Sunday, February 17, 2008

some days, normal would be good enough

Radiation is over.
Chemo is over.
The intestinal blockage that started in the middle of January seems to be long as I don't eat anything stupid.

Now, if I could just count on waking up without being dizzy, or eating whatever I wanted, or being strong enough to do more than one thing on a weekend.

Walking to the uptown E train from Madison Square Garden, then transferring to the uptown 6, then walking six blocks to Sloan last weekend in the wind and cold had me breathing hard. Reversing it all and walking back to Hunter College to catch the downtown 6 and transfer to the downtown E nearly took me out. By the time I got back to the hotel, I needed real food, fast, or I would never have made it through group judging.

Yesterday, I took the dogs for a half mile walk.
Today, I am dizzy whenever I get off the couch.
Good thing I can write while flat on my back.

Wednesday, February 06, 2008

CRC Awareness versus Cancer awareness--and all those other ribbons!

I originally published this post on August 13, 2007, in The Semi-Colon Club yahoo! group.

--------------August 13, 2007--------------
Tony Snow.
Sharon Osbourne.
Barbara Barrie (from TV, movies and Broadway--who did a CRC awareness ad campaign that is up in our industrial health office to this day with the tagline "I almost died from embarrassment")
Tammy Faye Baker (deceased).
Leroy Sievers
Anne Rodgers Clark (dog show judge who frequently appeared in the panels judging dog shows on Animal Planet, deceased early 2007)
Farrah Fawcett (diagnosed last summer)
Darryl Strawberry.

There are lots of famous people who've had colon cancer...famous in their own right, not because they are someone's wife, husband, mother, father, sister or brother.

But that said, the face of colon cancer is staring back from the mirror everyday.
YOU are the one who can raise awareness, day by day, one person at a time.
It isn't about having a famous spokesperson; it's about BEING the spokesperson as only a survivor can be.

What Lance Armstrong did was raise cancer awareness. What he and LAF continue to do is challenge the people who decree what will and won't get funded, so that continuing research stays funded. THAT, we all need, regardless of diagnosis.

I wear a yellow wristband, not a blue one. I wear a blue ribbon on my ID lanyard at work. But most important, I speak up and out, where ever and when ever I can, where ever it's needed. I make guest appearances at support events.

I became a face of cancer for the people I come in contact with, I help make it real. I educate about the signs and symptoms in everything that I do. One person can touch hundreds of other people...or not. That part is the only choice we have in fighting this disease.

Colorectal Cancer Awareness

It's going to be March soon...another Colorectal Cancer Awareness month. I wrote this piece on March 3, 2007, and published it to The Semi-Colon Club, a yahoo! group. I will be just as glad to see March, 2008 as I was to see March, 2007, but unfortunately, this piece is still appropriate today, almost a year later:

--------March 3, 2007-------------------
It's March, and I'm glad to see another March. In March 2004, I knew that I was sick, that something was wrong--but I didn't know yet that I had Stage IV rectal cancer. So I watched all the CRC awareness messages and thought "well, whatever is happening, at least it isn't cancer."

Not so much. By April 20, about 8 weeks after my symptoms started, the doctors were getting suspicious. By April 30, they knew--and by May 3, I was in the first treatment of what would be 16 rounds of FULFOX + Avastin, and starting on a journey none of us wants to take.

And that brings me to the reason for THIS post.

Like many of you, I get calls to action and emails and all sorts of CRC advocacy awareness messages. I answer them...I advocate locally, I work with survivors, I participate to the extent that time and life permit. But for some reason, some marketing advisor somewhere seems to have convinced nearly every advocacy group to put forward the story of some young person who has lost his/her life or who is
valiantly fighting this disease--the slant being 'isn't it terrible that someone SO YOUNG should have to face this disease?'

Yes, it is. HOWEVER...

It is terrible that ANYone, of ANY age, married or single, parent or childless has to face, fight and maybe deal with dying from CRC. CRC is preventable and treatable, and I understand the need to emphasize that the prevention needs to start MUCH earlier than age 50, and be available to people regardless of age, sex or insurance coverage. But unfortunately, IMO, it does every CRC patient a disservice to only
focus on the tragedy of getting diagnosed and/or dying young. The TRAGEDY of having to fight and possibly die from a preventable disease doesn't discriminate based on age...and I'd like to ask all of us, in our advocacy, not to base our education approach on pity-based-on-age. If we aim our education at 'look at what happened to
this poor young person,' doesn't it follow that it's somehow LESS bad that it happened to someone older? That just fosters even more dangerous misconceptions!

It is not inherently MORE terrible or MORE tragic to be a patient in his/her 20s than it is to be a patient in his/her 30s, 40s, 50s, and on up. It is not inherently MORE terrible that the patient is parenting young kids (vs. parenting older kids, putting kids through college, or being childless but part of a loving family of siblings, neices, nephews, or being on the other end of the equation having to
care for aging parents.) It is NOT more terrible to become a patient at the beginning of your adult life than it is to be diagnosed at the height of your career, or diagnosed at the start of what you had hoped would be an active retirement.

I was 48, at a career high point, almost done putting my oldest nephew through college and gearing up to fund his younger brother's first year of school, trying to help my parents negotiate my father's dementia diagnosis, working with two promising dogs, and shifting gears financially so that I could retire betwee 52 and 55. My
diagnosis meant that I had to give up one of my dogs, lose out on all sorts of special family occasions when I was too ill to participate, give up the fast track I'd been on at my job, and in some cases leave my parents to sort out their own issues (not always in a good way.) Because of the costs of fighting CRC, retiring at 52, or evne 55, is now out of the question--if I live that long--unless I have to retire on disability (not really the retirement I've always planned...)

When against all odds, the surgeries and chemo that were supposed to help me manage the end of my life actually *worked* and the doc were able to put my CRC into remission, it was like getting a second shot at finishing some of the things I'd been unable to do before the diagnosis. I was able to take a tragedy and turn it least for the moment. But my story is no less tragic than someone who was
diagnosed at an earlier age, or someone who was older, or someone who has kids living at home, or someone who never married. All of our stories are valid. None of them is more tragic than another--they are just different.

It is terrible that any of us had to become a patient, whenever and under whatever conditions it happened. But all of us have the ability to tell our stories, and make a difference, whatever those stories are.

So please, in our efforts to advocate and educate and gain support for our goals of increasing funding for CRC research and screenings, let's not keep reinforcing 'the tragedy of dying young.' The TRAGEDY is that ANY one has to become a CRC patient, and the TRAGEDY is that anyone of any age dies because diagnosis was too late, or treatments failed. We all need to tell THAT story...and stop focusing on the
heartbreak of the diagnosed young parent as the way to make a difference. The difference we can make as advocates is that CRC can affect ANYone, even thought it doesn't have to affect anyone...