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.

Angry

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.

50/50

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!

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...

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. 

... 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.

A bright spot

Today I learned that there's a japanese dating game in which you play the part of the only human at an all-pigeon boarding school. Yes, you're hitting on pigeons. As a human. And they play sports.

Don't worry, baby, it's coo'.

Hear me out

I'm still having trouble hearing in one ear, and the doctor this morning couldn't see anything wrong when she looked inside, which suggests a deeper issue. I've got an appointment with a specialist back home, and I've dropped a line to my oncologist, who doesn't think it's consistent with symptoms of metastasis (always a concern).

Sigh. Every little problem could signify that we've lost the game. My body's so worn out that there are a lot of these little problems cropping up.

It's too weird and painful to talk with folks vocally at the moment, but I'm thinking of you, bridesmaid with exciting news, and you, old close friend with too many stressful things in your life.

Trippy

I'm in a hippy cafe in North Carolina. I have a busted ear.

My husband and I were feeling very optimistic lately because I was doing so well, so we decided to do one of our favorite things - take a road trip somewhere new. I love traveling, and it lets me participate in my recent favorite hobby...

Salamanders. So, there are hundreds of different kinds of salamanders (you know, frogs with tails). I track down new ones and take pictures of them. It's called herping, especially when combined with snake-huntin', and it's a mix of geocaching and Pokemon. But slimier. I'm really not sure why I love it so much.

With salamanders in mind, we made our way to Georgia to meet a good friend. We climbed into a muddy cave, hiked up a hill in a rainstorm, and generally roughed it. Our reward for getting mud-covered and occasionally drenched with freezing streams of water was discovering four new (to me) kinds of salamanders.

One was like a slender orange dragon, and we found it in a cave, gazing out from a crack with its big amber eyes. One was tiny and silvery and crawling across a cave floor. One was multicolored and peered up at me from wet leaves. And one, a very special and rare salamander, was clinging to a lichen-covered rock, its back a shimmery mix of green and black. Amazing.

Then we retired to a hotel. We were planning on driving home the next day, but all of the elevation changes seemed to have mucked up one of my ears. It felt full, and everything sounded off. It was worse the next morning, so we declared a day of rest.

We took a brief trip to a nearby aquarium, curling up in an alcove while sharks sailed overhead, separated from us by just a little bit of glass. I touched a sturgeon (for the very first time!). But despite the fishy rest, my ear still felt wrong. Now we're on the road, and my ear is still having problems; it's not painful, but something is definitely wrong, judging by how the hippy music in this funky cafe is being hopelessly distorted in one ear, but merely boring the crap out of the other one.

I called my primary care physician, and she told me to get checked out before I fly home, so tomorrow I see a local doctor. Argh. Part of me is so adventurous (the brain part), and the rest of me is so darn fragile, especially after all that grueling treatment - one doctor told me I temporarily have the body of a 65-year-old, and I'm not sure if that's more insulting to me or to 65-year-olds.

I wish I knew how to resolve this tension. Maybe more sharks would help.

Mixed salad

Some things that have happened in the last couple of days:

• I found that I'm not qualified for a clinical trial because my cancer was too severe when diagnosed. No new information, but it was still difficult to hear.
• I got my second Lupron shot, and now have an enormous butt bruise.
• I flew to visit my husband's family for thanksgiving. I ate turkey and chocolate pecan pie, joked around with my new brothers, toasted my new mom-in-law and was toasted as the best (if only) daughter-in-law in the family.

I have a difficult time describing these days, which are pretty much my worst (potential death) and my best (warmth, love and family). The best way I can describe them is 'salad'.

It's like I'm forced to eat this very big salad, every single piece of it. There are a lot of wonderful bits of blue cheese and pear and olive and walnut in my salad, but every now and then I find an incredibly wilty piece of radicchio, or a slug.

Whew

I'm having HOT FLASHES, check it and see!
Feels like a fever of a hundred and three.
Come on, Lupron, I just put on these pants.
I've got... hot flashes! HOT FLASHES!

Luproncalia, and how to stop a cancer

I keep meaning to post long updates, but I have a bad case of Lupron brain. I feel like my head's full of cotton that has been soaked in gloom-ahol. It's been difficult for me to stay on task.

I'm struggling with the post-treatment period. I'm mostly doing well, but it's a time of such change and uncertainty that I'm often not sure how to plan my day. (Lupron wants me to sleep or stumble around the house like a zombie. I try not to listen to Lupron, but it's very persuasive.)  One thing that helps structure my time is to take a few actions that reduce the risk of my cancer returning.

What are these actions? Well, teasing out the right activities from all the myths and bad advice is very hard. There are more opinions about how to stop cancer than there are seconds in a day. It's really, really overwhelming, especially as a new patient; I've often felt really guilty for not keeping up with every piece of advice I stumbled across, which is goofy because much of this advice is unsubstantiated and just causes more stress. Even scarier: some of this advice is dangerous. One guy urges taking massive doses of vitamin C, for example, which can make radiation therapy less effective. And then there are the folks who poisoned themselves by eating apricot pits. Oy.

So, here are the things I've decided to do.

1. I met with a cancer center nutritionist early on. She helped me sort through the many, many food myths and facts. Then she basically advocated a heart-healthy diet. I was already eating pretty well (many veggies, a few farmers' market meats), so I upped my veggies, reduced red meat, started eating more leafy greens and whole grains and made a few other small changes. This might not do much to reduce the risk of cancer recurrence; studies on diet and cancer are few and messy. It's good for my bod, though, so no harm there, and it's freaking delicious.

2. I take my Tamoxifen and bend over for my Lupron buttshots.

3. I exercise, because holy crow, this is one exciting emerging area of cancer research. Some studies put the benefits of daily exercise at a 54% reduction in cancer recurrence risk. That's better than chemo. I walk every day, and try to fit in half an hour of elliptical most days a week, because that's exactly what the ladies did in the studies and I'm a geek like that.

After that, I just have to trust in luck. It takes a lot of bravery, and some cookies and walks on the beach with my sweet man.

Recovering

This'll be a short post, since I'm typing one-handed. The surgery went well. My arm's recovering brilliantly and soon I'll get to try it out. I'm so deeply tired, and feeling slow and confused, but getting better every day.

I have so many pithy (read: long) posts to make about cancer, but for now this is as much as I can write. Stay tuned!

Posted from pre-op

Got my fancy socks and my heated blanket. Arm surgery time!

On the way to the hospital a few drivers cut us off without signaling. Every time it happened I wanted to roll down the window and yell You just cut off a CANCER PATIENT, you jerk. Of course, there's a reasonable chance that some of them had cancer, too. These... are the things I think when I don't get to eat or drink past 12am.

My nurse looks like the princess from Enchanted.

Mend (to fix, to repair)

If your hospital gives you a free whoopie pie, then it counts as healthy, right?

Okay, I'm still limiting my online activity to spare my arms, but I wanted to write something because people keep sending me sweet emails and it's so hard to keep myself from replying. I'm going to type this very slowly.

Here's some background: I've had repetitive strain issues since 2005, when a combination of constant guitar-playing and geeking out caused two years of pain in my ulnar nerves (along with the 'carpal tunnel nerve', the ulnar nerve is one of the main nerves in the arm). I stopped guitar cold turkey and modified my activities enough to limit the pain to a few months a year.

Although I got much better - well enough to pretend I was fine - I never 'recovered'. I spent my first internship out of grad school using the mouse with my foot, and speaking all of my documents using voice recognition software. Many of the things I'd trained to do have been off-limits.

Besides the misery of the pain, I feel so unproductive and useless every time my arms flare up and 'remind' me that I have a problem. Nothing makes me happier than feeling buried in a work project, and all of my work involves my arms; sadly, soccer is not one of my projects.

