Postby juliej » Thu May 17, 2018 6:15 pm
I agree with others that you are a remarkable woman, deeply empathetic to the feelings of others, and an absolute angel for worrying about how your death will affect them!
Many, many people, when they're facing an impending loss, power down their ability to feel. "This is tough but I can't think about it now" becomes their mantra. Sometimes what they mean is that they don't want to think at all, so they become absent intellectually, emotionally, and spiritually. So how do you encourage them to stay in this place instead, with their hearts open, where there might be no future for you and the loss seems simply unthinkable? One things is certain: you won't be able to keep your distance from them. There will be layers and layers to this time, some moments better than others, everything from listening to the silly babbling of empty distractions on the television set in a neon-lit hospital room, to genuine heart-felt moments of connection that will make you all stronger and bigger than you were before.
Leave your expectations behind and ask everyone (including you) to just do their best. Sometimes doing your best might involve laughing in the face of the shitstorm you're facing, sometimes doing your best means caring way too much about the people you're leaving behind. If everyone stays right here in the moment, though, as hard as it seems, a funny thing happens. By refusing to look away, you can see past the petty distractions to what's really important in life. It doesn't work for all families, but if your family is anything like you, it can be a time of coming together rather than a pulling apart.
I don't know what it's like to die, but I do know what it's like to live as a Stage 4 cancer patient, with the Sword of Damocles hanging over my head. Somehow, by making room for the truly frightening treatments inherent to surviving this, life feels more valuable and more gratifying. I can see past the noise and trivialities surrounding me. In many ways, I am finally awake.
So here is my advice: Savor every moment of your time with them. Live loud and live joyfully and let them know what would make you the happiest. Because I guarantee you this: what will ease their pain and make this even the tiniest bit more tolerable is knowing that they are making every day of your life special. Ask for what you want: if you want to be surrounded by family and friends all the time, say so. If you want quiet time with your baby, say so. If you want to be distracted by non-cancer-related conversations, say so. Ask your mom to make your favorite dessert. Ask for hugs or prayers or whatever gives you peace.
It's excruciating to live knowing what's coming but everyone lands here at some point. Most people land here a day or two before they die. Some of us land here before our time and we get to see the world through clear eyes. Darkness and sunshine go together and no matter how f*cked up the whole situation is, the love you leave behind will be a living legacy for your baby girl, your husband, your family, and everyone who knows you.
xo,
Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1