Friday, December 30, 2011

State of my bod

Things are going pretty well for me, body-wise.

Here's the best thing: my hearing is back! Or at least my brain's re-wired and I can't tell the difference. Either way, it's so great to go out for dinner and not hear all of those echoes and reverberations. I can't even begin to describe how happy this makes me. Go nerves! (Now please re-wire so that all subway cars smell like chocolate.)

I'm tolerating the Lupron pretty well, besides a bit more anxiety and three or four hot flashes a day. Because I'm rocking the Lupron so much, my oncologist and I have decided to add a new drug, Zometa. This one may help keep my cancer from spreading, and will also strengthen my menopause-weakened bones. In a few weeks I'll get the 15-minute infusion.

Adding extra drugs isn't everyone's choice; I'm grateful that my oncologist is keen to work with patients' different attitudes towards treatment. I'll probably post more about this decision later.*

Here are some more improvements: my mental functions are coming back. I'm feeling more comfortable, cognitively, and I can read science-y books without exhaustion. My gallbladder is much better. A few other chemotastic aches are also fading. My left arm is doing very, very well; the repetitive strain surgery seems to have been a huge success.

This means it's time for more surgery!

No, seriously. I'm getting my repetitive strain fixed in my right arm on January third. Wish me luck.

In the short term, I've picked up my husband's cold. Sorry, little virus, but you're not equipped to last long in here.

*Blogging about this new drug in the context of my attitude towards drugs in general? That's zo meta.

Thursday, December 29, 2011


I've had a really wonderful past few weeks. I helped out at a snake show for a bunch of kids - watching their fear change to wonder as I gently patted enormous boa constrictors and milksnakes was pretty terrific. I fell in love with my husband about a billion times. I checked out some dinosaur skeletons with some great friends in the snowy north, ate french toast with a group of beautiful geniuses, held a christmas party in which we put as much icing and sugar on cookies as possible AND THEN ATE THEM, and spent a very long time with my wonderful sister and parents and enjoyed every moment. I feel luckier than 99% of the world.

And then today I woke up angry.

I don't want to rage and storm in front of people I love. I don't rage and storm in general. I'm not saying this is the best way to be; it's just a product of how I grew up.

But I need to get it out somewhere, so I'm going to vent to my blog.

Screw you cancer. Screw you for for hanging over my every moment with my loved ones. Screw you for worrying my husband. Screw you for ruining everyday sayings like "see you next year" or "when you're an old lady" or "as your career develops" or "wait 'till you see her when she's older".

Screw you for making my cancer patient friends bear absolutely massive amounts of pain, in silence, in their bedrooms behind perfectly ordinary-looking walls.

Screw you for conscripting us for your war, regardless of age or situation, and for randomly giving us easier or harder jobs, more or less cash, better or worse medical care.

Screw you for making it so hard for me to plan for the future.

Know what, you bastard? The last few weeks have been a big screw you to you. Forget life being a half-full cup. I'm just permanently holding the kettle over my cup, and so that the water is spilling all over the floor, and there are little hot chocolate marshmallows in the widening pool. I'm going to put as much as I can into the time you've given me, because it's the only thing I know how to do.

Tuesday, December 20, 2011


50/50 is a movie about a young guy who gets cancer. I saw it a couple of months ago, and I wanted to make sure I wrote a little review of it.

This movie is based on the filmmaker's actual experience with cancer (a sarcoma). His best friend is played by Seth Rogan, and his best friend really is Seth Rogan, so you get maximum accuracy.

Pros: This movie is bang-on in almost every single way. I was completely floored. Hair shaving, the misery of chemotherapy, the strange things people say, the humor and the pain, how doctors can't even bear to give you the news... watching this movie as a survivor was incredibly odd, and great. If you want to know what it's like to be young and have cancer, here it is.

Cons: This is a buddy movie. A very male buddy movie, with all the misogyny that this entails. All of the movie's women are either sexy, sexy and crazy, or mom. All of the doctors and patients are men. This was not my experience, though my cancer disproportionately hits women so in part it's the luck of the draw.

Also, the therapist in the story is a complete idiot, which was very disappointing to me - and to my therapist, who is a genius.

Overall, though, this movie is a really accurate picture of what it's like to get cancer young. It's all humor, physical suffering, panic, awkwardness, love and misery.

So, that's my brief review of a movie that's worth seeing. I give it four Lupron buttshots up!

Wednesday, December 14, 2011

New leaves

So, a few days ago I decided that I wanted to have some terrific, full days, wonky ear or no. Here's what I did.

I started one day with a guided nature hike that I found listed in a local calendar. I tromped over frosty leaves with a flock of other hardy folk while a naturalist helped me re-learn some winter woody plants. There were folk tales and dorky nature poems.

I went to a science and art lecture with a couple of good friends. It was funny, educational and terrific. Then we went out to a diner and I ate some eggs benedict that might trump all of the eggs benedicts of my past, as well as a chocolate and vanilla coconut milkshake that I'm still dreaming about. Mmmmmm.

I worked on projects, cared for my pets and generally puttered happily around the apartment.

This morning I met with my psychiatrist for a good chat, and then my husband and I spent time hanging out with a lovely friend who had just gone through a miserable portacath surgery (and who managed to be interesting and entertaining even immediately after said surgery, which is a pretty impressive feat).

Then we hopped in the car, because I had dinner plans with another friend -- and the other shoe dropped. WHAM, hello massive fatigue. My mom described post-treatment fatigue as frustratingly unpredictable, and she's right. My body seems game until it very suddenly reaches a limit. I had to cancel my dinner plans, and went home to sit blearily on the couch until it was time for bed.

