...well, not really - I just wanted to get your attention :)
On one of my trips to Duke, my doctor told me that PBS was filming him and his patients for one of their documentaries, and he asked if I would participate. Sure, I haven't showered today, nor do I have any makeup on, but why not?
There were two guys doing this documentary, Michael Bernhagen and Terry Kaldhusdal, with an intern. It's part two of a series called Consider the Conversation. Part One - A Documentary on a Taboo Subject was about preparation for end-of-life care. Both Michael and Terry had experiences with family members where no one talked to them about hospice care or other alternatives. This sparked them to examine this topic further. I encourage you to read more about it at http://www.considertheconversation.org. It's been aired 428 times across 165 PBS stations in 31 states. It has inspired systematic change in the Wisconsin health care system and won 11 major awards.
Chapter 2 is called A Documentary about Unintended Consequences. An excerpt from the website says it "explores the impact of American medicine's success on the patient/doctor relationship and illuminates the important role communication plays in helping parties navigate the murky waters of severe chronic disease". They interviewed me about how I came to decide to get treatment at Duke, in particular with my kick-ass doctor, Dr Zafar (and his amazing Nurse Practitioner Leigh Howard). They asked me some hard questions, like how do I imagine a conversation with my doctor if he had bad news about my prognosis. I've never thought of that because I don't see that as a likely scenario, so why play the "What If" game with myself? Next question, please...
We also discussed whether or not it's a failure for a doctor to not be able to cure a patient with a chronic disease like cancer. That was a powerful question, because it leads to so many other topics, and that's when I really understood what this documentary was about. What is the relationship between a doctor and patient? How does a doctor communicate with a patient that has a potentially uncureable disease? How do you treat someone like that, both from a communication and medical perspective? How do you prepare them for "the end"? And how do costs of care impact these choices and decisions?
They also asked how I would like to leave this world, whenever that ends up happening. I said that I want to be surrounded by my friends and family, maybe at the beach. Afterwards, as I read more about what the documentary is about, I realized what that last question was really asking. With the advancements in medicine, would I want to be in a hospital, hooked up to cutting edge technology, with access to doctors and treatment that could extend my life? That never even dawned on me...nope, I want to be somewhere peaceful and not at a hospital.
As I write this now I realize that I'm still not very comfortable thinking about end-of-life topics because I'm not ready to leave this world yet. I was recently reminded once again about how rare I am. I asked my nurse if I should get another colonoscopy, because it's been a year since my last one which discovered my tumor. She said she doesn't typically have that conversation with patients that have metastatic cancer, because they usually aren't cured. But yes, I should have one after I finish chemo (only one to go!) This is a reminded of how lucky I've been, and I just keep wondering if my luck is going to run out.
I need to get back to living a healthy lifestyle. I've gained over 25 pounds since this began a year ago. I know I can lose the weight, because I did it earlier that same year. I just need to be able to get back into a routine of going to the gym, swimming, cooking, etc. And I can't seem to do that when I'm going to Duke every two weeks. So I'll be patient for just a little longer...
I'll keep everyone updated about my CT scan at the end of September (not scheduled yet), so that will likely be the next blog. Life is good :)
TTYL
Sarah xoxo
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