It’s hard for me to believe that it’s been just about ten days since we found out that the cancer (metastasized breast cancer for those of you who are new to the blog) has spread to Susan’s brain. It’s been the longest ten days of my life. The fear, the anger, and above all the overwhelming sadness left me questioning how I could possibly continue to be strong and positive for Susan and my kids.
The answer, I think, is that I can do so with a little luck, and a lot of help from my friends.
Which is my way of saying that last weekend was really great.
Videoing Down Memory Lane
In my last post, I said I was going to be videoing Susan and me talking about about our memories. I imagined these conversations as gloom-tinged, somber affairs, with Susan and me sadly and reverently recounting her life.
Instead, these have been a huge amount of fun. Yesterday was Mother’s Day, so we talked about the birth of each of the four children. We remembered stuff we hadn’t thought about in years, and we spent as much time laughing as talking.
I had expected it would be difficult for us to talk in front of the camera for more than five minutes at a time, so I was surprised when the camcorder beeped — we had been talking for half an hour, and the 4Gb memory card was full.
Normally, we’re so busy with what’s going on right now that we don’t have a lot of time to look back at the life we’ve been living. Doing these videos is giving Susan and me a reason to think and talk about everything we’ve done together, and I’m realizing more fully than ever what a good life I have had, and am having.
If we keep recording half an hour per night for several months, we’ll have more footage than anybody but me would ever care to see. That’s OK, though. Someday, one of the kids can trim it down into a nice 90-minute video. That’s not my problem.
I Have Great Friends
I have always been grateful for the “Core Team,” my inner circle of riding buddies and friends. What is really getting to me right now, though, is how the Core Team is rallying behind Susan and me with acts of kindness that are incredibly touching.
- Kenny brought us two loaves of homemade bread and a giant print of that Lance Armstrong photo.
- Brad has been bringing us dinner every Sunday.
- Dug is bringing dinner over tonight, and has been bugging me nonstop about letting him help in other ways.
- Bob flew over from Seattle.
- Gary fixed my fence and set up my sprinkler system for Summer.
- Rick M brought over all kinds of fresh fruit and vegetables for my family.
- Rick Sunderlage (not his real name) and his wife made dessert for dinner tonight, which I have eaten the entirety of, snarling at anyone who dares come near.
More importantly, though, was that we all went on a ride on Saturday. Everyone I listed above showed, plus Sleepy, BotchedExperiment, Racer, and Arthur. Just a nice, mellow ride on a local trail with my friends on a beautiful Saturday afternoon.
It’s hard for me to even describe how great a few hours of normalcy felt.
Oh, and also it was fun to laugh at Bob’s new hairstyle:
I Have More Friends Than I Could Ever Imagine
In addition to the friends I know, Susan and I clearly have a lot of friends we have never met. Hundreds — literally — of you have donated to the fund Kenny set up last week. In practical terms, this means I was able to write a $2800 check to cover some mounting deductibles today, buy Susan a walker, and cover the cost of one sister flying out from NY to help us for a week, and for another sister driving out to help us last week. You guys paid for all of that. Thank you.
The practical part isn’t even the most important part, though. Since this ordeal has taken a turn for the worse, the huge influx of kind comments and email has really given me a boost. And I’ve needed it.
I Saved the Best for Last
What really made this weekend great, though, was Susan. Her mind is clearing and she’s getting back some of her dexterity. She still needs help, of course, but I notice little improvements. Today, for example, when I was taking her to her radiation appointment, she snapped her seatbelt into place on her own — an action that had been beyond her a few days ago. That may seem like nothing to you, but I see it as a reversal of a trend.
She’s walking around better again, not needing crutches to get everywhere. And she’s not forgetting where she’s going or what she’s doing as much anymore.
It’s good to have her back.
A Note from Fatty: For those of you who want to donate to Susan’s WIN fund, I’ve added a button at the top of the right sidebar. I’m simultaneously embarrassed to have such a link and grateful to those of you who feel compelled to help. Thanks.
I’m sure you’ve played the game before: “What would you do if you had only six months to live?”
Believe me, the game is a lot more intense when you’re playing it for real. And the rules are a lot more complicated.
First of all, you’re not actually given six months. As near as I can tell, they only give you a definite period like that on movies and TV, where a nicely defined timeline serves the needs of the plot. Instead, you’re told you have “months, not years.”
