thought that I would die like most cancer patients; of malnutrition possibly coupled with a fatal infection. However, it seems that these amyloidosis patients may have gone a different route. I do not know all of the details but there seems to be a common pathway that includes dangerously low blood pressure with falls, strokes and probable fatal arrhythmias. But none of them had had heart transplants. I guess I won't really know how I will die until just before I do; like everyone else. (As long as it is not drowning)
Dr Garone taught that palliative care is not hospice care. It begins whenever it is needed in order to help a patient and a family develop a life-plan (as opposed to a death plan) and may occurs years before the inevitability of death. When she spoke of life-plan, I lost it. It was all that I could do to contain myself from sobbing uncontrollably out loud, in a room full of doctors gobbling down there Chicken Parmesan. I thought to myself, "I review my life plan every day."
For the first year and a half of my diagnosis, my disease and prognosis were ever present in my consciousness. Since January of this year that has changed. I now expect to live forever just like everyone else and I plan accordingly. I am not in denial as the former awareness now resides approximately 18.7 milliseconds below my consciousness and can surface at any time. "Why today?'" I thought, "Oh it must be the steroids, today is Wednesday." But what she said really struck a nerve and memories begin to flood my brain. Everything she put in her PowerPoint, I knew. I had lived though every bullet point. Did I need to make an appointment for a palliative care consultation? One of the things that I love about Kaiser is that we don't just care for the whole patient. We also take care of the family.
I do have a life plan. To me my first goal is to keep my family secure; physically, emotionally, financially and spiritually. Once that is done, any excess left over I want to use to fill my senses with new experiences. I want to see as many of natures innumerable beauties as I can. I want to feel sand between my toes. And food; well, the world's greatest chemist cannot describe a molecule with the unique delicacy of a single taste bud. I relish the sense of smell and the persistence of memory that it evokes. The sounds of music, birds, wind in the trees, rain on a tent, the sweetest voice I have ever heard when Barbie says "Hi honey, how was your day?" My life plan is to go as many places, meet as many people and experience all of the diverse beauty of life as my lame body will allow.
I think about it every day.
Love it. Now go do it! You're doing awesome!!!
Thanks for the inspiration. It definitely makes one think. Good luck. I hope all continues to go well for you and your family.
This was a really beautiful post. You are so good at writing.
Amen, Kevin. We are also in Palliative Care at Kaiser in Denver & can relate to what you say. Thank you for saying it so eloquently!
Tony and Sharen Iraci from the group shared the very poignant posting from Chuck Jaffe of Market Watch. It is a perfect companion to your post. Do you think we could convince your palliative care physician come and speak to our group sometime?
Jaffe's post: http://stanfordhospital.org/clinicsmedServices/COE/heart/DiseasesConditions/amyloid/
I always love to read your blog. I have been thinking about you and Barbie and your family and hope you are doing well!
As co founder of the Nor Cal support group would so much like to see California Kaiser send more patients to Mayo and Boston Univ. Med. Center for a second opinion and work up. We just had our Chicago meeting with over 40 attendees and over 5 and 10 year survivors with great quality of life in the 50’s 60’s 70’s and 80’s...what wonderful hope that gives to our newbies......yes we have our sad stories too; but HOPE is what we all need and to be able to have it provided by the patients themselves is so wonderful.
AMYLOIDOSIS SUPPORT GROUPS
Toll Free 866-404-7539
National Organization Member of NORD
www.amyloidosisonline.com - Over 840 have joined
"Don't Take Your Organs To Heaven, Heaven Knows We Need Them Here
thank you for the inspiration and reminder....even with planning and long years ahead, I think life will be too short. I want to spend my life with dear family exploring people, places and things....how about Paris?
I do-- so like-- reading your blog.
Like I said before----- it gives me an inner peace.
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