Saturday, July 17, 2010

The Quilt on My Bed



It's funny that even though I'm a quilter, I've had the same quilt on my bed for close to four years -- this one, a "brick quilt" done in bright colors set off by black. (Because as anyone who knows my quilts knows, that's what I love -- bright and black.)

This quilt is the reason I make my bed every day, just so I can see the colors, each like an individual jewel placed in its own setting, separate from all the others.

Four years on, this quilt is still making me smile.

Wednesday, July 14, 2010

Relearning Normal: Surviving Testicular Cancer as a Mom, One Year On

If you or somebody you love has been diagnosed with testicular cancer and you have googled something along the lines of "Surviving Testicular Cancer," chances are that Google has sent you here, to this post.

Stupid Google.

This was originally not that kind of post! This post was a mom's somewhat maudlin reflection on how having a son who survives testicular cancer changes lives. It does NOT start out as the kind of post I want you reading if your diagnosis is so new you're wondering about survival rates!!!

So here's what I want you to do: Read the first part. This part here, in italics, that I'm going in and writing after the fact. Don't read the last part. Read down to the *** and stop. Then come back in a year and read that section then. Okay? Because chances are incredibly, amazingly good that you will still be around then, and not just then, but much longer. Actually, you can come back in five years. Or ten. What the hell, bring your kids and your grandkids when they get here.

Because your chances of survival with testicular cancer are good. Really good. Really, really good. One of the best, as far as cancer is concerned. (I know that feels like a very relative statement, especially now. But that doesn't change your good odds.)

Want numbers? Here you go. As I understand it, if the cancer is caught when it is still localized in the testicle, survival rates are close to 100%. Even when it's spread to the abdominal lymph nodes, where it generally goes next, you're still at about 96%. And even when it's spread to the lungs and/or brain, which are the next destinations, it's close to 80%. These are good odds, okay? It may not feel like it when you're newly-diagnosed and trying to wrap your mind around the numbers, but they are good. This is a very treatable, curable cancer.

And know that every time I see one of you stop by after googling anything relating to cancer (whether it's "Surviving testicular cancer" or "mom son testicular cancer" or, most heartbreakingly "I am a 14 year old with testicular cancer"...) Know that every single time this happens, I cry a little bit, because I can still feel what you're going through and I know it's scary. And then I pray for you and your healing.

Okay. Stop reading now. See you in a year.


*********************

I dreamed last night that all the young men who had had testicular cancer were lined up together, standing in a rolling countryside and captured in a panoramic sepia-toned photo. As I watched, the ones who had survived stayed still and photo-like. But the ones who had died came alive. Inside the photo they began to run together, and to dance. And, yes, to play soccer.(Several of them were even wearing US Men's National Team shirts. Because, yes, even in sleep that's how my mind works.)

I watched their faces as they ran by, and they were all so young. And so alive.

I woke up and permanently warned myself off of 1) late dinners involving pepperjack cheese and 2) ever reading/watching anything related to Harry Potter again.

And then I cried. For these young men. And for their families. And for the fact that my son has survived (knock wood, cross fingers, say a prayer) and these young men did not.

It was so real.

I realized later that this dream must be my subconscious mind's way of telling me that I can now acknowledge and care about these young men -- the ones who, since my son's diagnosis last year, I have never really allowed myself to think about. The ones who were not as lucky. The ones who did not survive.

It's now close to fourteen months since my son's testicular cancer diagnosis, ten months since he finished treatment, seven months since his hair started growing back, two months since his most recent clean scan. Four more years of those clean scans and he's considered officially "cured."

It's been an odd year. Since Michael finished treatment, I have spent most of the time not thinking about testicular cancer.

Except when I do.

It hits me at the strangest times. Two months ago, I was at the parent's meeting about my younger son's choir tour of England and Wales. They handed out the itinerary and I realized that he was returning on the same British Airways flight I'd been on right before I learned of his brother's cancer. And I immediately got what I've come to think of as the "Cancer Mom Response:" The memories come flooding back, my throat tightens, my contact lenses mist over. I know that if I don't immediately think of something else, I will start bawling like a baby.

I don't like it when I get the Cancer Mom Response. A year on, with "cure" in our sights, it feels like an overreaction. We are the lucky ones. He is a survivor, and (crossing our fingers, knocking wood and saying a prayer) this will never again be more to him that the memory of a difficult summer. My misty eyes and tightened throat are...are...an overreaction. Right?

Yet still they come. In England we were visiting with friends we haven't seen in ten years, and the topic of Michael's cancer comes up. "I can't imagine," says our friend, a very sweet and empathetic person. "It must have been awful." Cue Cancer Mom Response. Because sympathy is the hardest thing to deal with.

And so, because, again, this feels like an overreaction, I try to act normal, as if it's no longer a big deal. Yet I find myself struggling to remember what "normal" feels like. How would normal people act here? What would they say, what gestures would they use, which words would they choose...? In the end I can't figure it out, and I have to change the subject.

Because I suppose we are not normal, anymore. We are changed. We have come through the other side (knock wood, cross fingers, say a prayer), but we are changed. For the better, for the most part, I hope. As extreme heat can facilitate the forging of silver, cancer can facilitate the forging of empathy and compassion. This disease has destroyed any inclination any of us might ever have had to pretend that bad things can happen only to others, or that if you play by the rules you will be okay. Because sometimes, through no fault of your own, it's not true.

