Thursday, November 18, 2010

Chemo No. 4: "The last of the worst"

“Um, I don’t want to alarm you,” I said to my friend Jan as we left the pharmacy yesterday, “but do you have a bag I can hold just to have handy on the ride back home? I’d hate to have anything happen to your nice car.”

She understood exactly what I meant without my spelling out the icky details.

Yesterday was my final session with the sledgehammer chemo drugs Adriamycin and Cytoxan – “the last of the worst,” as Mark put it. It was also my nastiest bout of nausea yet.

Both drugs have evocative histories – Adriamycin, belying its ugly side effects, is named after the beautiful Adriatic Sea. It was derived from microbes found in the soil outside an 13th century Italian castle, Castel del Monte.

Cytoxan is a derivative of the mustard gas used to grotesque effect in World War I. Every time I get it, I can’t help thinking of “Dulce et Decorum Est” – “Gas! Gas! Quick, boys! — an ecstasy of fumbling.” Mercifully, I don’t have the full terrors of what comes next committed to memory, but a single reading of the poem makes you think you’re insane to voluntarily have that stuff injected in your veins.

Both drugs have been major cancer-fighting agents for more than half a century. That underscores that in fact some cancer treatments haven’t changed significantly – what has changed is the calibration of the doses, and (very luckily for me) the development of much stronger and more effective anti-nausea drugs.

Despite those drugs, I spent a very uncomfortable afternoon and evening (although thankfully I never needed that bag I kept handy), but then I went to bed, slept all night and woke up with just my standard day-after mild queasiness. Somehow it felt appropriate for my final AC that I got the badge of honor of the symptoms everyone most associates with chemo.

And I am relieved that I’ve made it through the worst part of chemo.

Part Two will consist of 12 weekly sessions with Taxol, which doesn’t cause the same gastro-intestinal problems as AC. It does cause exhaustion, something I’m already feeling plenty of from the AC. By 6 pm every day, I feel as if a giant hand is pressing me down on the couch and my brain has turned into a bowl of mush.

Taxol’s biggest side effect is neuropathy – tingling, numbness and sometimes pain in the fingers and toes. Michelle, my nice chemo nurse yesterday, said that virtually all Taxol patients experience some neuropathy. “You’ll notice you’ll have trouble buttoning your clothes and you’ll start dropping things,” she said. “Your feet might feel like you’re walking on coals.”

But neuropathy is usually not permanent for people like me who get reduced doses over 12 weeks, she said. If the symptoms get too severe, my oncologist will temporarily suspend treatment until they subside. The worse the neuropathy gets, the higher the chance that it will stick around. One of the cancer center doctors is an acupuncturist and I’ve started treatments with her to try to lessen its impact. They are pretty good there about “integrative medicine” – incorporating Eastern as well as Western treatments.

When I saw my own oncologist Dr. D yesterday, I told her how anxious I’d been feeling about what Dr. Hope conveyed (BTW, Dr. Hope was compassionate in her presentation, she had a perfectly fine bedside manner; it’s just that the information she had to share was something that no amount of kindness could soften).

Dr. D said simply: “Well, you’re young and we’re doing everything we can.”

I am starting to emerge from my two weeks in Freak Out City. For one thing, I just can’t live with that heightened level of fear. For another, the things people keep telling me are slowly sinking into my mush-like brain.

As someone who has a hard time living with not-knowing, I really took to heart this beautiful quote from Rainer Maria Rilke's "Letters to a Young Poet" that Lori from C Squad posted on yesterday's comments:
Have patience with everything unresolved in your heart and try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don't search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future,you will gradually, without even noticing it, live your way into the answer.

My brother-in-law Richard, who recently emerged cancer-free from his own grueling chemo treatments, had these words of wisdom about the statistics I keep harping on:
I feel about cancer stats the way Mike Ditka summed up his interest in the past -- "it's for cowards and losers." Though I abhor his neanderthal politics and sell anything antics, Coach D. was right on this point. Forget the charts and probabilities. You are doing great. You have taken some pretty heavy blows and you're still riding your bike and having positive experiences every day. I can't say why an information junkie like me never even was tempted to look up my odds, but I'm glad I didn't. I always doubt actors or writers who say they never read a word of their reviews, but some must be telling the truth. It's how you respond and your body's strength that will matter, not the general population of women who share this burden.

It is really good that you have the blog to work through your fears, but screw the statistics.

(And Mark and I used to memorize all the ballplayers batting averages as kids). But like a slot machine, each at bat, each pull of the lever is an independent event, just like each cancer.


