Wednesday, November 3, 2010

Another day, another chemo: Round No. 3



For today's chemo, we got assigned to the overflow room in the basement -- a big space with six recliners spaced around the walls, a small table with magazines in the middle, and no cell phone reception. It wasn't well set up for support people; Ben perched uncomfortably on a little stool next to me, but it was loverly having a nice long date with him. He and I are losing our twin look because one of us is getting male pattern baldness and has a weird comb-over look going on -- and it's not the male.

The session went fine; not much to report, except that I am now three-quarters done with the hardest part of chemo, Adriamycin and Cytoxan. Here's my patient's-eye view of the HazMat-approved administration of Adriamycin:



The big news is that yesterday, after weeks of pleading, pulling strings and making dozens of phone calls to have my many test results faxed, I met with one of the leading breast cancer doctors in the Bay Area for a second opinion on my treatment. (She had exchanged e-mails with me before I started chemo, concurring on my initial treatment plan of dose-dense AC.)

Dr. Hope is clearly brilliant and has decades of experience. She was also warm and thoughtful; she'd spent considerable time reading through my five-inch thick medical file and she spent almost an hour talking to me.

So much for the good news.

Dr. Hope was definitive that my cancer is Stage III and very aggressive.

She based that on both the number of nodes involved and also on the way it had managed to break down tissue barriers and spread into surrounding flesh once it was in the nodes.

She had several suggestions for making my treatment even more aggressive:

>Once I finish four rounds of AC chemo, I was slated to get four sessions of Taxol every other week. She recommends 12 weekly sessions of Taxol instead (at lower dosages, although the total amount will be higher). Several studies have shown this improves survival rates, and the lower dosages reduce side effects. Taxol's primary side effect is neuropathy, tingling and numbness in fingers and toes that sometimes does not entirely go away, so I'm definitely gung-ho about reducing that. But this will add another month to my chemo regime.

>When breast cancer metastasizes, it most commonly goes to the bones. A class of drugs called Bisphosphonates, which are used to treat osteoporosis, may help prevent bone metastasis. So that would be another addition to my regime. This may mean keeping my not-so-beloved port in for two more years.

>Auntie Flo has been continuing to show up on schedule every month despite all that poison flowing through my veins, which usually induces the old biddy to pack her bags and hit the road. Dr. Hope wryly said it looks like my body really, really doesn't want to enter menopause. She really, really wants me to stop menstruating stat, and so she wants me on monthly injections of Zolodex to accomplish that. That's so I can get started sooner on aromatase inhibitors, a powerful class of hormone-blocking drugs that only work on post-menopausal women.

>She feels my greatest risk for metastatic recurrance will last for 10 to 15 years and thus so should my treatments. Most patients get five years on the aromatase inhibitors; so now I'm looking at double or triple that. I've read that many breast cancer patients are noncompliant about taking them (it's a daily pill) because they hate the side effects, but I'm not going to go into that now. She also pointed out that five years from now there will be lots of new research results and so there may be other treatment/prevention options that we'd explore.

Today when I met with my own oncologist, Dr. D, she concurred with everything recommended by Dr. Hope, who is clearly a goddess in the field. Dr. D herself is no slouch in the brilliance department and also has been quite kind to me and generous in spending lots of time going over everything I bring up.

There is no question in my mind that I'm going to do exactly what Dr. Hope suggested. If she said I needed to hang upside down for an hour a day, learn kick-boxing or move to Utah, I would just do it. (Those all actually might be slightly more pleasant options than what she did suggest, with the possible exception of Utah.) The stakes are too high.

Perhaps you've noticed: not such a funny post today. I could barely muster the one joke about Auntie Flo (a quaint term I never have used previously).

As soon as I got home last night, I hit the Internet and it wasn't for election results. In the same way my tongue compulsively keeps probing a sore spot in my mouth, I feel compelled to look up survival rates every time I get told I'm at a different stage. But after I looked it up and had a few minutes of mild freak-out, I decided to drop that line of thinking.

Here are some words of wisdom from a cancer mentor who dealt with this a few years ago and has been a wonderful source of support and strength:

But may I say something about all these statistics? They can drive you crazy, but remember: those statistics aren't YOU. It's kind of numbers game, but these numbers are pretty general. I had a 20-25 percent chance of recurrence but I tried not to get too worked up about it because those numbers weren't necessarily me. You're in good shape, you have good health care, you eat well, you're otherwise healthy etc. It sounds trite, but ultimately the only statistic that really matters is 0 and 100.


So I lied before when I said Dr. Hope's being nice and smart was the end of the good news.

Actually, I recognize that I am lucky that so much research has been devoted to breast cancer so that there are more treatment options all the time. And I have a lengthy list of things to be grateful for: Mark, Ben and my fabulous friends -- and thank you for all the incredibly loving and supportive blog comments while I'm at it! -- really good medical care, good insurance, manageable side-effects from treatment, supportive employers. And I fully recognize that lots of cancer patients -- certainly anyone with Stage IV -- would trade places with me in a heartbeat.

I'm not excited to spend the next 15 years with a sword of Damocles hanging over my head; I'm not happy about subjecting my body to still more toxic treatments and their potential side effects. But I'm not going to focus on that. My attention is on doing everything possible in the here and now to combat this.