The whole cancer thing, though, kinda pushed this issue to the side for a while. I was blindsided when the pain returned two weeks ago. (I'm blindsided every time it returns. Brains are pretty dumb adaptable.)

So, on Monday I saw a surgeon.

On Tuesday of next week, he'll cut into one arm to try and fix it.

I'll be recovering for a few weeks, so no blogging for me, probably. If all goes well, you're next, other arm! LET THIS BE A WARNING TO YOU.

I'm, uh, 99% terrified. 1% whoopie pie, but mostly terrified. Nerve surgery is messy and painful. And this Friday I get my Lupron shot. I'm also terrified of that. Both of these decisions have been so hard; I'm a ball of nerves and I hope I'm doing the right thing. I just want to be able to get back to feeling like I'm contributing to the world in the small ways I know how, and these decisions might get me there, or stop me.

A few positive bullets to round out this post:

• I've had warm nights sitting and watching movies and drinking tea. I'm getting better at doing nothing and just breathing.
• My husband is the most wonderful person.
• My mammogram today was clear.
• I've had some phone and g+ chatting with some inspirational ladies (I'm thinking of you, C and N).
• Halloween is coming up, and I'm planning something amazing based on my post-chemo hairstyle.
• Free whoopie pie.

Brief update

Hey, this is saveandcontinue's husband. She's having some bad repetitive strain in her arms and can't reply to your emails or post right now. She hopes to be back in shape soon!

Decisions

My oncologist confirmed that I seem to be doing fine so far. Then she gave me a choice.

She offered me a drug called lupron. It suppresses the ovaries and therefore may reduce the spread of breast cancer that's driven by hormones. My oncologist was very clear: studies are pending. Adding lupron to breast cancer treatment is standard in Europe, but not in the US. If my cancer were a little more vicious, she would have pushed it more, but she honestly couldn't decide with me. So, to lupron or not to lupron?

Cons:
-menopause-like symptoms
-pain, moodiness
-loss of bone density
-heart disease risk
-cognitive difficulties

Pros:
-my chemo didn't work well, so lupron might help me stay alive.

My dad and I had a long talk about it. He jumped on the cognitive difficulties side effect, just like I did; when I heard that I might have trouble thinking, I felt pretty upset. I'm from a family of academics and nerds, so cognitive impairment really scares me.

Anyway, I'm going to do the lupron. But I'm not happy about it; I'm tired and angry and if anyone says something about how cancer is a life-changing and life-affirming journey I'm going to flail at them with my incredibly tiny fists.

Checkup

Tomorrow is my first checkup since treatment ended. This means I'm feeling a lot of fear.

In the past few weeks I've gone hiking in search of fall, eaten apple donuts and reveled in sunset-colored mums. I stayed awake through all of my husband's birthday party. I went on a great field walk and found a dozen baby snakes. Mostly I've been sick, but the kickass days are slowly outnumbering the bad.

I need to sleep.

Sick

I've had a bad cold all week. It's making me feel pretty uncomfortable. Typing this seems to be taking a long time.

I keep typing jokes that are probably really terrible, and then erasing them. Back to the couch!

Poked and prodded

The surgery yesterday went well. The IV placement didn't - I have bruises from many failed attempts - but after that it was smooth sailing. Sort of.

I had a consult with an anaesthesiologist about my sedation issues, and elected to go through it with just local anaesthetic and some benzos (a class of anti-anxiety drugs). Hardcore.

So once again I got under the sheet, and felt all manner of bizarre things. Sometimes the local failed, and I asked for more. A few times I asked for a bit more benzo and drifted into a warm fuzzy time. The local anaesthetic really failed during 'closing', and I felt a bunch of the stitching, but it really wasn't so bad - no worse than getting a mild injection. A nurse patted my head. All of the docs were incredibly nice and they listened to everything I said.

On the whole, it was nowhere near the horrible experience of port placement. I was pretty calm and comfortable. Of course, now I hurt like gangbusters.

This entry is pretty disjointed. I think I'm still woozy. Doop doop doop

Deported

Tomorrow I'm having surgery to remove my portacath, the chemo delivery device that was implanted at my collarbone to spare my poor veins from dissolving. My port (I named her Portia) looks an awful lot like the one in this hot guy's neck:

THIS IS NOT ME. THIS IS A HOT GUY I FOUND ON THE INTERNET.

A portacath has a little round bulb on the chest, and a tube running up to the neck. If my neck looks SUPER RIPPED in some of my wedding photos, my port is to blame.

Getting the port installed was problematic. The conscious sedation failed and I had a paradoxical reaction that rendered me INCREDIBLY AWAKE. This was why I was able to hear the doctor yell at the nurse for flooding my system with an antibiotic I'm allergic to, despite asking me about my allergies mere moments before.

So, I'm a little anxious about this surgery. It will be #5 since I was diagnosed. Luckily, I'm getting it done at my shiny new hospital, so hopefully my transition from bionic human to non-bionic human will be smooth.

And now for a message from our sponsors

Here are some things that help me keep sailing. They're small things, but a day filled with small good things can be a really good day.

Jasmine silver needle tea. You can get some good stuff here. Just breathe in the steam and time stops.

Filthy Farmgirl soap. I've never had soap that smells this good before; it comes in a million flavors, each one more insanely nice-smelling than the last one, and covered in bits of spices and oatmeal and other tasty things.

Adora calcium tablets. My doc wants me to take calcium supplements, and they always gave me awful heartburn. Adora dark chocolate calcium with vitamin D was a revelation for me. The tablets taste exactly like dark chocolate, and melt slowly in your mouth just like it should. You have to remember to not eat all of them, or you'll die (happily?) of a calcium overdose.

Jeb Corliss grinding the crack. I watch this ridiculously bitching video too often. Well, I came extremely close on that one -- yes I did.

Scr$w F&ck Cancer

This TEDx talk, by Yael Cohen of the F-ck Cancer charity, made me pretty dang annoyed.

Yael's case seems air-tight at first. Here it is: her mom got cancer, and she learned that 90% of cancers are curable when caught early, so she launched a movement to help "cure" cancer by making us all find our cancers early. Sounds great, right?

Her narrative is pretty seductive. She says that people die from cancer because they're part of an apathetic generation (or generations). They often don't bother to look for cancer until it's too late. Yael uses the word "apathy" so many times, and so angrily, that you might figure it'd make a gal like me a touch sensitive about her later-stage cancer discovery.

And it does. So here's why her argument is wrong.

We can't stop all cancer in its tracks through early detection because (drumroll please)...

Cancer of the everywhere
Not to freak you all out, but did you can get cancer in just about every single part of your body? (I try not to say these things at parties.) I've met people with connective tissue, bone, kidney, blood, breast, ovarian, testicular, gut, muscle, uterine, and skin cancer, to name a few. You can't prevent every cancer because you can't check every single part of you all the time. This way lies madness, and in many cases it's simply impossible to check all of these places accurately, because of...

The trouble with cancer scans
Ok, so why don't we all just get total-body scans using those fancy machines at the cancer doctor's office? Welp, the best scans are insanely expensive, they blast you with enough cancer-causing radiation that frequent scanning would be counterproductive, and they tend to turn up a ridiculous number of of false positives. There is no way to scan specifically for cancer. There are just lots of ways to find cells that are dividing quickly, or forming a lump, which not all cancers do.

Mammograms, for example, catch lots of breast cancers, but they miss them, too, particularly in young women (who have denser breasts - yep, my breast was dense, poor little fellow). There's almost no way to catch many kinds of ovarian cancer until it's quite late-stage. The technology will get better, but it's not there yet.

Small lump = early detection?
But say your type of cancer is an easy-to-spot kind, and it's nothing but a small lump. Did you succeed in catching it "early"? Well, that's a matter of luck.

