Guest blog by Sherri Fillipo 2/12/15 http://www.sherrifillipo.com
If you were to ask me what is the most difficult thing I deal with, I would tell you it is letting me talk about death and dying – what I do and do not want to occur both on this side of life and what I want you to do when I am on the other. If you know me, you know that I couch a lot of things in the cloak of humor because as they say, “just a spoon full of sugar helps the medicine go down..” and it’s true. In a very southern way when I say something to my mother and it creeps up on the edge of death, she will say, “if you don’t shut up, I am going to smack you.” Don’t be alarmed. That is a very southern thing to say, no matter how old the child is. But it is her way of saying, “I can’t talk about that or I don’t want to talk about that or talk to someone else about that…” And I get it. I really do.
I was perusing through the New York Times this morning and came upon one of their “most emailed stories.” If you don’t read the NYT, every day they will list the top ten stories at the moment that readers are emailing to family and friends. The topics vary widely and I do get a kick of what is making the rounds. It could be anything from Obamacare to some strange recipe for artichokes. You never know. But one of the top stories today was about a woman who had recently died and the title of the article was Seeking a Beautiful Death by Jane Brody.
In it, the author quotes Dr. Angelo E. Volandes, author of a new book, The Conversation. A lot like the book I have been quoting by Atul Gawande (Being Mortal) the author says as Americans we have access to the best medical care in the world yet we often die some of the worst deaths in the world. Why? Because we do not have the “conversation” that would outline what we do and do not want at the end of our lives. I am not talking about those of us with terminal illnesses. I mean, as do these authors, all of us whether young or old, sick or well.
The list of questions that Dr. Volandes made (and that Ms. Brody used in her article) is so spot-on that I don’t need to add anything to it. The questions are vital for everyone to have answers to:
- What gives your life meaning and joy?
- What are your biggest fears and concerns?
- What are you looking forward to?
- What goals are most important to you now?
- What trade-offs or sacrifices are you willing to make to achieve those goals?
Make sure that you, as the future patient, have answers to these questions AND that you have shared them with someone who will be making decisions on your behalf. Having this information locked inside your heart is going to do no one any good if you have not shared it with family or friends.
And all of this leads me back to my chemotherapy decision. I had my last PET scan a couple of weeks ago if you remember. And the liver spots had shown a decrease in activity. I was supposed to have been back to my oncologist by now but had to reschedule my appointment. I am planning to see her today, Thursday, to discuss future treatment. I have decided I do not want to try either of the two chemos that she suggested to me when I had such a bad reaction to the Kadcyla. I am, however, going to accept a markedly reduced dosage and determine how I feel afterward. My family knows of this decision. I am not sure how they feel about it but they accept it and stand behind me while we see what happens. We all understand that they might not make the same decision, but they understand that it is the decision I need to make for me.