12 comments:

  1. CLIMBING SHIT STORM MOUNTAIN (from Larry and Sue too)

    Shit Storm mountain is the tallest mountain in the universe. Its literally built of shit. It makes Everest look like a pimple and the Andes like a grain of sand. No one wants to climb it. Its too shittty. But wouldn't you know it in the crap shoot of life Carolyn got assigned to climb shit storm mountain. She tried to avoid it. She was told if you ate green leafy vegetables you wouldn't get assigned. People that didn't smoke didn't get assigned. She did everything to avoid shit storm mountain. Carolyn played by the rules but somewhere the rules got screwy. Some anarchist messed them up. So here she is at the base of shit storm mountain knee deep in shit. As she has done so many times in her life she just puts herself in gear and buckles down to the task of climbing shit storm mountain. And since at several previous points in her life she has been able to leap tall buildings at a single bound she will not give up on shit storm mountain. She has done amazing things before. Who would have thought she would become an award winning business writer at a major newspaper with articles read by people around the globe? So she assembles her trekking team to climb shit storm mountain. Mark is leading the way with a deck of playing cards in his backpack just in case they come across a casino on the way up. Ben is there using the computer GPS to figure out the best route. So many friends are there they look a snake on the mountain. And fearless Boo Boo and Yogi are tucked in her back pack ready for the journey. She fights her way up shit storm mountain. At every plateau her optimism builds but then an avalanche of shit no one predicted comes down the mountain and she is driven back. The weather gets nasty. The wind is blowing shit everywhere. She is surrounded by shit. She is tired, depressed but she will not give up. She has a grudge match going against this mountain. Goddamn mountain get out of my way she yells and the echoes reverberate far and wide. If anyone can climb shit storm mountain it's Carolyn Said and we are all there cheering her on. Its not fair. Its not right, but it is what it is and she will make it to the summit eventually where she can look down on all the shit. Ah the summit. Where the air is clean. Everyone gets healthy and there is no shit! We know someday you will be waving at us from the top of shit storm mountain! Records against the odds will be made here. It will be in the history books. Edmund Hillary and Carolyn Said! The queen of shit storm mountain. We are with you every foot of the way!

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  2. Carolyn,

    I'm picturing whatever few cancer cells were left after your surgeries -- if there were any left at all -- as already dead and out of your system. -- Sue Troy

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  3. Wow. Carolyn, when I think of you making every right decision and pounding out those unwelcome cells, what comes to mind are Brian Wilson, Tim Lincecum, Edgar Renterria and the rest of the Giants. You're gonna win the Healthy World Series my dear friend, and it won't take 52 years!

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  4. Your courage and humor are awe inspiring. I love your doctor's name. Dr. Hope. I've been picturing you in a boxing ring against this thing. There you are with Dr. Hope in your corner. This Not So Big C guy doesn't stand a chance.

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  5. That's a really great photo of you and Ben! You wear your male pattern baldness comb-over really well :)

    I'm glad you are finding new strategies and keeping positive even while freaking out. Your mentor is right. Statistics don't mean much when it comes to your own body, habits, and spirit. Everyone is different and unique. The fact that you are grasping at life so firmly tells me that you still have a long life ahead of you, so don't fret too much. Enjoy the here and now and make plans for the future.

    Love Jordan

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  6. A bit more dump to assimilate, but I totally agree with the person who said that numbers aren't YOU. I have to confess when I first saw your blog I just assumed "Not So Big C" meant cancer as opposed to "Big C" Carolyn. Those of us who know you from the distant past may remember that "Big C" was a nickname for you, which I always assumed referred to your big heart and spirit. Now I think that was an apt assumption, as Big C Carolyn will always be greater than not so big cancer.
    Love, Judy E

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  7. Hey Wonder Woman!
    Keep climbing Shit Storm Mountain (LOVED that post, Larry and Sue!) and don't forget to keep looking for the pony at the top (you've heard that joke, right? It is the definition of an optimist).
    Yes, the aromatease inhibitors are certainly shit snowflakes, but they are better than the Tamoxifen, which is a shit snowdrift. Your injections to chase off Auntie Flo are rather certain to be shit whiteouts, but remember: you will survive them, and those of us with snowshoes will show you how to slog until you find your way. Which you will. I promise.
    Keep climbing, Sweet Carolyngirl. And, as Thich Nat Han says: "Breathe. Go slowly. And smile."
    With avalanches of love from Sherpa Lori Leigh (and that's no shit!)

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  8. Not much to add to this wonderful thread of comments. Larry, your story is great....maybe a title for a new book, CLIMBING SHIT STORM MOUNTAIN. I kept finding myself picturing a beautiful outdoor shower at the top!
    Carolyn I just want to add that when I've worked with parents over the years who have children who are sick or have a disability, the ones who already know how to advocate have a real advantage, and the ones who never learned to speak out and ask for what they needed, found courage when it came to helping their children. It's a great thing that you and Mark know how to get top notch opinions and also that you have the courage to let friends and relatives know what's going on and what you need. I learn a lot from reading about your life....so thank you.

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  9. I'm so proud of you, girl. Lots of hugs coming your way from the building with the big clock tower that doesn't work. :)

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  10. So, one thing you forgot to tell us you are grateful for. You are indeed a VERY lovely looking woman. If one is pretty enough, sc___ the hair, I say. The second thing in my estimation that you forgot to put into words to be grateful for is that you are also such a SMART woman - to have gotten ahold of Dr. Hope and that extraordinary amount of expertise. I miss you a lot, and I hope we can go for a walk together soon as you are up to it.

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  11. Not too crazy about that sword over your dear head for the next 15 years either, but don't worry, it'll be a small one. 15 years in California with a little bitty "not so big c" sword is still probably better than Utah. And we'll have a party on the day the stint is over, and we'll dance for another 15 with you! Love you, Susan

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