Sunday, May 25, 2008

The end and the beginning....

16 to 11.
The boys I watched grow up on a lacrosse field, the boys who became young men who I am proud to know, got outrun and outgunned today by a style they'd never seen before and a team with a bigger 'A' game.

I couldn't be there.
I couldn't take a seven hour bus trip, spend three hours sitting on bleachers in a stadium, and then take another seven hour bus trip home.
I watched the whole thing on CSTV, the quick shots, the beautiful blocks, the effortless plays, the razor sharp slicing of the NYIT kids to the net. I watched the navy blue uniforms start their celebration with a minute to go, knowing that Lemoyne couldn't possibly pull ahead of them in a bare minute. I watched them swarm the field, the way that green uniforms had swarmed the field last year in Baltimore.

I wanted to tell them, all of them, how proud I am to have seen them play, seen them grow up. I looked at my liveSTRONG wristband and knew that four years ago, the idea that I'd ever see this day was just an idea, a dream.

Now, Beam is taller than I am, and when he hugs me I want to make every hug last until I can't breathe any more. It's the same with A.--when he hugs me, I never want to let go.

I want to tell them it's not about winning--it's about how you play the game.

Except I think tonight, for some of them looking at their last game, it might have been about winning. Someday, I hope they realize that just getting to play at that level is winning. Storming the field carrying the trophy is just a perk--the final score is that they showed up.

I am so proud to know them.

Sunday, May 18, 2008

who survives cancer?

Today was the Komen Race for the Cure in my town, and 1000s of people (I'm not kidding, maybe 7000 people all together) ran in two separate walk/runs to raise money for the Susan G. Komen breast cancer foundation.

One thing that strikes me about races like this is that there is no blurry line at all among the participants between people who are running in celebration of someone else's life and struggle, and someone who is an actual breast cancer patient or survivor. If you have cancer, or had cancer, you are a survivor. If you haven't had cancer, you're a supporter. Simple, and straight to the point.

I belong to more than one online community that supports colorectal cancer patients, and in those communities, the line between the person who has cancer (the patient/survivor) and the person who supports them (family member or caregiver) gets awfully blurry sometimes. And while I know it isn't the best side of me, I can't help but get a little angry when someone who is a supporter or caregiver identifies him or her self as a 'survivor.'

Caregivers and supporters, the loved ones and friends of cancer patients, have a tough journey--I don't debate that. I've been a caregiver for loved ones with other illnesses, and I know that road. Perhaps because I know it well, it's easy for me to recognize how different that road is from the road I walk now, as a cancer patient and survivor.

A caregiver can never truly understand what a survivor deals with every day. I know some caregivers will hate that statement--but hear me out.

A caregiver can, given a respite, walk away from and be free of cancer world for awhile in a way that a patient/survivor never can. That's a respite denied to survivors. I see cancer in my mirror, in my body, in the way I feel and the things that hurt and the things that don't work the way they used to work, and I see that every minute of every day. There's never more than a minute of time when I'm able to 'forget' about cancer. There's no escaping it--cancer is part of me, part of my body, for the rest of my life. Even when I am lucky enough to be NED, the ravages of chemo and surgery, the wounds from the fight, are present in my body, things I have to face and deal with. Caregivers, unlike patients/survivors, can walk away.

Caregivers do not experience the drugs dripping into veins, the pre-surgical fears, the post-surgical pain and physical therapy in the same way that patients do. A patient/survivor has to make the decision, the conscious choice to put one foot in front of the other, to accept that day's treatment--and we have to make that choice every damn day of the fight. Caregivers may have to agonize with us as we make the choice, but they cannot make it for us. They cannot take on our fears or our pain. Those things are ours alone.

Today, I missed my nephew's graduation from college and most of his celebration BBQ. I had to pace myself, you see--I had to measure out the pain meds so that I'd be most awake (and able to drive there and back), while at the same time giving myself just enough pain coverage to be able to go to the party and hug everyone and tell Beam that I'm proud of him. And make him promise to eat next weekend on game day. And make his friends promise to be sure that he eats. And tell them all how proud I am to know them, to have watched them all grow into responsible young men.

I was in pain from the moment I got dressed, through every moment of driving there and back, for every second of standing and circulating and being in that room. Every hug was a treasure and torture. Every second was an effort of will. What caregiver can know that agony? And how dare they present themselves as if they could?

I am a patient. I am a survivor.
If you are a caregiver and a supporter of someone who has cancer, or any other illness, you are a special person, traveling a difficult road. But it is not the patient's road. It is not the survivor's road. Please do not present yourself as taking my journey. You cannot take my journey--I hope to the goddess that my journey never becomes yours. I wouldn't wish this trip on anybody.

Thursday, May 08, 2008

27 days...and then back in the world!

How do you blog about 27 days in the hospital? I was admitted for a pre-op test on April 1 (a happy April Fool's Day colonoscopy.) April 2, the anesthesia guy came into my room early in the morning, and the last thing I really remember is 'scooch a little closer to me on the bed,' and then an epidural, and then I woke up in PACU, more than 12 hours later.

It was a cast of thousands surgery, a harder surgery that took more finesse and had a greater chance of failing than the colorectal surgeon initially wanted to do--but I had second thoughts after he explained the pelvic extenteration, and asked him instead to do the bladder-sparing surgery the urologist had described during my pre-op visit. And when it worked (yeah, it appears to have worked), his Fellow showed up in PACU saying, through the morphine has, 'I just wanted you to know that you still have a bladder.'

There were good things...and bad things. There were twists and turns. I was in hospital for 17 days, released for 5, and then readmitted for another 10 days after I spiked a fever. I saw a whole class of Fellows rotate out. I discovered all the variations of the hospital menu--why is it we can send a man to the moon, but we cannot serve decent hospital food? ;-) I met wonderful nurses and nurse assistants. I spent three days in pediatrics, and learned about the 'candy cart.' I made my doctors and nurses laugh, regularly (that's me, the last comic laying down.) I sipped my water and juice from paper cups with a straw that had a little paper umbrella on it (thanks, Cheryl!)

While I was in the hospital, the world moved on. I had a poetry reading in Syracuse, and won cash. I wrote in my little PDA, everything that happened, but I still have to sort it out. I got a lot of email, most of which got deleted.

And now, out for good (fingers crossed, still no fevers), all I want to do is be able to walk all the way from Madison Ave. to the Met, maybe even to the park.

I just want to be normal again.
But maybe that ship has sailed.