In my case, the fact that my lump was teeny (just a little wider than a penny) didn't mean that I caught it "early". My cancer had already spread to a bunch of nearby lymph nodes, pushing me to stage III. I've heard of women with .6cm tumors that have already spread to their bones. Smaller lumps are more likely to be curable, but that's not a guarantee.

Doctor error
Most of my young friends with cancer have a story that goes like this: "I went to the doctor and shared my concerns, but my doctor said I was too young for cancer." Cancer is definitely unlikely in young folks, and not all doctors know the signs. Sometimes a patient's best efforts don't lead to a correct diagnosis until it's too late.

A refined "cure"
So, sadly, as with many lectures of this nature -- lectures that seem so challenging and yet so obvious that you feel the satisfying sense of cutting through the "crap" to get to an epiphany -- this one's too good to be true. Yael's a passionate and brilliant speaker, and I'm sure she's a devoted daughter. But she's not a patient and she's not an oncologist.

A better, but less-catchy, way to reframe her speech is: early detection is possible in the case of some cancers. When caught early, many cancers are also much more curable. For example, breast cancer is 100% curable when caught at stage 0 (harder to scan for or check for), and it's 0% curable at stage 4 (when the cancer's very visible to scans). You're more likely to get a more curable cancer if your tumor's smaller or your cancer's more localized. It's not a guarantee, but it ups your likelihood.

So, go to the doctor. Get every single cancer screening that's reasonable and feasible for someone in your age group. If you find a lump or if something seems wrong, bug your doctor, and bug him/her again. Do the best you can; if you never see a doctor, there is no way your cancer could possibly get diagnosed at an early stage.

But if you're diagnosed with a later-stage cancer, for f&ck's sake, don't blame your own "apathy". And if your friend gets a later-stage cancer, for f&ck's sake don't call them "apathetic". It's not just insulting - it's deeply untrue.

One of my good friends is fighting a rare, metastatic cancer of the smooth muscle. She's a doctor, and very young; there is nothing she could have done to find her cancer early or to stop it. I want to hijack Yael's applause at the end of her talk and redirect it at my brave and strong f&cking friend.

(If you really want an adorably irreverent cancer charity, may I suggest Stupid Cancer instead? 100%-cancer-patient-approved)

Tightrope

I've been feeling physically good, so yesterday I went for a long walk. I popped into a hospital to use the bathroom -- hospitals have free bathrooms, and it's safe so long as you use a lot of hand sanitizer. I walked through the imposing, chilly halls, and suddenly I realized that I wanted to stay there. The hospital is where things make sense.

Outside, I don't know what to do. I can plan for 50 years or much fewer. Should I be planning for somewhere in between? That doesn't make sense. There are things I've been considering that don't apply any more, like getting a PhD right now or working a ton of hours to save money for later. It's going to take some adjustment.




It was a gorgeous sunny day. I walked familiar roads, revelled in feeling pain-free and healthy, and ate some great food. I decided to pick up that mental rubik's cube later.

Surviving

It's been a while since I've updated my blog! I got married, and it was a wedding so good, and buoyed by the love and help of so many folks, that not even the damn hurricane could stop it. I'll post more about this when I've got a bit more time.

Now I'm on my honeymoon. I've been hiking so much. I'm really pushing my body and feeling steadily better every day.

Being a survivor is emotionally... interesting. I have awful dreams. But then I forget that there's anything wrong, and wonder why I got my hair cut so short or why my right 'boob' seems to be numb.

I'm looking forward to coming home. There won't be a last-minute wedding planned under duress. I won't have to get any more chemo. I'll have free time. I plan on drinking a lot of tea.

Chaos

Everything is suddenly exploding at once. The funeral, friends in trouble, the stress of post-cancer, wedding madness... I can't even begin to write about it, but it's making me very slow to reply to emails, so I apologize for that. You don't even want to know the terrible soppy music I'm listening to right now.

As difficult as things have been, I've also had so many friends help out in the past few days, even though I'm dreadful at asking for help. We've even got a friend staying with us who is helping keep everything as even-keeled as possible. And the woman who runs the wedding venue is donating some of the food and alcohol because she has people close to her who've died of cancer. The math works out to lucky, really it does. Rargh.

Off to visit my friend who is in the hospital. Please think warm thoughts for a woman you've never met who is strong and smart and doesn't deserve this.

Goodbye

My grandpa passed away this afternoon, on his 90th birthday.

His funeral is this weekend. It's in Canada. My wedding's next weekend, so things are really, really crazy. But I can't imagine missing this chance to honor him.

I'm trying to figure out how I feel, but mostly I just feel tired and beaten down.

Chemotherapy

I wanted to write a bit about what chemotherapy was like, for people who are curious. This post is a whole season in one entry, so it's long!

Chemo is basically a way to bathe most of your insides in chemicals that target fast-growing cells, which includes any cancer cells that might not have been chopped out. Hair, nails, stomach and other parts of the body are also made of fast-growing tissue, so they're killed too. Slower-growing parts of the body also sustain heavy damage - some of it long-term. This stuff is powerful.*

Because I'm young and because my cancer was still potentially beatable, I had the meanest chemo, delivered as often as possible. I had 8 infusions (or injections of drug), one every two weeks. The only way I could get chemo this regularly was by artificially boosting my immune system, so I also got a white blood cell booster drug that tricked my body into thinking I had E. coli.

Gettin' the chemo

I got chemo in 2-to-4-hours-long sessions at the cancer center. I'd sit back and the drugs would be pumped through my portacath (an implanted device that feeds drugs into a major blood vessel in my neck, and helps avoid collapsed and burned veins). I'd also receive drugs that would help my body deal with the chemo. These included steroids, things that block allergic reactions, etc.

Chemo infusions were pretty dull. I often played scrabble, and my ability to come up with words would diminish as time went on.

The first few days would be pretty okay, but then the effects of all that poison would start to pop up.

The good

Some things weren't nearly as bad as I'd expected. Five different anti-nausea drugs took the edge off of any potential nausea. And the hair loss was just sort of funny - I had an incredibly good wig (sometimes people even told me they adored my new hair cut).

The bad

Here's the part I wasn't expecting. My mom described chemo with "What fresh hell is this?" Every day I woke up with some new, awful side-effect. Here are a few: I had a half-dozen cankers simultaneously appear on my tongue, detached fingernails, eyes so runny that I had trouble seeing on windy days, nerve pain, cognitive difficulties, hemorrhoids (I got a fun preview of being old), hot flashes, and extreme food pickiness - cook for someone on chemo over a period of months and you'll slowly go mad.

Each one of these side effects would have been pretty dreadful on its own. Together, they made me feel so awful I often couldn't sleep. I took 2-3 baths a day to reduce pain and relax muscles. It all took a toll on my emotional health, which was already reeling from the initial diagnosis.

I coped by trying to shut down any thoughts of the future, which was pretty hard for me because I've always been keen on causes and projects. I lived from relaxation exercise to nap to healthy smoothie, from pill to pill. I stopped reading my favorite books (science nonfiction) because it was just too hard, somehow, to think about the outside world, and because chemotherapy temporarily damages memory and other mental functions. I read the mushiest, goofiest fiction and watched all of Degrassi High.

This became my chemo theme song. The lyrics were creepily accurate, and it fit the lost, dizzy emotions I felt most of the time:

The ugly

Nope, the grossest side effects are for my enjoyment only. Lucky you!

The good (again)
So, chemo was probably the most difficult four months I've had. But it could have been much worse. My collection of side effects was relatively mild compared to some people's experiences.

Also, there were good moments. My partner proposed. My family visited and we had an incredible Christmas. There was a lot of cuddling and watching movies or being read to. I went bird-watching almost every day, even if all I could do was shuffle a block or so and then go home. On my good days I felt almost 100%, and there were even one or two parties, hangouts and snowy hikes.

