Tuesday, August 23, 2011


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.

Wednesday, August 17, 2011


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.

Friday, August 12, 2011


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.

Monday, August 8, 2011

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 GrahamHere'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.

Saturday, August 6, 2011


After that last post, I need a chaser.

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


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.