So screw 'em indeed. I’m me, not a statistic.

10 comments:

  1. Wow, only two days and you're already peeking up out of the doldrums! The support of friends and family is a powerful thing. Keep up the great work! You ARE you and nobody else.

    Love Jordan

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  2. Dear Carolyn: couldn't sleep...read your latest...YES...you are NOT a statistic...
    What you are...is a POET.
    love
    sue

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  3. So glad to hear you're past "the worst" that chemo has to throw at you.

    I've been thinking about you a lot lately, and always appreciate reading your updates. I'm sure it must be a cathartic process for you, but for those of us on the outside, it's both a reminder of what an amazing writer you are and a gift that you're sharing this part of your life with us.

    I just found out today that my best friend from high school is in Houston for chemo (so much for all of us being instantly connected; somehow I missed the Facebook post) and am still shell-shocked. I'm going to pass along a link to your blog; I hope it'll help him as he deals with what must be an exhausting range of emotions. So again, thanks for sticking with this project.

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  4. Carolyn, I've been thinking not only about the grace that's coming through this situation via your blog, but the vehicle through which it's occurring . . .

    You are a writer and a reader. Words are a gift to you, and your words are a gift to the world. You bless us--those who love you--by writing about and sharing with us your experience with cancer. This way, we feel connected to you. You share with us through your words--your beautiful, funny, heart-opening, inspiring words.

    And then, so many of your friends share back, loving you through THEIR words. And your friends are such gifted writers!

    I continue to be impressed by your vibrant life-force and your wonderful spirit, my friend. I continue to be moved by the out-pouring of love from your community. ~ Erika

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  5. If you need some pleasant associations for Taxol, here goes. It's made from the Pacific Yew, which is a cute little shrub with lovely red berries. Many East Coast houses have yew shrubs outside the front door, because they stay green in winter and smell pine-y. Can you think of the Taxol as some kind of Pine-Sol rinse that is mopping up the A and C part?

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  6. I'm glad you are emerging from the worst of it. I am picturing your week ahead of celebrating Thanksgiving with your friends and relaxing. Now that I've seen your house, I can more easily picture you at home, curled up reading a book and tending to your kitties.

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  7. Getting ready to give thanks for friends and family - you in particular who are beloved, gifted, gritty, funny, ruggedly sane, a tad outrageous and healing - all at the same time. Enjoy the holiday, Carolyn! x0x0x0x Susan

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  8. Great post, Carolyn. Especially liked the Rilke quote. But mostly liked you. Enjoyed hearing Richard's voice too. Hang in there you are wonderful.

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  9. I would love to hear how you are doing whether it's event driven or not. You don't have to stay away from the blog just because you don't feel like writing exquisite prose. It could be a short note, a picture of you waving a smiley face flag or wearing a really weird wig, or not, and a wan smile that says you know we are still thinking about you.

    xoxoxoxo

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  10. To Be a Part of a Collective or Be a Hermit January 25, 2011. (from Larry)

    As someone with some severe disabilities I've been a part of support groups and know a little about what you are dealing with. Poor Carolyn your love of people and the human collective makes you want to be part of the cancer community. The desire to help others is built deep into your DNA. But some times the information you get in these situations makes you want to be a hermit and not hear about it. Hermitting has its advantages but over the long run its too isolating. Engaging in all conversations seems natural till you get hurt by them. All of this is a very hard thing to balance. I have two things I go by in my world. One is the give and take ratio. Some people were very needy before they had cancer and the cancer amplifies it. They need therapy but often won't get it. They will take all the support you have but not give you much in return. They will suck your support ability dry so you don't have it for other people that have a better give and take ratio. Don't get in prolonged conversations with these folks. Its dangerous for your mental health. The other thing I watch for is CNC - control negative conversation. If I communicate with deaf people who start telling me how my severe hearing loss which will probably make me deaf in my life time is not such a bad thing I politely cut off the conversation or fade away. If someone starts telling me about their aunt who died of asthma I give a little support but take out my inhaler and go away to use it. I've developed kind of a radar over the years that isn't always as accurate as I need it to be but it helps me know if a conversation about my disabilities is going to leave me more depressed than when we first started talking. Don't feel like you are deserting people. You have to take care of your own mental health first in these situations. You are wounded and need healing energy not more pain. Its the constant struggle to be part of a collective or be a hermit. Sigh. You'll learn it too. Its unfortunate that you have to but you'll do it. Its another life skill you will master like you've mastered so many before. Take care of yourself first so you can take care of others.
    love
    Larry

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