Oh, and dancing to this song:


I have so much gratitude for my friends, who stuck by me during this difficult time, weathered my ups and downs and helped me find joy in the good days. I had a huge display in my dining room of cards and gifts, and it helped make an incredibly isolating experience much less isolating (thank you, thank you, thank you).

The end of chemo was bizarre. It should have been a celebratory time, maybe, but it didn't feel like one. My nails were still falling out, as were my eyebrows and lashes. My gallbladder was damaged. My skin didn't feel like mine, and my weight was low. But I began to recover, and every day I felt a little bit more like myself.

I did it. I still can't believe it's over, and it's been five months.

So, that was chemo for me.

*Lest anyone think that plant alternatives would be less toxic, be aware that most of my drugs came from plants. One drug in particular was derived from the lowly yew tree, which I now assume is a tremendous jerk of a conifer.

Help for a breast cancer man

On Saturday I wrote about a young guy who is being denied health care coverage because he's a male breast cancer patient. His name is Raymond.

I called Raymond's patient advocate, Susan, at the Charleston SC Cancer Center. She's a really warm, caring person, and she gave me some names of people to contact about his case. So, if you'd like to help Raymond, you can send an email to:

1. The President Pro Tempore of the South Carolina Legislature, Glenn McConnell. You can send him an email using this handy form. EDIT: The form's not working, so please email his secretary at beckiegunter@scsenate.gov.
2. The Senior US Senator from South Carolina, Lindsey Graham. Here's his email form.
3. South Carolina Representative Tim Scott. Unfortunately, Tim doesn't allow people who are not from South Carolina to use his email form. But you can give him a call.

Changing the situation politically is going to be (to put it mildly) an uphill battle. So, if you'd like to take more immediate steps, you can call Raymond's patient advocate Susan Appelbaum at the Charleston Cancer Center at 843-876-1353 or 843-819-0171. She's happy to have her contact info printed publicly.

Raymond and I were both diagnosed in our twenties, we both have only one sibling, and we both have moms who love the crap out of us. I consider it a personal act of help to me if you can give some help to him.

NSFW

After that last post, I need a chaser.



There's a lot of spectacular hair in this video for my budding headfuzz to emulate.

Coverage

This video made me very sad tonight. It's been floating around under various labels that amount to "Breast cancer patient denied health care because he's a man".

A few months before I was diagnosed, I was denied health care. I was working a great job - a government job - but I wasn't eligible for job-related health care because I was an intern. So, I applied to the local provider. They denied me coverage because of a few small health issues like mild asthma.

I moved after the job was over, and I was able to get health care at my new location, where the rules were different. I immediately, dutifully went for a checkup and my doc found my cancer.

Raymond, the man in that video, isn't being denied health care because he's a man. He's being denied health care because of a deeply broken American health care system.

Some of the comments on the video insist this guy should get more jobs - as if working multiple jobs were even an option when you're going through chemo, a uniquely physically devastating marathon.

I've met cancer patients who are fitness enthusiasts and couch potatoes, health nuts and partiers, 19 years old and 51. There is no personal culpability here. No 26-year-old should have to plan his life around the expectation that he'll get this disease. Cancer hits like a bolt from the blue and it doesn't give a crap how many jobs you have.

And when you can't do that... well, you know the rest

I've been holding off on writing this post because I don't want to be obnoxiously mushy. But I need to give praise where it's due.

My fiance has been my caregiver since I was diagnosed in October. I don't want to say he's my only caregiver, since my parents and close friends have taken on innumerable (often unpleasant) tasks. But many of them are out of town, so they can't be here all the time -- my man's been the main caregiver throughout.

He held me when I first heard the news, and all I could do was cry and make hysterical jokes and say "how the fuck could this happen". He came to every appointment, and trembled with me while we waited for test results. He worked his way through scientific papers and books. He held me at 4am when things were most grim. He played scrabble and kept me company during chemo sessions. He helped me administer some of the most disgusting remedies for disgusting side effects, which were multitudinous and varied.

And that doesn't even begin to describe what he did. Early on I told him that I was determined to squeeze every possible good experience out of the next few months, and so:

• He set up a tent in the living room one day, and put on nature documentaries, so we could pretend we were camping.
• He got so many terrible movies and comedy sketches... Airplane, Ron White, poor boy even watched Glee with me.
• He took me hiking and snake-hunting when I had breaks in treatment.
• He got me a table so I could eat breakfast in bed, and a hotel room so I could celebrate the chemo mid-way mark.
• He danced with me when I was up for dancing.
• He drove me through nature preserves when I wasn't up to walking.

He treated the loss of my breast with total love and adoration for my poor body (hey, my butt's always been cuter, anyway). He reached out for help when he needed it, and found an incredible social worker, which made me so deeply proud of his strength. Oh yeah, and he did all of this while working his ass off at his job.

Cancer is such a complex and personal thing to suffer, yet most of the time I felt like my partner was experiencing everything along with me. But there was one huge difference (ok, besides the total lack of boob) -- he could have left at any time. Just walked away, and the cancer would have stayed put. Early on my cancer story I deeply wanted him to. This is a pretty common thing, I hear -- feeling guilty that you're somehow 'doing this' to the people you love, and wanting to spare them the pain.

But he didn't walk away. And in December, he asked me to marry him.

I'm going to be hopelessly bawling when I'm giving my vows. And I'm not much of a crier. I imagine that the officiant will be all "Do you take this man..." and I'll be like "I d-boohooooohoooooohoohoo" and the ceremony will last hours. Maybe I can just write it on a piece of cardstock and hold it up.

Milestone

Monday was my last day of active treatment. As of now, I'm a cancer survivor in the official textbook sense.

It was a bit anticlimactic, just like the end of chemo. It won't really feel like an ending until I'm over the most serious side effects. I'm still deeply fatigued. Worse, I have massive deep burns on my side, and a complicated routine of bandaging the burns twice a day (luckily I don't have any nerves in the burned spots, so I'm not feeling much pain). These things should sort themselves out in a week or two.

Tonight I went to a hacker space and built my first circuit for an ultra-secret wedding project. I soldered for the first time. My first few soldering attempts were pretty hilarious, but after a while I got the hang of it, thanks to a super-patient friend. Building stuff, eating snacks, making bad puns, and learning some new things - I felt like myself again, and I forgot about cancer all night.

It was hard to keep learning things during treatment. I felt like pulling away from the world. Everything was so intense, in every possible way. Now I'm very tentatively reaching out again.

Worn out

The radiation fatigue has hit me like a ton of bricks. I've spent the last week either sleeping or struggling so hard to stay awake. I have a whole bunch of things I want to write about - relationships, chemo, food - but I'm just too beat.

A couple of people have asked me what radiation is like, so here's a brief rundown. I walk in to a great big room, lie down on a table, and stretch my arms up. A bunch of techs make small talk with me while they adjust a million tiny parts of the enormous radiation machine. Then they leave the room, and a huge device moves around me, painlessly zapping me. I rock out (motionlessly) to whatever CD they have on, which lately has been... Celine Dion. A few minutes later they come back in and I'm ready to leave.

For the rest of the day I fight to stay awake. I struggle to be coherent in conversations, and to remember to take my pills. I chug through wedding planning tasks as best I can. On rare occasions I go and hang out with friends for as long as I'm able.

My rad onc says that the fatigue should go away in the next couple of weeks. I sure hope so, because there's a lot I'm supposed to be ... supposed to be doing... I... Zzzz

Breasts and femininity

Recently, a friend of mine was complaining about breast cancer awareness event posters that feature ladies with huge boobs. I've seen a few of them around - they usually show some kind of antigravity-boobed pinup gal - and they're definitely disconcerting in a way they wouldn't have been before I had my breast surgeries.