Anyway, these are all ordinary things, and might be boring to read. But it feels incredible to spend my days doing things that remind me of who I am, and that have (almost) nothing to do with cancer. And this time I lasted a much longer time than usual before I collapsed; a day or two of rest and I'll be back in the saddle. But for now...

Saturday, December 10, 2011

What to say to the person who has cancer

Well, it's been over a week since my last post, and my hearing distortion hasn't diminished. I've managed to get out with friends, to go hiking, and even to spend time in a restaurant or two, but it's more exhausting than usual. I'm trying to keep calm - this could still go away. But it's very, very weird that an integral part of my perceptual system is on the fritz.

My onco-nurse has now assured me TWICE that it's not brain metastasis, which had me jumping for joy every time. And not just jumping, but cleaning the house, planning for the future, repotting the plant, spray-painting things so that they're color-coordinated with the decor in the bedroo- okay, maybe I'm feeling the steroids.

I've been meaning to write a post about how to interact with a friend who has cancer. A few people have asked for a post like this, and while I'm not an expert, I can offer a few tips based on my experiences. Here's a handy bullet-point list!

  • The most important thing I've learned is that you need to keep treating your friend like they're the same person they were before their cells went haywire. Cancer can threaten every single part of a person's identity, from big things like physical appearance, job, future, relationships, and emotional well-being, to little things like the sense of taste and amount of armpit hair. By talking and visiting, you help remind a cancer patient to be who they are.

  • Seriously, just talk. I'm sure people were worried about saying the right things with me; I worry about saying the right things with my friends who have cancer. But the overwhelming majority of these interactions have been loving, humorous, and right on the mark. So don't be afraid to be open and honest with your friend; I mean, what's the worst that could happen? (Cancer?)

  • Let your friend lead. Some people want to talk about their cancer in-depth; some people just want to joke around; some people want to share epiphanies (don't worry, the epiphany phase is transient). Don't feel like your friend needs to talk about every aspect, but make it clear that they can if they want (and if you're fine with it, because you have to take care of yourself, too).

  • Unless your friend asks for medical advice, and unless you're an oncologist, offering medical advice can make your friend's experience confusing. I guarantee that your friend already has a ginormous folder full of information that people spend years in medical school memorizing and understanding. I too have a massive urge to help when things go wrong, but it's easy to give a cancer patient too much info, or to be repetitive. Your friend is now an expert in something that he or she never really wanted to know about.

  • Don't tell your friend that having a positive attitude is a critical factor for their recovery. I'm hesitant to put this here because "Stay positive" is always said with such kindness and sincerity, and I appreciate hearing things like "Keep on truckin'!" and "You're kicking butt!". But urging someone to stay upbeat as a curative agent puts a lot of unfair pressure on a patient. As cancer doc and author Siddhartha Muhckerjee says,

    A woman with breast cancer already has her plate full, and you want to go and tell her that the reason you're not getting better is because you're not thinking positively? Put yourself in that woman's position and think what it feels like to be told your attitude is to blame for why you're not getting better... In a spiritual sense, a positive attitude may help you get through chemotherapy and surgery and radiation and what have you. But a positive mental attitude does not cure cancer – any more than a negative mental attitude causes cancer.

  • Try not to compare your friend's experience to the experience of someone you know who died. Many people survive cancer these days, and unless your friend is immediately terminal and wanting to discuss this, he or she is hoping to survive, too. Luckily I've only had strangers make this kind of comparison, but it was still upsetting. At one point a complete stranger sent me a facebook message out of the blue when he saw a picture of my bald head on someone else's facebook page. He wrote "My friend had cancer and died from it, and it was awful, so I hate cancer, so I'm on your side!" At the time I was deeply sick and unable to reply, but I really, really wish I could've sent vomit in a facebook message.

  • Little things mean so much. Postcards, presents, company during chemo, patience when side effects interrupt plans to hang out. These things helped so so much.

  • But don't worry or overthink things; pretty much just talk to your friend and you are going to do fine. You might make some mistakes, but so will your friend. Your cancer patient friend knows that cancer is scary for other people, too, and appreciates your bravery, patience, love, humor and presence more than you can know.
There's so much more I could write, but I'm tired and there's some chocolate-flavored tea calling my name in dulcet (but distorted) tones. 

Friday, December 2, 2011

... The Aristocrats!

I went to the ear specialist today to check on the hearing distortion in my right ear. He did a bunch of little tests. The most bizarre: he rang some tuning forks next to each of my ears in turn, and tones sounded several notes up in my left ear compared to my right.

The diagnosis at present is sudden hearing loss. It seems to be affecting the mid-tones of my hearing, and it's likely due to a completely out-of-the-blue viral infection. It's relatively mild as sudden hearing loss goes, because I haven't gone deaf; I'm just getting lots of garbled information through the nerves.

There's no medication to take except steroids, which I'm already on. They're already pushing me to the edge of panic and giving me tons of manic energy. The problem will probably resolve on its own, though my hearing may have been permanently damaged; the doctor didn't want to speculate. I suspect that my diminished immune system following treatment is partly to blame.

I'm feeling jumpy, confused, wired, sad, okay, tired. It's very disorienting to be out in public because I can hear a lot of rushing and feedback, and my own voice sounds totally different. If I'm like this forever, it'll be pretty difficult. I'm relieved, though, because it looks like this probably isn't something more serious.

Sometimes I feel like all of these problems are leading up to one enormous punchline.