Maybe this cancer is not teaching a lesson about learning how to live. I do that well. Everyone can see that I know how to live well. I love and embrace and say “yes” to life. That is not a question. Maybe this cancer is teaching a lesson about how to die. Let me be clear, I’m not giving up. I am grappling with what the doctors have told me and I am processing it. There are no white flags being waved.
I’m going to die.
We all are, of course, but my time will come before it’s supposed to, whatever that means. I’m probably going to die before my children graduate from high school. Maybe before they graduate from middle school. I’m not going to die tomorrow or the next day, but maybe next year… or maybe the year after that.
I’m going to talk about dying to you. To the adults in my life. I’m only going to talk about dying a little bit to my kids, but I will talk to them about it too. I’m going to talk about what I want at my funeral and what I want for my children and my husband after I die.
I’m going to start with the swoopers.
You know, the women who will swoop in to take care of my husband and kids after I die. Listen ladies, because you’re probably already reading this, it’s okay- they’ll need someone, but believe me when I say there is an army of strong, protective women ready to fully vet you and make sure you are worthy of parenting my kids and partnering my husband, so you better come equipped with a rad fucking spirit, a strong backbone, a great sense of humor, and a giant heart. I want you to swoop in because goddess knows Jim won’t be on the hunt. And if you hurt them in any way, you bet your ass I’m going to haunt your every waking moment.
When I think about living, I focus on what I will do. It’s loud, energetic, and active. When I think about dying, I imagine what I will leave behind. My thoughts are centered, deliberate, and calm. When I’m gone, what will my husband and children, parents and siblings, friends and family still hold of mine? What will my legacy be? I want resolution in my relationships. I want my friends and family to know that I love them and that love is eternal, so that won’t go away ever. Only my body will. Which is sad and hard. I want to laugh all the way to my grave. But I don’t want an actual grave- just a place where you can go and remember me. There is an episode of This American Life called “One Last Thing Before I Go” and in it there is a story about a phone booth in Japan where people could go to talk to the loved ones they lost in the tsunami. I love this idea. I’ve contemplated getting a phone booth in my backyard so I can talk to my dad. I just love the thought of having a place, you know?
I want to tell this girl from middle school that I was wrong when I told her I didn’t think we should be friends anymore in the 7th grade. My self-esteem was so low and I thought I would get more friends by not being friends with her. I was wrong and I’m pretty sure that I threw away a great friendship so that I could be accepted by a different group of people that I wasn’t really even accepted by. I should have said this a long time ago. I have no idea how to prevent my daughter from making the same mistakes I’ve made and that is terrifying. I may not be around to tell her this story when the time comes.
I still have a lot of living to do, but we all need to get used to thinking about dying, because it’s coming too. As I know from my dad’s untimely and unexpected death, you never know when you are going to die. What will you leave behind? Think about it.
My cancer has progressed. The liver tumors have practically doubled in size since my last scan. There is new tumor growth in the lymph nodes in my upper abdomen and in my sternum. I feel fine. At times, I have some shooting pain in my breast and in my rib area, but it’s short lived and not too bad. My time in the clinical trial at Dana-Farber is over. I will resume treatment in Vermont and will try additional chemotherapies that I haven’t tried yet. The first, I hear is easily tolerated. Maybe one of these chemotherapies will do the trick. Maybe they won’t.
The doctors say that my cancer is resistant to chemo, which I had surmised. They don’t know why. Doctors at Dana-Farber are going to take a biopsy of my tumors to determine their DNA, which may help figure out how to treat my specific tumors. They will also keep monitoring studies to see if I meet the criteria for anything. Dr. Herold from DF said that it is not time to give up on the chemotherapy yet, but that if there are things I have always wanted to do with my life, I should do them now. She said to focus on my family, go to therapy, make great memories, and talk about what I want for the end of my life so that it’s clear.
Okay. Will do.
I’ll make a bucket list.
It feels so cliche. I am doing it because I have a legacy to leave and memories to give my children, family, and loved ones. This bucket list is focused both on my exuberant life, and my deliberate death plans. I’m making it. I have places to go and things to do. I may not make it to everything on my list, but hopefully I’ll get pretty far in solidifying my legacy. Maybe this new chemotherapy will work, and maybe it won’t. But I need to make a legacy that will live on even in my absence.
Morbidity aside, I wish this was normal. I wish talking about what it will be like when you die wasn’t so taboo. I mean, wouldn’t it be nice to know what your loved ones wished for in their absence? Don’t you wish you could live your life with absolute authenticity in your relationships? With a crystal clear conscience? With nothing left unsaid? I do. If death brings authenticity and clarity, is it still something to be feared?