As much as I'd hate to frown on anything that brings in more money for cancer research, could I gently ask that we stop trying to 'save the boobs', when cancer leaves most of us with scars, or one boob gone, or both boobs gone? Or are we only trying to save the boobs that are still in their original pristine state? I'd argue that what we're trying to save is the ladies.

-via dirtyforeplay

Tired

I'm getting more and more fatigued from the radiation. My skin is now blackened in about a 1 ft x 1 ft square where my breast used to be. It's itchy as hell.

The hot flashes have started. They make it hard to remember that I'm only 30. I'm having a lot of trouble sleeping enough, because I get incredibly toasty in the middle of the night.

Today I finally got my foot boot off. The podiatrist thinks that I might now have a neuroma in my foot, which is permanent but not especially terrible. On the way home, we sang M-m-m-my Neuroma. Ooh you make it hard to run, hard to run. They say you won't get better with TIME, neuroma.

Happy

I was going through our wedding RSVPs today and updating our charts. We're packing as many people as we can into the wedding venue, and there are still so many people I wish I could have invited.

But I had a moment of shock today when I realized that everyone who could have possibly RSVP'd yes so far has said yes. It's a last-minute wedding planned during treatment and held in an inconvenient location, and pretty much everyone is coming. Moreover, they're helping out with so many things.

Part of our idea in having a wedding was to help me see a lot of people who I haven't been able to visit during treatment... to hug people I love, celebrate being alive and have a blowout after months of sequestered misery and pill-poppin'.

I'm amazed and grateful that it's coming together this way. Folks, I hope you are prepared to party rather hard.

Tamoxifun

After I got back from my vacation I realized that I was feeling unusually anxious. The feeling built over the next few days, but I figured I was just upset because of my grandpa, the wedding planning and, yeah, the good old big C. I had sudden moments of tears that ended just as quickly, which is unusual because I'm not much of a crier. And then there was the insomnia, leaving me dizzy and muddled.

I visited my social worker yesterday, and she told me that she thinks I'm feeling the effects of tamoxifen, the estrogen-blocking drug I'll be taking for the next five years.

I'm not happy about the loss of what was a very pleasant period of peace and calm. The next step is to talk with my psychiatrist about switching antidepressants and generally managing the symptoms.

Oh, and I'm also keen on making sure that my newfound loss of inner peace doesn't turn me into a bridezilla. Maybe I can get it all out of my system at once by running through Filene's Basement looking for deals and screaming TAMOXIFENNNNNN

Grandpa

My grandfather is in hospice care because his recently-diagnosed cancer is progressing quickly.

My mom, a 7+ year cancer survivor herself, is now in the unfortunate spot of navigating between two generations of cancer patients. A year ago there was almost no cancer in my family. I can't imagine how hard this is for my mom, but she's an incredibly tough person, so patient and so caring.

My grandpa is brilliant, entertaining and just plain classy. He lived 89 years without suffering from any major health issues, despite enduring a serious explosion on a ship during the Second World War. (He was a medical doctor at the time, even though he was only 21, and the explosion cost him part of his hearing.)

My grandpa grew up in a small town and attended a one-room schoolhouse. He drove to get his learner's permit, which earned him an automatic pass.

Years ago, my grandpa, who was Scottish, brought me to a Scottish festival. It was quirky, and I think he might have been worried that I wasn't having fun. But there's something brilliant about seeing that many bagpipers at once. And my youthful eyes were pretty thrilled at the sight of my first haggis. Ewwwwww.

My grandpa is amazing. My mom's amazing. We've all lived good lives in spite of the the relentless mutations and divisions of our cells. I wish there could be something about that on our pathology charts.

Aaaaaah

Tonight was a momentous night in the life of any young woman: tonight I truly panicked about the wedding for the very first time.

I remember the blissful days when we decided to get married after radiation. Oh, those were good days. The wedding would be months away, and we knew it would be a wonderful cap to a difficult year.

Such fools were we.

It turns out that planning an enormous party when you're sidelined by radiation fatigue is kind of difficult. I've still not completely cognitively recovered, and I'm petrified that I'll get to the venue and realize that I forgot my clothes, or that I invited a flock of gazelles instead of friends.

Everyone is being very gentle about our wedding, and I'm grateful, because it's limping along as much as I am.

Vacation

My fiance's family was having a get-together on the beach this past weekend, and I decided to drag my exhausted, busted-footed self down there. But I had one serious problem: the only way to make it back in time for my radiation treatments was by air. And I'm so afraid of flying that I haven't gotten on a plane in more than seven years.

But when the moment of truth arrived, I took a bit of Ativan, did my breathing exercises, and suddenly I was lifting off from the place where I've been in treatment for eight months... flying over the house where I survived chemo. Nothing was going wrong. Up, up I went, and no part of me dissolved from anxiety.

It was overall a pretty decent flight. When I landed, I told the flight attendant that it was my first flight in years. As I was being wheeled down the airport hallway toward the car (I rode in wheelchairs a lot last weekend), she ran up to me with a pair of silver-colored plastic wings. I stuck them to my shirt and was glowing for the rest of the day. FLYING!

And then it was time to meet most of my fiance's relatives. The first thing we did was to sit on the porch overlooking the ocean and wait for dolphins to swim by, which erased my nervousness. We had a geeky internet video party! An amazing aunt wheeled me along a boardwalk and asked me to tell her all about birds! (We saw white and glossy ibis, tricolored and little blue herons, great egrets, skimmers, and so many gulls and turtles... and I really should cut this list short here.) Everyone was fun and very welcoming.

There were a few awkward moments. I wanted to go swimming, but I haven't bought the special bathing suit that I need. Why a special bathing suit? I've been pretty obfuscatory in describing my recent surgery, but I think I'm ready to spell it out now: I had a mastectomy. For the uninitiated, this means that I lost a breast.

My ladies were never all that large to begin with, but you'd be surprised how few things fit when you have a tangerine in one front pocket and nothing in the other. Still, at one point I just said "screw it" and went swimming in my old suit. It was wonderful, and nobody batted an eye.

Not too shabby for a first post-diagnosis vacation.

Brave

Today I took my first dose of tamoxifen, a drug that blocks cell growth in hormone-positive tumors. Tamoxifen has the unfortunate side-effect of sliding the body into a kind of early menopause. When people ask me if I'm done treatment yet, I'm not sure what to say, but the quick answer is no. I'll be on hormone-blockers for the next five years.

My fiance whipped up a fizzy drink and I took it like a shot. Down the hatch.

Radiation's kicking my butt. I have a huge red burn across my chest. I napped all day today, and all day yesterday. I've been trying to keep up with paddling, but yesterday I got into the kayak and promptly fell asleep.

The most hilarious radiation room song I've heard so far: Your Body Is A Wonderland by John Mayer. Your body is a wonderland... I'll use my GAMMA RAYS.

I've had some really great times with friends lately. And it helps to have someone tell me I'm brave over and over. I need to hear it, and holy crap am I ever.

Did I mention I'm half-Scottish?

Reboot

Arrrrrrrrrgh.

This morning I went in to see a podiatrist about my sore foot. She gave me an enormous foot boot and ordered me to stay off of it for three weeks.

This way lies madness.

This and that

I spent last night watching the sun go down, geeking out with some friends and drinking soda and eating fancy food, on a beach covered in plovers and terns.

My busted foot means that I've been kayaking a lot. My knowledge of ocean wrack is exponentially improving.

I'm hanging out in the radiation lounge, and I just spent about a half hour cheering up a lady with cancer. I gave her all of the tips I'd learned, things like: It's okay to be sad. Use the social workers as much as you can. Talk to the dietitians about planning chemo meals. At the end, we hugged, and I realized that I felt a sense of peace about today - I've accomplished something important, so the rest can just be fun.

