Monday, May 18, 2009

Comment to "Let's Talk About Cancer"

I just left this comment on AC360, Anderson's Cooper's blog at CNN.
AC360 correspondent Randi Kaye blogged today and asked for comments in her post Let's Talk About Cancer.

-----------------This was my comment:--------------
‘Farrah’s Story’ was gritty, dramatic, and real.
I like her docs’ description of cancer as terrorists; that is exactly what Stage IV cancer feels like.

I was diagnosed with Stage IV rectal cancer and extensive mets to my liver, on April 30 2004. The gastro doc knew during the colonoscopy two days earlier, but diagnosis date is the first appointment with the oncologist.

I wasn’t one of those people who ignored years of symptoms–I only had symptoms for about 8 weeks, and they never included any bleeding or other red flags. My most glaring symptoms were sudden weight loss and sudden intolerance for dairy (so I knew something was wrong.) My routine bloodwork was off the charts, so the docs knew something was wrong. And everyone moved fast; everyone took me seriously. I was only 48. I’d had a decade of FOBTs as part of routine physicals and DREs every six months as part of well-woman exams–all negative. If I’d waited until I was 50 for a screening colonoscopy, I’d be dead now.

The oncologist gave me his last appointment of the day on a Friday. My sister-in-law was upset that after explaining his plan, he didn’t tell me the staging. I explained that if he was correct that the cancer was in my liver, then he didn’t need to say the stage out loud–I was stage IV. What my oncologist, a terrific doc and good friend did say was that because I was young and otherwise healthy, we might win several battles–but we wouldn’t win the war. In other words, he made clear from the beginning what I was up against, that this diagnosis was fatal. No false hope, no miracles. And while I’ve responded very very well to treatment, It’s still fatal. I can’t relax for one second, because believe me, cancer and its microscopic terrorist cells aren’t going to relax. No breaks, no holidays, no truces. Once you start dancing with Stage IV cancer, it’s a dance marathon and you can’t ever leave the floor without very careful planning!

I could have died every treatment in the beginning. But I didn’t die; I improved. Against all the odds, I responded very well to chemo, and I worked through the whole thing. After nine months of treatments every other week, I qualified for surgery to remove the primary rectal tumor and place a pump that would directly infuse chemo into my liver. After a year of those treatments, I qualified for liver resection. After each surgery, I went back to work and after the liver resection I was cancer free (NED) for 21 months. I had a recurrence diagnosed in Dec. 2007, was treated with radiation, chemo and another surgery in 2008, and have been back at work since Sept. 2008.

Last month, I marked the fifth anniversary of my diagnosis–five years of overall survival as a Stage IV, someone who’d had an original prognosis of 18-24 months. My success makes my local doctors happy (along with all of the docs in NYC, where I’m also treated), but some days it fills me with questions. Why did I make it–but not Leroy Sievers? Not Randy Pausch? Not my friend Brady who is right now in hospice only 3 years after his diagnosis? They call this survivors’ guilt, but it’s not all that. I work in preclinical research, and I want a reason, I want to know why. I want to understand better what we don’t know. Our newest treatments are gaining only months on a disease that steals years, and steals from far more people than the new treatments can help.

I’m again cancer free (NED), and this time we all hope it lasts longer than 21 months. The cancer hasn’t returned to my liver, and I’ve had enough chemo and radiation to last me several lifetimes. While I’ve been dancing with this cancer, I’ve lost over two dozen friends who weren’t so lucky with their chemos or their surgeries or their docs or their diagnoses. I have to tell newly diagnosed cancer buddies that my mileage with treatment may not be their mileage–that in cancer even more than gas consumption, mileage varies.

But in the end, you can either sit still and listen to the music, or dance. I will keep dancing, keep taking evasive action as long as the good days outnumber the bad ones. And when the bad days outnumber the good ones, I hope for the grace and sanity to recognize that and be in harmony with my expectations.

What I hate is the platitude that I might get hit by a bus. Yeah, I might–but the sign on the bus that kills me is a lot more likely to say ‘Cancer’ than ‘South Ave Connection.’ I am a Stage IV, and I am a long way from out of the woods yet, if I ever will be out of the woods.

So here’s a salute to you, Farrah, for being so incredibly brave to share your story so that people who don’t get to live this first-hand might understand. She said something amazing that really resonated with me: I’m great…and I’m fighting for my life. What are you fighting for?
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3 comments:

  1. Once again, impressively well stated. Keep it up and I'll keep reading, and of course spreading the word 9and dancing, or in my case surfing).
    Aloha
    RH

    ReplyDelete
  2. Thanks for the compliment, RH.
    I've always envied surfers--living inland, the best I could ever do was water ski, and I was pretty lousy at that.
    But I like knowing that you're out there catching waves. WTG!

    ReplyDelete
  3. I've never had anybody tell me that I won't "win the war". You're lucky you've had that sort of honesty. It took me a long time to drag out any sort of real answers from my oncs and even then they continued to tapdance around my direct questions. I've basically had to read between the lines and draw my own conclusions.

    Being in touch with you has helped. And this latest recurrence - much sooner than expected - has helped me rearrange my life in a way that feels more honest to me.

    I also hate that damn "hit by a bus" platitude. Do people not realise how insulting it is? It's a whole other story when you can actually see the bus coming at you...

    I haven't seen Farrah's Story yet. Will check it out.

    ReplyDelete

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