Tired

This past week has been garbage, to be perfectly honest. My grandmother got diagnosed with ovarian cancer last Monday, and my mom flew to Chicago to be with her. My great-aunt Donna died in her sleep on Wednesday. Mom got referred to MD Anderson 4 weeks ago and (despite our calls and emails) they just got back to us today to say they wouldn’t be able to get her an appointment until JUNE. So many people I know are going through pain that it feels surreal. Even my landlord is going through some truly terrible shit. I feel so frustrated by my inability to help my mother or grandmother or anyone else I know who is struggling.

People tell me sometimes that I need to “take care of myself,” at least, which honestly, I am, and I am underwhelmed with the results. I ate some roasted vegetables today but also a cupcake, and I meditated and I went to the doctor and I hung out with my dog a lot. I guess part of the reason people do this is so they don’t become catatonic or sob inappropriately at the grocery store, but it’s also an attempt to feel some measure of control over their own life. Unfortunately I blew past any relationship with this feeling a long time ago. I am annoyed that I seem unable to cope by engaging in self-destructive behavior, which seems like it helps people in movies. But I don’t like being hung over, and I like Star too much to cheat on him, and I am scared of driving too fast because I’m a terrible driver even at slow speeds. So I’m just like, maybe I’ll lay on the floor and that will convey the depth of my exhaustion to the universe. But the universe remains unimpressed, and eventually it seems like I might as well get up again.

In the spirit of “might as well get up again,” on Sunday Star and I went on a hike on the Palmer Moose Creek Railroad Trail, which is along an old abandoned rail bed the army used to use. It broke 50 degrees and felt almost like spring.

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I wish I was the kind of person who knew which mountain this was

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Same, Bert. Same.

 

 

Getting A Second Opinion

*Before I begin, a caveat: I am not a medical professional, I am not affiliated with any cancer organizations, and I do not claim to be an expert. The opinions below are personal ones developed over six years of my mother having cancer, and informed by a probably destructive compulsion to regularly read about cancer on the Internet. *

If anyone newly diagnosed with cancer were to ask me what my biggest suggestion would be for them as they moved forward, I’d immediately say, “I AM SO GLAD YOU ASKED.” (I love giving advice and for some reason am also never prevailed upon) and then I’d say, “Get a second opinion if you can swing it. Maybe a third too just to be thorough.”

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D.C.

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In February of 2010, DC had its biggest month of snowfall in years. Almost three feet of snow turned the streets billowy white and silent. The grocery stores ran out of chicken and milk (these are apparently the first things to go in a crisis), creating a pleasing air of disruption and end-of-business-as-usual. My roommate Min Jung and I tramped happily down the middle of streets in the most snow she had ever seen, alone except for the occasional swoosh of a cross country skier whose moment had come.

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Chemo, Round One

Mom had her first and second chemotherapy appointments, and she gets next week off to try to recuperate. She’s back on the same chemotherapy regimen she did when she was first diagnosed (gemcitabine + cisplatin). The plan for her is to do 3 cycles of chemo (one cycle is 2 weeks on, 1 week off) and then get a CT scan to see what effect the chemo is having.

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Waiting/Carrying On

One of the hardest things for me over the past five years of my mother’s illness has been trying to figure out how to continue to live my life without giving too much space, in my life and in my brain, over to cancer. Obviously the IDEAL is to just sort of continue onward unaffected, pursuing my GOALS AND DREAMS and living my life to the fullest ETC ETC, like the imaginary daughter I am always unfavorably comparing myself to. Not doing that feels like letting cancer take away more time than it already will, i know that. Actual me is sort of just groping toward that goal, failing a lot of the time.

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Austin —> Alaska

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a good idea we had

Upon the expiration of our lease August 1st, my boyfriend Star and I decided we’d pack up our life and drive to Alaska to spend a few months with my mom. July 25th we stuffed only our absolute necessities (which in Star’s case included a sous vide machine, pressure cooker, and a vita-mix) & our french bulldog Bertie into our honda fit and started driving. It felt like 50% of the drive was Texas, but that’s just because Texas is an interminable flat hellscape. Eventually we did escape into New Mexico and then Colorado, Wyoming, and Montana. 50% of the drive actually was Canada.

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a good day

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The five year mark on cancer survival is a funny thing. It feels significant and yet it means nothing concrete. Because it’s used as a milestone in survival rates, sometimes people think it offers assurance. If i can just avoid getting sick again during the next five years, 3 years, 12 months, 12 days… I will finally and forever be free of this monster that has been stalking me. That isn’t how it works, though. Cancer can come back for you anytime, and you have to live your life as well as you can in spite of it.

And for my mom, who in the last five years has kept having to wrest herself free again and again, there is not even the shaky hope that time means safety. We are, instead, almost assured it will be back sometime, might be back already, in fact, and is just waiting to announce itself again, disrupt everything again, and take away any scraps of hard-fought, necessary, delusional normalcy we’ve managed to gather together since the last time.

One of the harder things to remember is that we are lucky there have been so many agains. It’s come back again 4 times. She’s staved it off again each time. Again means she’s still alive. I didn’t know it, 4 years and 10 months ago when she was diagnosed, but the survival rate for her stage of bile duct cancer has roughly a 6% 5-year survival rate. And so five years actually does mean something to us.  Making it to 5 years gives us no guarantees, no relief from the monster. But it means we got very, very lucky, and we’ve gotten time almost nobody in her position gets.

Today mom loaded up the casita camper we bought for her and headed to New Mexico. She’s always wanted to take an rv around and explore the US, but first single-mother-dom got in the way and then cancer threw itself in there, too. My mom has had to fight her entire life. She used to duct-tape her shoes so whatever money there was went to the things my brother and i needed. She jokes around with the anesthesiologist before she gets wheeled into surgery, every time. She is braver than I could ever imagine being capable of.

Watching her drive off, I felt a little like an anxious parent watching their child go off on their own for the first time, except that in my case i’m very hopeful she’ll join a commune, get a boyfriend with a motorcycle and experiment with soft drugs.

There have been a lot of rough days over the last almost five years, but this is one of the good ones.