Why me?

Early on in my breast cancer experience I went through a period of guilt. I think that everyone with cancer goes through this stage. I asked myself, what did I do wrong that gave me cancer?

So, here's what I found out.

Genetics: Well, my mom had breast cancer. She was much older than me when she got it (sorry, mom!); also, she was the only one in our entire extended family who got breast cancer. But the known breast cancer gene mutations bring a greater risk of breast cancer in younger women, which might explain my situation. So, I went through a full battery of genetic tests.

The results? Nope, I don't have any of the known genetic mutations.

Known risk factors: Okay, there are a slew of known and potential risk factors. Research into these risk factors is splashed across news sites every few weeks: all sorts of foods might cause breast cancer, caffeine might cause breast cancer, alcohol might cause breast cancer, medications might cause breast cancer, eating skittles while skydiving might cause breast cancer. With many of these risk factors, the link is tenuous, and it's often later found to be unsupported.

Some risk factors do withstand scientific scrutiny. Here's a handful of them. My risk rises if I'm black (which I'm not), if I smoke (nope), if I started my periods young (nope), if I'm obese (nope). It rises if I don't have kids (yup) and if I have dense breasts (yup). There are also all sorts of studies about diet and breast cancer, but they're so complex and nuanced that I gave up reading them. I've run across vegans, people who are lactose intolerant, and people from all sorts of dietary backgrounds who have cancer. Unraveling that link, if any, is going to be complex.

I was on the birth control pill shortly before my diagnosis, and I agonized about that for a long time. But I discovered that the link between the pill and breast cancer is ridiculously complicated. Also, if I count back to the time when the cancer may have started, I wasn't on the pill.

The results? Well, here's where I get on my soapbox.

Once, I came across an article called 'A clean-living young athlete with breast cancer asks: Why me?' There are some assumptions in that headline that really bother me. And after my research, I'm confident that the answer is this:

We don't know why young women get breast cancer. We may not ever know. And not knowing sucks. But no matter what risk factors a young woman may have, her odds of getting breast cancer are very low. Only about 5% of breast cancer happens in women under 40. Something like 0.03% of women my age get breast cancer.

So, whether you're a clean-cut young athlete, or somebody who doesn't run a lot of marathons; whether you've got kids or you don't; whether you eat only carrots or drink booze and eat cupcakes - you still probably won't get breast cancer young. The vast majority of young women who fall into a known risk category don't get breast cancer, and many people who get breast cancer don't fall into any risk category.

Here's the important bit: as far as we can tell, bad luck plays a big part in whether someone develops the complicated and mysterious cellular mutations that cause cancer. Life is about calculated risks, and the risk of getting breast cancer as a young woman is small.

I don't want to minimize the issue; breast cancer in young women is awful and it's something that needs more attention (a little self-promotion there). It's the second leading cause of cancer death in young women, robbing many wonderful gals of the future they deserve. Also, for reasons that we don't understand, the disease is more vicious in the young. We need money for research; we need to find out, for example, if environmental toxins are a key factor. Maybe all we need to do is stop the production of a few chemicals, and we can save hundreds of thousands of young women needless suffering.

But, back to personal responsibility: I'm not advocating destroying your body through rampant partying and misuse. A happy body leads to a happy brain. But assigning guilt and blame just doesn't make sense. This is something I struggle to internalize, but it's true. We women deal with enough needless guilt as it is.

In the case of this crime against my body, the thief is long gone and there are very few clues. I need to leave the evidence for the scientists and activists to sift through; my job is to pick up the pieces.

Day-to-day life

So, here's what I've been up to over the past couple of days. I think it's a pretty good slice of the emotions and activities I'm experiencing lately.

On Thursday and Friday I woke up, did some chores, and felt so incredibly powerful to be able to... load and unload the dishwasher. Unpack boxes from the move. Make breakfast. Although I'm grateful that my partner was able and willing to handle pretty much everything during heavy treatment, I can't tell you how useless I felt. Going from a rewarding, high-pressure job to my new job, "Trying not to throw up and sleeping all day", was... well, at least I was fully qualified.

Then I hopped in the car and we went to radiation. Yesterday's radiation room music was hilarious. Michael Buble's cover of the Spiderman theme song? Honestly? Zapped by a radioactive field, she becomes... ridiculously unlucky cancer woman!

And then, kayaking. Gliding over green water. Hiking in a beautiful arboretum. Having a picnic. The ocean. Late-night thunderstorms. Board games and friends. Insanely awesome nature experiences. Little baby orioles.

Most of me is able to enjoy these things, but a tiny part of me is always worried, thinking, I love this place. I want to stay. It's a strange and exhausting kind of double vision.

We drove home and a totally rocking music party occurred. I'm not any better at car dancing despite practice. But when I got home, I found that a friend had sent me a story about a woman who died of metastatic breast cancer five years after she was initially diagnosed with a less-serious cancer than mine. I had a moment.

Then I cuddled into bed, and woke up next to someone who I love so much. Who makes me laugh, and gives me hope. I got up. Lather, rinse, repeat.

Irradiated

I had my first radiation treatment today. The radiation team had a Bob Marley CD playing in the room, and I got to listen to "Get Up, Stand Up" while uncomfortably stretched out and confined on a treatment bed.

My geeky fiance has forged a special bond with my geeky radiologist. The radiologist saw me for about five minutes before she rushed out - but when I'd changed and walked out into the waiting room, I found her talking my fiance's ear off about radiation science. I have to admit that the whole process is dead cool. Y'know, when it's not terrifying.

I've been resting my foot and recovering from a cold, but kayaking every moment I can, taking pictures of nesting shorebirds and breathing in the salty air. I saw Tim Minchin live in concert and spent a bit of time with friends. It's been beautiful lately.

I found out today that I'm not allowed to wear anything sleeveless this summer. I'll have to wear high-necked t-shirts in order to keep the sun from damaging the irradiated area when I'm outside. I'd just bought a few very nice tank tops and tank dresses, and absolutely all of my hiking stuff is sleeveless, so, well, crap. If you have advice about what I can wear that's high-necked and mildly sleeved, I'd love to hear it.

It's true that the worst part of cancer is the way it threatens my life. But sometimes I feel like cancer's a bully, stumbling around punching little parts of my life in the face. It sounds like such a petty thing, but it took me a long time to become comfortable expressing myself through clothing, and to wear things that were comfy to me. Now, like a member of a snotty high school clique, cancer's telling me that my style is totally passe.

You grew on me like a tumor

During one of my medical visits, my doctors told me that my cancer was probably growing inside me over the past 6 or 8 years.

This means that I've had cancer since getting to know most of you. My carcinoma was there when I was getting drunk at a fancy wine bar in New York City and hitting on the guy who would become my fiance. It was there when I took a dizzying bus trip to first see him, and when I told him I loved him. It was there while I was climbing mountains and slogging in swamps throughout my MS degree, and while I was learning the tango and how to make video games and gaining 50 other random skills. As I was turning into the person I am now, this very tiny thing was branching out in my breast.

On the down side, it's horrifying to imagine this thing getting into bed with me every night. On the up side, this has been me, in some sense, living with cancer. Imagine what I could do without it.

Busted foot blues

My foot continues to hurt. I went to a foot doctor, and he ordered me to walk gently on it when it didn't hurt - so I tried this, and the pain came back tenfold. New doctor time.

I met with my surgeon and oncologist yesterday, and they recommended a podiatrist. I called his office first thing this morning and made an appointment, but he can't see me for three weeks. I brought out the C-card and he agreed to put me on his cancellation list as high priority.

I'm having a hard time with this. Even throughout chemo, I could stumble down the street to look for birds. Now I'm stuck in the apartment unless we go for a drive. And it's not just my mental health that's suffering; my oncologist is concerned because exercise decreases the risk of a cancer recurrence by something like 40%.

