I like this poem. My experience is certainly not this dire, especially these healthy days; but the awareness becomes just as sharp.
What you realize when cancer comes
You will not live forever--No
you will not, for a ceiling of clouds
hovers in the sky.
You are not as brave
as you once thought.
Sounds of death
echo in your chest.
You feel the bite of pain,
the taste of it running
through you.
Following the telling to friends
comes a silence of
felt goodbyes. You come to know
the welling of tears.
Your children are stronger
than you thought and
closer to your skin.
The beauty of animals
birds on telephone lines,
dogs who look into your eyes,
all bring you peace.
You want no more confusion
than what already rises
in your head and heart.
You watch television less,
will never read all those books,
much less the ones
you have.
Songs can move you now, so that
you want to hold onto the words
like the hands of children.
Your own hands look good to you.
Old and familiar
as water.
You read your lover's skin
like a road map
into yourself.
All touch is precious now.
There are echoes
in the words thrown
before you.
When they take your picture now
you wet your lips, swallow once
and truly smile.
Talk of your lost parents
pulls you out, and
brings you home again.
You are in a river
flowing in and through you.
Take a breath. Reach out your arms.
You can survive.
A river is flowing
flowing in and through you.
Take a breath. Reach out your arms.
-Larry Smith, from Remains
Wednesday, May 30, 2007
Friday, May 18, 2007
Fear
Today's CNN home page features the headline Cancer Fears Self-Fulfilling, and I was immediately curious. I was wondering whether it would say that people like me, who have had cancer and now have a recurring dread or even terror of its return, might actually hasten bad news through our fears. Of course, the article isn't about that--it discusses how there are so overwhelmingly many things that can give us cancer that many people don't bother to take any preventive steps.
Well, that first, then: Immediately after ending chemo, I addressed my biggest remaining risk factor by losing 30 pounds. I was hoping to lose 36, and haven't yet, but I've kept off the 30 with really no trouble. As for other changes, I've started taking curcumin, after Judy alerted me to a study that showed it prevented later metastasis in mice. I know that the internet story about microwaving plastic is a hoax, but I still avoid microwaving plastic these days--what the heck. And I do try to buy organic and avoid any of those chemicals that I can--but I still breathe the air in Los Angeles. I hope everyone does these kinds of things. And doesn't smoke. And if any of that doesn't describe you, I hope you'll change.
But back to fear. There really is an ongoing fear that comes with this disease. I am so happy now, being healthy and strong and in better shape physically than I have for years. My brain is back, my body is more than back, my scar is fading, I'm going to Europe for a dream vacation, and basically my life is just incredibly precious and wonderful. I can feel the intense enjoyment of just living (even on a sad or irritable day) so much more readily now. There is a kind of insane joy just in seeing my hair get longer.
And that same awareness can make it very frightening to think that I could go to the doctor in July and be told I have metastatic cancer that can't be cured, and have to go back on chemo and get weak and blurry and bald, and know that forward momentum is for other people's lives and not mine. There is often a fairly active fear that the rug will be pulled from under me.
The kind of cancer I had is most risky for the first 2 years. This is constant knowledge. Each check-up is more portentous than the next, which is great when they are "all clear." Even after the 2 years, the declining slope of the risk graph is still pretty high until 5 years, and then it drops way down. So I will still have some time to worry.
And to wonder how to live. This may seem easy, but here's a puzzle for you. You are me. You still want to have kids, and you don't have a lot of time left for that. But the cancer community advises waiting at least 2 years after treatment before you start to try, in case you do get a recurrence and won't be able to be around for your kids. OK, now I'm 41. Then add in my own personal risk profile, which says that I probably have to worry for 5 years post-treatment, and now I'm 44. What do you do? Do you have a kid? How sure do you have to be that you'll live in order to have them? How sure are you that you will?
Well, that first, then: Immediately after ending chemo, I addressed my biggest remaining risk factor by losing 30 pounds. I was hoping to lose 36, and haven't yet, but I've kept off the 30 with really no trouble. As for other changes, I've started taking curcumin, after Judy alerted me to a study that showed it prevented later metastasis in mice. I know that the internet story about microwaving plastic is a hoax, but I still avoid microwaving plastic these days--what the heck. And I do try to buy organic and avoid any of those chemicals that I can--but I still breathe the air in Los Angeles. I hope everyone does these kinds of things. And doesn't smoke. And if any of that doesn't describe you, I hope you'll change.
