Thursday, July 9, 2009

LIVESTRONG 2009

Several months ago I joined the LIVESTONG Team Fat Cyclist:Fighting for Susan. I am sure most people who read any kind of blogs have heard of Fatcyclist.com and of Elden Nelson. He can write beautifully and can also be very funny.
I personally don’t like to do charity bike rides. I don’t think people should give money for me to do something I enjoy. If I really want them to donate money for something, I should have to eat bugs or touch snakes because that would be something you would really have to pay to see. I changed my mind about charity rides this year after reading Fatcyclist. You see, Elden has a wife named Susan whom he loves so much you can see it pouring from the words he writes. Susan is fighting so much cancer I cannot even start to write about all of it. Elden is fighting by trying to build the largest team ever for LIVESTONG and also raise the most money ever. It awes me to think of what both of these people are doing to fight cancer.
I am going to post what Elden wrote yesterday just in case you don’t want to click on a link to see it because I think it is that important. If you have not already donated to LIVESTRONG, or just want to donate more, please visit my page. If money is too tight to donate, then please says some prayers for this incredible family.

Fighting LIKE Susan
07.8.2009 | 7:39 am
You know you’re living a different sort of life than most people when you stop checking to see what bone your wife has just broken.
But that’s where we are.
Last week — just a couple of weeks since her left collarbone broke — when I was helping Susan sit up, planning to transfer her to the wheelchair, something gave. It was probably a rib (or might have been a vertebrae), but we don’t know which one.
We do know that this establishes a pattern: the narrow structural bones — the ones that get lots of stress on a daily basis — are the ones that are going first.
And since Susan’s right collarbone is starting to ache, I’m officially terrified to move her. Not that she’d let me anyway: any position but flat on her back triggers the pain that only a freshly-broken bone can bring.
Which means that I’m currently totally stymied. Every day, several times per day, I ask Susan, “Is there anything I can do for you?” And she knows I don’t mean get her something to eat, or read her a book, or massage her scalp. I mean, “Is there some way I can fix you? Or at least rig something together to make your life more comfortable or convenient?”
But nothing comes to mind.
The Story So Far
To understand my frustration, you need to see that doing something to help has been my coping mechanism through this whole process. Back in Christmastime of 2003, when Susan first found a lump in one of her breasts, my reaction — odd as it might seem — was to start looking in earnest for a better-paying job with better benefits. With better insurance, I’d be able to get Susan better treatment. I did what I could to fix what I could.
And that worked. I found a good job at a company with a great health plan. But we’d have to move.
Of course, that meant that while Susan was recovering from a mastectomy, we were also putting the house up for sale and packing and moving across the country…while taking care of twin toddler girls and two young boys who did not want to move.
Then there were a couple of temporary houses and the house we finally bought — all while Susan endured chemo.
The chemo, though, had a surprisingly common side effect afterward: depression. Think about it: your body’s weak from enduring weekly poison. You’ve been through a huge emotional and physical experience but will have to wait for resolution. You’re bald and probably puffy from steroids. Most oncologists, I understand, plan on depression as an after-effect of chemo.
So again, I tried to fix things. I found a new job, closer to friends and family, and in the sun. We moved again, back to Utah.
Susan loved the house, loved the neighborhood, and felt better in general. She started working out, getting her strength back.
And then her hip started hurting.
Neither of us wanted to even acknowledge the possibility of what that might mean, so for weeks she just treated it like a sports injury.
Finally though, she went to the family doctor, who did some X-rays. And then he immediately called the oncologist.
And that’s where the news got bad. Susan’s cancer had metastasized, and was in her bones, lungs, liver, lymph nodes, and spine.
Honestly, I now can’t even remember the order of some of the treatment from that point forward. Did we do radiation and then chemo? Or was it the other way around? It almost doesn’t matter, because before too long, Susan couldn’t walk any more without crippling, crushing pain in her hip.
A tumor had destroyed it.
An excellent surgeon at the Huntsman Cancer Institute did a partial hip replacement, while I scrambled, fixing things around the house as well as I could. A stair elevator. Rails in the bathroom and shower. Furniture rearrangement galore.
Then there was more chemo, and for a while things were looking pretty good. Susan could walk using nothing but a cane (and even short distances without the cane), and she even had the mental energy to start writing a novel.
And then, a little over a year ago, Susan lost the ability to sleep. Three nights went by, with her getting no sleep whatsoever. I tried to help with soothing music, back rubs, sleeping aids and reading obsolete technical documentation I had written years ago out loud to her.
And then she had an MRI. Brain tumors. Too many to count. We did the radiation, and then chemo for a while, and that’s been about as much as we can do.
So now, as Susan’s become weaker, I’ve been adapting and solving. When she couldn’t sit up, I learned to swing her into position and move her into a wheelchair.
When she was uncomfortable being in one position in a chair all day, I bought an easy chair that can change positions with the touch of a remote control.
When one of her collarbones broke, I learned to do everything I had done before, but without pulling on that arm or shoulder when I lifted her.
Which brings me back to where I started this post. Stuff’s breaking faster and worse than I know how to adapt to now. Susan’s on her back, and when I tried to lift her into a sitting position a couple of days ago, I may as well have jabbed her with a knife.
Susan doesn’t complain, at least not very much. Nowhere near as much as I would. I would complain all the time. I would find new ways to complain. I would make it my primary function.
Susan, on the other hand, just wishes she could make jewelry again. Or get back to work on writing her novel (she’s working on the final chapter). Or drawing with the twins, who seem to have inherited their mom’s creative ability, and go through reams of paper per week.
Susan is fighting, in other words, with grace, courage and strength I could never hope to match.
At the time I married her, I would never have suspected it of her, but Susan has inner reserves I can only call heroic.
Team Fat Cyclist: Fighting For Susan
At the beginning of this year, I put together Team Fat Cyclist: Fighting for Susan for the LiveStrong Challenge in all four event cities (Seattle, San Jose, Philly and Austin), because — as is my way — I wanted to feel like I was doing something. Helping somehow.
Most of you don’t know how much time and thought I put into the “Fighting for Susan” phrase, though. I considered it pretty carefully. “Fighting for Susan” could mean that we’re fighting to help Susan. Or that we’re fighting because Susan can’t. Or that we are fighting in her place. Or as a tribute to her. I meant — and mean — all of those things.
But when I look back at what Susan’s gone through and how she is — in spite of everything that has happened and is happening to her — the same wife, mother, friend, and creative force she has always been — I realize something.
We can all fight for Susan, but there are very few of us — not me, certainly — who could ever fight like Susan.
Still, it’s definitely worth fighting. And if enough of us fight with even a fraction of the tenacity my wife has shown, someday maybe we’ll get to pick a different battle. Hopefully, before our twins are old enough to worry about this disease.
Thanks for fighting with us. And for us.

2 comments:

Lisa Slow-n-Steady said...

Thanks for sharing. :-)

B.o.B. said...

Just found your blog. Thanks for sharing. What a battle. I can't even imagine. It's totally worth charity riding for.