I'm trying to react to this the way I did during chemo, and with my old arm-related repetitive strain injury - imagining creative ways that I can stay happy and healthy within the confines of my physical ability. I've been kayaking, for instance, and I'm thinking of joining a gym so that I can gently exercise on machines that don't involve feet. Oh, and did I mention that I'm eating like a pro? My new best friend is kale. Kale.

But at some point I get so damn tired of expending the energy to come up with fancy solutions for my body's collapse.

Movements

The past few days have been busy and kinda intense.

On Friday I had my radiation planning session. I lay in a CT scan machine while technicians drew all over me in sharpie, repositioned me, scanned me, and eventually tattooed me with six little dots so that the beams of radiation would be aimed perfectly.

One of the oddest things about this experience is that so many of these events would have been significant just on their own, but they're all piled up together so I don't have much time to fuss. I never imagined that my first tattoo would be a scattered bunch of dots representing the Boobie constellation.

Other things that happened: my foot continued to hurt, and I went to a foot doctor who told me there's not much to do for it but ease back into walking. (Being semi-immobile is unbelievably frustrating.) We said goodbye to a friend and ate incredible Cambodian food. We got a flat tire on a really busy downtown road. And we're in the midst of moving from our old apartment to a new one.

It's strange to be moving in the middle of treatment. The old apartment was the one where I got diagnosed, where I looked at my body in a bemused way as I showered after my first surgery, and where my family came up over the holidays so I wouldn't have to travel during chemo. We never intended to stay there for more than a few months (it was a short-term lease), but leaving it behind is confusing.

However: our new apartment is incredible. My fiance, his family (my family now! They are an awesome family) and our friends have been absolute heroes about moving while I grumpily nursed my foot. We have our own place with furniture that's ours. It's peaceful.

What else? Oh, I went to an art gallery event for young people with cancer. It was put on by my hospital, and was the fourth in a group of visits. The other patients are wonderful, brave people. One woman got cancer when she was 23. We talked a bit about the 'theme song' music we listened to during treatment, and she shared hers with me:


I was a big Dave Matthews Band fan in high school. This was one of my favorite songs, and it's strange but appropriate to hear it ten years later in a cancer context.

Busy

I have a lot of things to write about, but we're moving and there's a lot going on. So, here's a picture from a quick kayak trip that we took yesterday. We bought the kayak last fall, the day before my most frightening scan. It's coming in handy on days when my foot hurts too much to hike a lot.

Besides packing, the past few days have involved a zillion doctor trips (not unusual), but also some great meals with friends, a whole lot of sun, some sweet shopping, and an excellent night spent watching documentaries about the deep sea. I also bought a book about tide pool critters and have been trying to teach myself the names of algae and sponges.

Rad

On Saturday morning we heard a weird knocking sound in our living room, like someone was hammering in morse code. I couldn't figure out what it was, but my fiance insisted that it was a woodpecker tapping on the house. I told him that this was ridiculous.

We went to the window. Sure enough, there was a little downy woodpecker trying his best to carve a hole into our shingles. Whaaaat.

Today we woke up early and went down to meet with the radiologist for the first time. I kept yawning -- my energy's still totally depleted from the surgery. Luckily my gentleman friend took notes. The radiologist was a huge nerd, which suited us just fine. She quickly adjusted her explanations once she figured out how much of the science we knew and didn't know. It was pretty impressive!

I'm going to get zapped with the same amount of radiation as a person would've gotten at Chernobyl right at the reactor over a span of ten minutes (but in a very localized way). This explains why it'll take the radiologist a couple of visits and a week of calculations before she feels comfortable putting me on the table. I'll be getting 33 treatments over a span of a few weeks.

The list of side effects sent my head spinning, but it's no worse than the side effects of all my other treatments. My body's been through an unbelievable amount of stuff.

Mental maps

I thought I'd write a post about mental health. It's a sensitive topic for me, but it's been a really important part of my care.

My cancer clinic has an incredible mental health program. But I didn't take advantage of it at first, because I wondered, what could a counselor really say that would make things better? I'd had therapy in the past that took a hard look at my anxieties as an overreaction to situations. This was new.

When I finally reached out a tentative hand, though, I got a whole lot of very valuable help. I got a psychologist who put me onto an antidepressant (Lexapro) and some anti-anxiety meds for the worst days. I got a social worker. And, maybe most importantly, I got a really amazing psycho-oncologist.

Yep, psycho-oncologist. I love that word.

The goal of this mental work hasn't been to make everything okay. Cancer sucks. Sucks, sucks, sucks. And it's a uniquely challenging thing to experience as a young person (maybe I'll talk more about this in a different blog entry). What has happened, though, is that I'm able to enjoy almost all of my days. I go on vacations. I love my friends, I go to parties, I smooch my boyfriend. I eat good food. I'm able to take good physical care of myself, and for the most part I have a decent quality of life.

It's been a lot of work with everything from existential questions to the basics, but it's worth every moment.

Almost too sleepy to type

Today I woke up in a state of serious worry. It was de-draining day.

I've learned that it can be much less painful to get chunks of your body removed than to get medical devices implanted. The two drains made the last few days miserable; every hour or so they'd get jostled and I'd feel a sharp, intense stab in my chest. Sleeping was really difficult, and it was made more difficult by all of the painkillers, which gave me awful dreams. I tried watching comedy shows before bed to get into a calmer state of mind - and spent the night fleeing nightmarish versions of Liz Lemon and company.

So, when I was told that I'd get my drains removed today in a process that would involve no anesthetic, I was pretty unhappy. Even if it meant that I could appear in public without looking like I was pregnant with something horribly wrong.

In preparation for the visit I got two extra-strength tylenols and two oxys "on board" (as the nurses say). Then I limped to the car and we traveled to the hospital. I'll spare you the details of what happened next, but the nurse was wonderful, I held my mom's hand, swore only a little, and suddenly the drains were gone! I could stand up! And breathe! YESSS!

Then my mom, fiance and I went out for a celebratory lunch. I ate salmon and drank a very rich hot chocolate. We chatted and watched the leaves of a silver maple flutter in the wind outside. I went home, sat down, and suddenly felt so exhausted. There was a blur of time and now it's almost midnight.

Time for sleep.

Drained

This is going to be gross; you are forewarned.

There are two drains coming out of my surgical site. They're plastic, and end in containers that I have to empty several times a day. I need to measure the output. Once it's below a certain cc, I can have them removed.

They're really unpleasant to empty. I learned yesterday that I can only do it when I'm on a full dose of painkillers. I have a pretty idiotic urge to take fewer painkillers than I'm supposed to, and it's been driving my caregivers crazy. But after yesterday's experience I'm just going to swallow my oxy and tylenol like a good girl.

I'm living in a haze of drugs. Being a bionic person is a whole lot less fun than it is on tv.

Home again, jiggety-jig

Blogger was having severe issues over the past day, deleting posts and forbidding updates. This is probably a good thing, because I spent most of my time in the hospital seriously, deeply stoned.

It would have been a nice sleep if someone hadn't come by every couple of hours to take my temperature, check my bandages, give me some painful shot or exam, or (most hopelessly) try to give me some instructions. But boy, did I ever get nice hospital care otherwise. Here were the perks:

• I had a private room, which was a good thing because all of us folks on that floor were pretty sick.
• They let my fiance stay over. I had been dreading spending the night alone, but they let me have someone to hold my hand and tell me I'm hardcore.
• The food was amazing. On my first night I ordered some delicious soup, a salmon dinner and chicken with gravy and fruit. Munchies, maybe?
• The nurses came right away when I needed something, and they really advocated for my care.

But it's so good to be home. My mom is here, and the bulleted list for that would stretch off the page.