Next, Unlike in the game, when you’re given a short period of time to live, it’s because you’re already deathly sick. So things like skydiving, kickboxing, and (worst of all for us) going to Italy can’t be part of your list either. If your daily radiation treatment is enough to tire you out, you’re probably not going to be traveling.
And finally, unlike in the game, in the real world you might have kids who are in school. And you might need to have your husband keep his job so he can buy food, pay the bills, and keep your medical insurance.
So, with those rules in mind, what would you do with your last unknown quantity of months?
Our answer, for right now, is to keep doing things pretty much the way we have been doing them our whole lives.
And you have no idea how happy I am that we are.
You see, the fact that, when confronted with a limited number of days Susan wants to go on living the life she already has is a big relief to me, and a huge credit to her.
Think about it. When confronted with the end of their life, almost everyone wants to spend their remaining time with their family. And since Susan’s raised our kids (and me) so that we want to be with each other, there’s no change here. Everybody’s already in place, and there’s nowhere any of us would rather be.
I’m glad for that.
Even more, I’m glad that Susan is still Susan. I’ve told her over and over how lucky I feel that even though this stupid cancer has ruined her body, it’s left her mind untouched. Susan still has the same personality she’s always had. She still has her memories. She’s still exactly the person I married.
When I think about how it could have just as easily gone the other way — Susan’s body could still be working and her consciousness could have been altered or eliminated — I get a huge wave of nausea.
Earlier this week, I had lunch with a man; his wife of forty years died of breast cancer about ten months ago. He told me that he regrets not having recorded her voice, of not getting down her stories.
I realized how close I’ve come to having this exact same regret. I’ve been given a grace period; I need to take advantage of it. So I’ve bought a tripod for the camcorder. For just a few minutes each night, we’re going to sit on the bed together and talk about things. How we met, how we got engaged almost immediately, how we discovered we were having twins, how I told her as she woke up from a mastectomy to have me tell her I had quit one job, taken another, and put the house up for sale while she was in surgery. What she expects of the kids. What she expects of me (including a promise to not become a bitter and angry man, I expect). How the novel she’s been working on should end (I’m still very hopeful she’ll end it herself). How she feels when making jewelry. What growing up near Venice Beach was like.
Really, conversations we’ve already had, and stuff I already know. But I need to get it in her voice.
I’ll always be angry at what cancer is and does, but I am glad that we’ve been given something a lot of people don’t get: time to take care of what’s important.
And I’m so glad we’re happy enough with what we have that we just want more of it. And I’m glad that Susan doesn’t mind me taking some of her remaining time for my selfish purposes: collecting and saving a little extra of her, so the kids won’t forget, and so I can make do.
When things are going really badly, it’s especially great to get a piece of good news. Yesterday and this morning, for example, I noticed that Susan isn’t absently wandering around as much now, and that her coordination seems to be improved — evidence that the steroids and radiation are doing their job.
I also got email last night from the Twin Six guys saying that the 2008 jerseys will be here very soon.
Last year, the pink Fat Cyclist jerseys were specifically for supporting Susan, with half the proceeds going towards Susan’s treatment and half the proceeds going to the Lance Armstrong Foundation.
This time, things are going to be a little different. We’ve got family and friends doing a lot of traveling and driving to help us out, not to mention the expenses that come with something like this. So this year, I’m going to use all the proceeds from all the jerseys — both orange and pink — toward Susan’s fight. In other words, when you buy a Fat Cyclist jersey — no matter what color or gender — every penny I get will go toward helping my wife, and offsetting the costs friends and family incur as they help my wife.
How Soon and where?
The jerseys will go on sale Monday, May 19, at noon Central time, and will be sold from the Twin Six site. I’ll post a link on that day.
The 2008 Fat Cyclist jerseys will cost $70.00, plus shipping.
Let’s Take A Look
It’s been a while since I announced the 2008 jerseys, so here’s a reminder of what they look like.
Here’s the Men’s, front view:
And here’s the Men’s, back view:
Here’s the Women’s, front view:
And Women’s, back view:
There will also be an extremely limited number of Men’s jerseys in pink.
