Saturday, July 30, 2011

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.

Tuesday, July 26, 2011


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.

Thursday, July 21, 2011

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

Saturday, July 16, 2011

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.

Friday, July 15, 2011


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.

Wednesday, July 13, 2011


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.

Tuesday, July 12, 2011


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

Saturday, July 9, 2011


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.

Thursday, July 7, 2011


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.

Wednesday, July 6, 2011


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.