Surgery time

My surgery is finished and I'm up in my overnight hospital room. Everything went well this morning. I'm still full of drugs and out of it, but very comfortable. The staff here are so nice. This is taking a long time to write, so it's time for me to snuggle into this bed and nap.

You are over-encumbered

I've been feeling very subdued and slow. The major upcoming surgery, my awful flu of last week, and my busted foot have made things more challenging. I'm not depressed, just thoughtful and physically exhausted. I'm definitely being less social than I should be.

The other night a friend came over and we sampled some gourmet lollipops for the wedding while putting together the invitations that she'd designed. Even though I was tired, there was a lot of joking and eating and fun, and the invitations are amazing.

I've been playing a lot of The Elder Scrolls iv: Oblivion. This is a video game in which I am a powerful but tiny lady with an enormous club that shoots fire. Enough said.

I'm trying to be patient with myself. I'm hugging my fiance and breathing.

Am I cured yet?

This is a tough post to write, but I think it's pretty important.

People keep asking me when I'll know that the treatment worked and that I'm cured. It's a totally reasonable question, but it's also, unfortunately, impossible to answer.

Detecting cancer cells isn't an exact science. Mammograms don't catch all cancers, breast self-exams are useful but crude, and the mother of all scans - the PET/CT - can't detect the tiniest of tumors.

Treatment isn't perfect, either: the goal is to eliminate enough cancer cells so that the body can clean up the rest of it. Once breast cancer spreads to the rest of your body and takes hold, it's incurable. (Compare and contrast to Lance Armstrong's cancer, which was curable even though it had spread to his brain, lungs and bike helmet.) To read more about this stage, check out this extremely excellent article.

In the middle of the night, I sometimes ask myself, where's my tricorder?



There's a big misconception that once treatment is done, it's over. Here's the truth: once treatment is done, the waiting begins. Every ache and cough could mean that the cancer has spread. If I make it two years without the cancer spreading, that's great. If I make it another three years, that's really great. If I make it ten years, the odds are low that the cancer will spread. Hormone-positive breast cancer is never, ever declared cured.

I'm not going to detail my odds here. Though there's reason for optimism, they don't paint a full picture, and the more we learn about my cancer as we go, the fewer statistics there are for my unique situation. I'm at one of the best cancer centers in the country, and my cancer is somewhat slow-growing. Breast cancer is relatively treatable when compared with some other illnesses. These are comforting to me. But if I continue to be afraid for a long time, here's why.

Regrouping

My mom gave me some much-needed advice yesterday: I need to take it easy.

I'm not very good at doing nothing. Last week I hiked like mad, tromped through the mud, busted my foot, and so on. And that's why I got so sick. It was confusing to feel a little bit healthier after the chemotherapy, because it seemed like I was suddenly just as strong as I've always been - but anything feels like perfect health compared to the four-month-long emotional and physical struggle of chemo.



So, yesterday and today were mostly about getting over the tail end of that flu: sleeping, drinking water, snuggling into a new sweater and breathing the steam from copious amounts of tea. But I did go on a very gentle bird-watching walk.

I've become a total hedonist lately, squeezing pleasurable experiences out of the moments when I'm not feeling terrible. I'd like to write about that, and also about more serious cancery things, but right now I'm relaxing. Mom's orders.

Low points

I'm sitting in the prep room for my next surgery. I'm wearing a pretty swanky robe. They also gave me a hairnet, which strikes me as totally hilarious.

Yesterday I went to a walk-in clinic to get a sore foot checked out, and it turns out I probably have a little fracture in a metatarsal. So, I got a special shoe.

Then, last night, I started feeling really achy and sick. I took my temperature, and sure enough, I had a fever. Looks like some kind of gastrointestinal bug.

So, limping and nauseated, I dragged myself to surgery this morning at 5:30 am. People stared at me in the waiting room. This happens a lot, probably because I'm usually the youngest person there, but today I found it pretty funny trying to guess which of my three problems they were looking so worried about. As I'm typing this, my docs are deciding whether to operate.




... Aaaand it looks like I'm being pushed to next week.

On the one hand, I'm sad - I'd emotionally prepared myself for this surgery, and now I have to do the same thing next week. On the other hand, all I want to do is chug this gatorade and sleep for a thousand years, so wish granted.

Women

Okay, time for a happy post.

Confession time: growing up, I had mostly male friends. This was pretty much an accident - my interests were, at the time, mainly male-dominated. As time went on, I awkwardly stumbled toward the goal of building a social life that also contained a group of strong, supportive women. And I mean awkwardly.

So, here I am, planning my post-treatment wedding (which, by the way, is a pretty big act of hope), and I realize that I've reached place where I can muster up a big pack of bridesmaids, all from different places and points in my life, all absolutely incredible women. And I'd totally have a dozen bridesmaids if it wouldn't be ridiculous. (Not to mention an imposition - asking all of my gal friends in the world to color coordinate seems unnecessarily cruel.)

I've met some female cancer patients since the diagnosis who are the strongest people I've ever known. My doctors are also incredible, geeky, brilliant ladies. And I'll probably write a completely separate post about how the women in my family are facing this disease with me, because it would just choke me up right now.

I love you all, and I'm so grateful that you're in my life.

When you face cancer, some people want you to come out of it completely different, treasuring every single moment. Honestly, I think it's effing impossible to treasure it all, especially the parts where you take off a hat and your wig decides it's a good time to hurtle into the air like a furry meteor, or where your good friends klonopin and ativan are the only things keeping you from solid panic, or where you need to jump in the bath for the sixth time that day just to quiet the pain in your bones. A friend of mine and I were talking about how cancer hasn't fundamentally changed who we are - it hasn't given us a personality-ectomy.

But there are a few small, cheesy ways that I've changed. I pause more often than I used to (which was, actually, pretty often, because I'm a sap like that) to appreciate things like this.

The story so far

In the fall of 2010, I made an appointment to get a regular checkup with my gynecologist. A few days before the appointment I noticed a tiny lump in my breast. My mom had a history of benign breast lumps, so I figured that my lump was similarly benign.

My gynecologist did an exam and also noticed the lump. He wavered about whether to get it checked out, because:

• breast cancer in young women is incredibly rare.
• the first step toward diagnosis is an ultrasound, and then all suspicious lumps get a biopsy. Of the lumps that make it that far, only 1/20 is cancer. The American Cancer Society has pulled away from supporting breast self exams in part because of the unnecessary biopsies.
• young women have pretty dense, lumpy boobs.
• they didn't want to make me nervous.

Just to be cautious, I pushed to get the ultrasound. I didn't think it was cancer, but I figured I was being a good health-conscious lady and it would help me learn what non-cancerous lumps are like.

The doc didn't like what he saw, so I got a breast biopsy.

A week later, my gynecologist called me, totally shocked. "Invasive lobular carcinoma medical word medical word" he said in a rush. I looked it up. Shit.

The initial news looked great - my cancer's really tiny, just 1.6 cm at its longest end. However, later tests found that the little guy had spread himself around. This is a matter of luck, as is so much with cancer. Like people, each carcinoma is unique (but unlike people, they are all assholes). I got the full swath of genetic tests, all negative.

Suddenly I found myself at 29 with later-stage (but non-metastatic) breast cancer, facing surgery, chemo, surgery, surgery, radiation, and probably more surgery if they can find something else to chop out.

As of this moment, I'm done with some of the surgery and all of the chemotherapy. There was still cancer in my breast after the chemotherapy (in a margin that had to be cleaned up - more shitty luck) so I'm headed for more surgery. We're racing to catch the cancer before it goes metastatic.

I'd just finished grad school, and I'd done my first internship. I was about to start a career. I was about to get engaged.

Some of this continues with cancer. Some of it stops.

So, here's what that's like.