Team Fatty Fighting for Susan
No matter what jersey you get, the “WIN” is now part of the Fat Cyclist Clydesdale logo. And the inside of your collar shows your support:
I’ve always been excited about these jerseys, but now I’m especially glad that both the orange and the pink ones have the messages of support.
And, speaking of support, thanks to everyone who’s been sending email and leaving comments. I read them all and they give me a huge lift.
I’ve said it before, but I mean it now more than ever: People who say the Web’s a bad place have been hanging around the wrong neighborhoods.
PS: My friend Kenny left the following comment on my blog this morning:
Dear Readers of Fatcyclist.com,
This last week has been truly tragic learning of the down turn of Suzanâ€™s illness. As I read these comments left by all you good people, the over all theme is the same. â€œWhat can we do for Elden, Susan and their kids?â€ I decided it was time to stop wondering and time to start doing. I set up a bank account in Eldenâ€™s name at a local bank here in Utah. It is linked to pay pal. The pay pal account is firstname.lastname@example.org . If you donâ€™t have a pay pal account you can also donate by going to my businessâ€™s website http://www.kennysphoto.com and clicking on the link in the middle of the page, where you can donate with the credit card of your choice. Please know that all funds collected will go directly to this bank account and after a two month period will be given to Elden, Susan and Family. Elden is unaware of this account, until now, of course. Iâ€™m not sure how he will react to this comment, but if he removes it, Iâ€™m going to continue to put it back on his blog and I invite you as fatcyclist readers to also put this on your own respective blogs. I truly believe that we bless our own lives, when we help others, so I hope that Elden will allow us to help him through this very trying time in his life. He truly has touched each one of us, through his writing and his friendship.
First, let me say that I’m touched. I’ve got great friends. Second, I’m going to say that right now I actually appreciate help like this. Even though I’ll be tempted to use it to buy another bike, I promise I will use every cent to help Susan with her treatment and to offset the expenses others take on on our behalf.
Susan’s been apologizing to me a lot lately.
She apologizes that I have to take care of all her physical needs — I need to help her stand up, keep her steady, make sure she eats, takes her meds, keep her clean, get her comfortable in bed, dress her, and other things.
I’ve told her dozens of times that she shouldn’t apologize for this, and I’m indescribably relieved that I really mean it. You see, one of my secret fears when I was younger was that when Susan and I got old, I’d have to take care of her physical needs–that I’d be a nurse. At the time, I pictured it as frustrating, inconvenient, and undignified.
The reality is a lot different.
Being able to take care of my wife right now means that I am doing something, and as long as I’m doing something I’m generally OK. More importantly, it means that I’m doing something for her and with her, and there’s nothing I like better.
Plus, even though we have family and friends staying with and helping Susan full-time now, I like to think that nobody else is as good at taking care of her as I am. Susan tells me that’s true, and I’m not asking her if she says that just to make me feel good.
Still, she says she’s sorry I have to take care of her. I’ve asked her if the situation were reversed, would I need to apologize to her for taking care of me? No, she says, meaning it.
Well, OK then, I say. You would take care of me if you could, and I’m taking care of you because I can. Fair’s fair.
But still, she apologizes. She says she’s sorry that I’m not getting out on rides right now. I haven’t told her (and she won’t find out from this blog, because she doesn’t read it anymore, although I often read the comments to her) that a couple times this week, I’ve left work to go on a ride and then have skipped it so I could get home a little sooner.
I’ll ride more later.
She apologizes for having to leave me. This is a much harder apology to hear, because often I do feel like I ought to be getting an apology for having my wife taken from me. I mean, how many really good marriages are out there in the world? Shouldn’t someone apologize for splitting us up?
But it’s cancer that owes me an apology, not Susan. I tell her this over and over. She didn’t invite this cancer. It attacked her — us — without provocation, and she has nothing to apologize for.
Really, this is Susan in a nutshell. Even though she’s been dealing with cancer for four years now, even though she’s walking on an artificial hip, even though she’s been robbed of her talents and pleasures, even though she can only sleep with the aid of a cocktail of powerful drugs, even though she has to be literally bolted to a table and radiated daily, even though she’s dying, she worries about and apologizes to me.
Look what I just found in my email inbox.
I’ve said before that Lance Armstrong’s contributions to the battle against cancer eclipse by far his professional cycling accomplishments. It means a lot to Susan and me that he’d take the time to send a personal message of support.
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