But back to fear. There really is an ongoing fear that comes with this disease. I am so happy now, being healthy and strong and in better shape physically than I have for years. My brain is back, my body is more than back, my scar is fading, I'm going to Europe for a dream vacation, and basically my life is just incredibly precious and wonderful. I can feel the intense enjoyment of just living (even on a sad or irritable day) so much more readily now. There is a kind of insane joy just in seeing my hair get longer.
And that same awareness can make it very frightening to think that I could go to the doctor in July and be told I have metastatic cancer that can't be cured, and have to go back on chemo and get weak and blurry and bald, and know that forward momentum is for other people's lives and not mine. There is often a fairly active fear that the rug will be pulled from under me.
The kind of cancer I had is most risky for the first 2 years. This is constant knowledge. Each check-up is more portentous than the next, which is great when they are "all clear." Even after the 2 years, the declining slope of the risk graph is still pretty high until 5 years, and then it drops way down. So I will still have some time to worry.
And to wonder how to live. This may seem easy, but here's a puzzle for you. You are me. You still want to have kids, and you don't have a lot of time left for that. But the cancer community advises waiting at least 2 years after treatment before you start to try, in case you do get a recurrence and won't be able to be around for your kids. OK, now I'm 41. Then add in my own personal risk profile, which says that I probably have to worry for 5 years post-treatment, and now I'm 44. What do you do? Do you have a kid? How sure do you have to be that you'll live in order to have them? How sure are you that you will?
Saturday, April 28, 2007
The Fog
Today's New York Times has a great article about chemo brain--a phenomenon that's apparently being taken more seriously these days.
During our one-week cram session to learn as much about breast cancer treatment as possible, Noah and I repeatedly saw references to chemo brain. The research was inconclusive, but many women report cognitive deficits--sometimes severe--during chemotherapy. The best study we read about, from the June 2004 issue of the journal Cancer (and mentioned here, about 3/5 of the way down the page), noted that many women reporting cognitive impairments had them before chemotherapy started, so it was unclear whether the cause was the toxins or just the preoccupation and anxiety that come with cancer. The newer research, linked above, is more grave: it appears that brain cells are killed by the chemo, and that the effects can last a very long time.
Of course, for me, this was perhaps the most frightening potential side effect. My identity is pretty tightly structured around intellect--which provides my livelihood, too--and the thought of losing mental acuity... You can imagine.
Like most people's, my oncologist was sympathetic but not especially helpful. "It could happen," was all she could really say, and she pointed us to that 2004 study, which offered hope in its suggestion that it might be emotions, not neurons, causing trouble for many people.
I did have chemo brain. You can ask Noah, who tried to be forbearing but occasionally had to point out that I was impaired. I lost words constantly. I was a bit ditzy and scrambled (good thing I had a platinum blond wig for those moments, so I could really be a stereotype). It was not as horrifying as I'd feared--more like mild aging, maybe, than a brain injury--but it was real, and annoying, and not the way I want to live.
And I'm really happy to report that it went away, very quickly after the end of treatment. I don't think I have any lasting cognitive effects at this point. I've been able to go back to work and put sentences together, both in papers and in front of MBA classes. That has been one of my many reliefs in life A.D.
During our one-week cram session to learn as much about breast cancer treatment as possible, Noah and I repeatedly saw references to chemo brain. The research was inconclusive, but many women report cognitive deficits--sometimes severe--during chemotherapy. The best study we read about, from the June 2004 issue of the journal Cancer (and mentioned here, about 3/5 of the way down the page), noted that many women reporting cognitive impairments had them before chemotherapy started, so it was unclear whether the cause was the toxins or just the preoccupation and anxiety that come with cancer. The newer research, linked above, is more grave: it appears that brain cells are killed by the chemo, and that the effects can last a very long time.
Of course, for me, this was perhaps the most frightening potential side effect. My identity is pretty tightly structured around intellect--which provides my livelihood, too--and the thought of losing mental acuity... You can imagine.
Like most people's, my oncologist was sympathetic but not especially helpful. "It could happen," was all she could really say, and she pointed us to that 2004 study, which offered hope in its suggestion that it might be emotions, not neurons, causing trouble for many people.
I did have chemo brain. You can ask Noah, who tried to be forbearing but occasionally had to point out that I was impaired. I lost words constantly. I was a bit ditzy and scrambled (good thing I had a platinum blond wig for those moments, so I could really be a stereotype). It was not as horrifying as I'd feared--more like mild aging, maybe, than a brain injury--but it was real, and annoying, and not the way I want to live.