Among other things, cancer has demolished even the tiniest possibility that anyone in our family could ignore issues like American healthcare. I don't think we could ever have been the blythe, blasé Marie Antoinettes during the debate, (we are social justice Methodists, after all.) But if that possibility ever existed, even remotely, it was annihilated by the cancer. (That happens when someone you love faces sixty years with a preexisting condition in a country that refuses to acknowledge his right to survive and live without the terror of having his healthcare snatched away from him through no fault of his own. Y'know?)

Last September, days after Michael finished his last dose of chemo, the family went to see the play "Wicked" -- the backstory behind the good and bad witches from "The Wizard of Oz." In the end, the two of them find that their lives have become inextricably linked. They have been changed. For better? Unclear. But definiltely "for good."

I sat there in the theater, tears streaming down my face, and listened to the words:

Like a comet pulled from orbit as it passes the sun
Like a stream that meets a boulder halfway through the wood
Who can say if I've been changed for the better
But because I knew you, I have been changed for good


I realized that those words, describing a difficult relationship, could well describe dealing, as a family, with cancer. So much hurt, and a lot of challenges, but... But perhaps there is something more in there as well.

We have been changed.

Yes, I believe, for good.

Monday, July 12, 2010

I Knew I Loved Mark Twain for a Reason

“The multimillionaire disciples of Jay Gould — that man who in his brief life rotted the commercial morals of this nation and left them stinking when he died — have quite completely transformed our people from a nation with pretty high and respectable ideals to just the opposite of that; that our people have no ideals now that are worthy of consideration; that our Christianity which we have always been so proud of — not to say vain of — is now nothing but a shell, a sham, a hypocrisy; that we have lost our ancient sympathy with oppressed peoples struggling for life and liberty; that when we are not coldly indifferent to such things we sneer at them, and that the sneer is about the only expression the newspapers and the nation deal in with regard to such things.”
- Mark Twain


Jay Gould was kind of the 19th century equivalent of the boys at Goldman Sachs.

And how did it happen that so many Christians have ended up voting for politicians who back the "Jay Goulds" and not the oppressed folks that Jesus sided with? Makes no sense to me.

Thanks, Mark Twain, for putting my thoughts into words more than a century before I thought them.

Thursday, July 08, 2010

Techno-Rant

I know my last post was kind of a rant on twenty-first century technology, but... Well, in the immortal words of Ronald Reagan, There you go again.

So y'know what I hate? I hate security questions. I mean really, really, really hate security questions. Okay, sure, they stem from a great idea: companies making your lives easier by allowing you to access your accounts online. LOVE IT!

(See, this isn't all about ranting!)

But in order for them to make sure it's you and only you who can access your account, they make you answer security questions. And heaven forbid you get them wrong, because... Well, I'm pretty sure that if you get them wrong...

It's not pretty.

I have it on high authority that after you screw up, they send the information to the people at the Security Question Headquarters. And the Security Question Headquarters people punish you for your inattention by scrambling up all the answers to all the security questions you've ever answered in your entire life. Or worse, by giving you entirely NEW answers.

"She said her favorite pet was DOG! DOG?!?!?! It's cat, you idiot! From now on, the answer to all of your questions is, "Police Academy IX!"

Fairly certain that's how it would go. So I really want to get them right the first time.

Problem is, though? They NEVER ask me anything that I have an easy answer for!!!! I don't watch TV, so I don't have a favorite TV show. Ditto movies. (Being forced to sit in a theater for two hours is my definition of torture.)

On the other hand, I have approximately a thousand favorite books and at least three favorite teachers -- but none that stand head and shoulders over the others as names I'd be able to recall under pressure.

My childhood dog went by two names -- one with an "s" at the end, one without. I'm guessing that whichever I picked as an answer, I would invariably pick the other one when I went back and tried to answer it again.

Childhood best friend? Would it be the first one, before she went off to parochial school and became somebody else's best friend? Or the one who came after? Or the neighbor girl, who was certainly my best friend whenever she let me ride her horse.

(Because I was fickle that way as a kid.)

But anyhoo. So today I'm online, signing up to make our car payments automatic. And I literally cannot come up with a question that has an answer from the questions on their list. And worse, they require not one, not two, but THREE.

And worse yet, when I signed up the first time, I did find a question with only one obvious answer -- my first school. (And there was much rejoicing.) But today, when I went back, I couldn't remember my password. So the system lets me change the password. (Because...wait for it... I knew the answer to my security question!)

But here's the thing: In order for me to change the password, it deleted that security question from my options! Their thinking: Well, if she's too dumb to remember her password, but she got the security question right? We've obviously made things too easy on her. Won't let THAT happen again!

So after much thought and swearing, I eventually picked one of the best friends, then one of the spellings of my first dog's name. Two out of three. Almost there!

For the last one, I pick "First boyfriend" -- a question I'd been avoiding because...well... He was a jerk. But desperation strikes, and it IS a question with only one answer, so I type in his name. Hit "enter." And get back,

We're sorry, but all answers must have at least four letters.


But...but... WAIT A SECOND! His name only HAS three letters! It is only THREE! LETTERS! LONG! What am I supposed to do, add a fake letter?

So now I'm sitting at my computer swearing at the mother of a guy I haven't seen in many many years for giving him a name I can't use to make a car payment.

This is what my life has come to.

I blame technology.