Tuesday, February 17, 2009

To The Bone

He was not going to wear the suit I bought him for Christmas to my funeral.

My mother wasn't going to put her entire family in the ground.

These things were not going to happen.

My appointment with the Captain the first week of February didn't go so well. Having started the new super-chemo pills (after lots of financial wrangling) I guess I had wanted some sort of measurable improvement, some magic sign that this stuff was working. My bones hurt but otherwise I was feeling OK. The redness wasn't going away. I ended up on the Internet and looked up "bone pain". When cancer and bone pain are mentioned in the same Google search the results come back "Metastasis".

At the appointment I explained my symptoms. The Captain examined. He is not a man prone to fits of glee, but he seemed defeated. It wasn't my favorite day. Words like "terminal" and "will" were bandied about. My tears were thick and hot and absolutely silent. We would have to do a new round of scans, he said, to re stage. To re stage from IIIb to IV. From possible to impossible. Bone pain was not a good sign, he said. We would wait and see.

Thing is, when you're thirty-ish, that sort of conversation doesn't even enter into your realm of even improbable knowing. That appointment was on a Wednesday. The scans were scheduled the following Wednesday. I have known long weeks in recent memory, but never one as long as that.

Who gets the guitars? This is where I keep the bonds, the checkbook, the account numbers. Anything will go to my Christopher, won't it? Please make sure, Mom. I've always wanted to go to Paris in the summer...and Spain. The college debt, it just goes away doesn't it? How do you do everything that needs to be done, feel everything you always thought you would have time to feel? Those days after my appointment were a tangle of questions strung on a wire of impossible urgency. How do you tell someone how much you love them? What words can be used to explain how badly you don't want to die? How do you bear the weight when someone tells you how badly they don't want you to die either?

It is a strange thing, staring down your short life and realizing you aren't quite ready to give the damned thing up. It happened while I was folding the laundry the Sunday before the bone scans. We all don't want to die, yes, I get it. But we don't ever think of it really, or at least I never did, in more than a philosophical sense. If you have kids, I am told, you tend to more fully realize your mortality. I guess if you have big piles of money you may think on it in a financial sense, but that may be the extent. I was just putting away the socks and I realized in an absolutely basic, practical, unemotional way at a precise and measured moment I didn't want to not be here anymore. I just wanted to still be here.

Forget every loss. Every single one. The hair. The breasts. The toenails. The kids I may or may not be able to have because of the damned chemo. Screw the pain. Pain is pain. It is unimaginative and boring. Scrap the frail myth of security or safety, the invincibility of youth, the permanence of beauty. Those things are long gone. My skewed notions of fairness or goodness are weeks past righting in any Christian sense. These breakable parts of me have broken. Crumbled to dust. But what is left of me cannot bear leaving the one I love. Simple.

It's silly really. I've had cancer for months now. It seems I should have had this epiphany weeks ago. And I have. In a very billowy-ray-of-light ain't-it-good-to-be-alive kind of way. I want to live, however, without any exceptions. No breasts? I'll take it! Armless, legless, skinless? Fine, yes, sign me up! I will scare little kids, but OK! I will not leave. I want to get up every morning. Period.

All of the niceties, the fringy, lefty do-gooder-ness of my general makeup, means nothing if I am not here. What I want to do will have to wait until I win the fight for the right to do it.

Last Wednesday I went in for bone scans. And I prayed as much as a godless heathen can. There are no atheists in foxholes. The white light will beat it.

I also went in for my radiation tattoos. The Captain thought it best to line up the big guns, as it were, if heavy artillery were needed.

I can officially update the worst day of my life. It might seem to the ordinary onlooker that July 22nd would be the obvious choice. While being diagnosed with Inflammatory Breast cancer was a pretty bunk-ass day as bad days go.....February 11th may have beaten it out by a nose. All that work all that loss all that pain all that all that and for what? One long protracted awful goodbye?

My bone scans came back clear at 12:30 pm on February 12th. The nurse said "The bone scan came back clear " and the invisible weight broke away. I held onto Chris in the afternoon-lit kitchen, refusing to let go, as if somehow that miracle would evaporate if I allowed a space between us. It was, after all, the thing I was being granted the ability to do. I was given the opportunity to fight for this. I am wary of all good news. As I have said before...you never know...the light at the end of the tunnel may be a train. I will fight for this. For however long the fight will have me, unconditionally.

So I started radiation today. 28 days, every day, maybe twice a day. Theoretically, the tumor will get smaller, it will melt (!) the cancer in the lymph nodes. This will make it possible to do surgery. There are absolutely no guarantees, in anything, ever. Cancer is a giant mystery. But so is living. When they collide and start throwing down, results may vary. It is part of the game.

Love those you love. Tell them you love them. Do not suffer fools. Do not make excuses. Life is too short.

Life is too short.

Really. No bullshit.


pentekno2 said...

When you messaged me that your bone scans were clean - I dont know that Ive felt as relieved at that as I have anything in some time. Im sorry more than anything that the chemo was for all intensive purposes - ineffective. My heart was breaking with every bit of bad news that you were letting me hear. Im there in the foxhole with you though. Some of our friends could tell you that I probably think about you and your well being moreso than even my own these days. I get passing senses of guilt for things beyond my own control. I still have another scan to get in a week or so, I am confident that it will be fine though. Then lifelong checkups. Thats what frightens me the most about all of this. Remission. To spend the rest of our lives in 'remission', like it could come roaring back at any moment. Like its just a helping hand away from trying to fuck and destroy everything weve worked so hard for.

Oh well. Ive gotten off subject. Keep in there. Were going to look back on this one day with new eyes.

Chis Burkhart said...

I know it may be silly one of your regulars posting in your blog. I never see you outside of P'Otts, and more then likely outside of that bar we never would have met. But I am very glad we did happen to cross paths. Being a 'transients student' for the last eight or so years, the little things around me have helped me keep me sanity. And when I say simple things, I mean things like walking into the bar and having you say 'double-vodka tonic,' is, something I know I can look forward to every week because it has become a constant. And that has been a blessing to me.

Please remember, that life is a blessing and not only is it worth fighting for, there are people who are standing along aside you willing to fight and and support you.

I know it may seem cliche to quote Dylan Thomas, but I really don't give a damn:

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.


Hope and prays,
Chris 'Mongo' Burkhart

lilrant said...

"Scrap the frail myth of security or safety, the invincibility of youth, the permanence of beauty."

A bittersweet, beautifully crafted, truth.

Wishing you continued "good news."

sarah said...


worth a look, it opened my mind a lot.
Love your music and wish you the best!

The B - Log said...

Keep truckin' girl, you're still here.