And I'm really happy to report that it went away, very quickly after the end of treatment. I don't think I have any lasting cognitive effects at this point. I've been able to go back to work and put sentences together, both in papers and in front of MBA classes. That has been one of my many reliefs in life A.D.
Thursday, April 12, 2007
New direction
Hi folks!
I'm happy to say that breast cancer has increasingly become a background (rather than foreground) presence in my life. The rhythm of my days is no longer dictated by treatments and weakness. Sometimes, perhaps, I even leave it too far behind, caught up as I am in the headlong pursuit of tenure and the juggling of daily demands.
In any case, I find myself with less to say regularly about the cancer journey--and I'm glad of that, and hope it stays that way! But that doesn't mean I need to throw over the blog. I think I'll morph it into another common blog form: the compendium. I'm constantly struck by the constant barrage of news coverage related to breast cancer. I figure I'll post links here, and--when something is particularly interesting--even comments.
And never fear, those who prefer the logorrheaic blog, I'll still post when noteworthy things arise!
So, to begin:
Bad News
So far, John Edwards is my favorite presidential candidate for '08. And although I didn't love getting added to a fundraising list when I wrote a note of support, I've been pleased and impressed by how he and his wife Elizabeth have handled her recurrence of cancer. It was terrifying to hear about her. Many articles refer to her "particularly deadly" form of cancer, the "triple-negative" (estrogen-negative, progesterone-negative, her-2 neu negative). Well, I'm a triple-negative too, with the highest (worst) possible Bloom-Richardson score. News like this makes me seek refuge in the numbers, and hope I land on their good side: 80% chance I'm free, 20% chance I'm not.
Cute News
The LA Times yesterday carried an odd but somewhat heartwarming story about the recovery of 2000 wedding dresses, intended for a breast cancer fundraiser, then stolen, then found at the Mexican border.
Important News
Not that it's clear at all, but the news/debates on best diagnostic practices is worth attention: good summaries at salon.com.
I'm happy to say that breast cancer has increasingly become a background (rather than foreground) presence in my life. The rhythm of my days is no longer dictated by treatments and weakness. Sometimes, perhaps, I even leave it too far behind, caught up as I am in the headlong pursuit of tenure and the juggling of daily demands.
In any case, I find myself with less to say regularly about the cancer journey--and I'm glad of that, and hope it stays that way! But that doesn't mean I need to throw over the blog. I think I'll morph it into another common blog form: the compendium. I'm constantly struck by the constant barrage of news coverage related to breast cancer. I figure I'll post links here, and--when something is particularly interesting--even comments.
And never fear, those who prefer the logorrheaic blog, I'll still post when noteworthy things arise!
So, to begin:
Bad News
So far, John Edwards is my favorite presidential candidate for '08. And although I didn't love getting added to a fundraising list when I wrote a note of support, I've been pleased and impressed by how he and his wife Elizabeth have handled her recurrence of cancer. It was terrifying to hear about her. Many articles refer to her "particularly deadly" form of cancer, the "triple-negative" (estrogen-negative, progesterone-negative, her-2 neu negative). Well, I'm a triple-negative too, with the highest (worst) possible Bloom-Richardson score. News like this makes me seek refuge in the numbers, and hope I land on their good side: 80% chance I'm free, 20% chance I'm not.
Cute News
The LA Times yesterday carried an odd but somewhat heartwarming story about the recovery of 2000 wedding dresses, intended for a breast cancer fundraiser, then stolen, then found at the Mexican border.
Important News
Not that it's clear at all, but the news/debates on best diagnostic practices is worth attention: good summaries at salon.com.
Tuesday, March 20, 2007
Girl, resumed
So how did I spend my first anniversary of a cancer diagnosis? In China.
It was a work trip--I accompanied 76 MBA students (with several faculty & staff colleagues, too) to Shanghai, where we spent 5 days meeting with companies from Starbucks to APL shipping and 2 days seeing the sights. Shanghai is like a few New Yorks piled on top of each other: busy, bustling; horrible traffic (less volume than LA, but much more insane); and, from what I hear, more construction cranes than in the rest of the world, combined.
It's a shopper's paradise where you can get North Face jackets for about $18 each, and knock-off Birkin bags for about $40. A one-hour foot massage that was the best of my life was about $3.50. About halfway through, I began feeling really, really guilty about the guys who were sitting there giving the massages. When I pay $3.50, you know he is getting at most half of that (and probably less) for his hour's great work. And Starbucks--which is all over Shanghai--still charges $4 for a latte. China is getting rich on the backs of its poor. The gifts I bought for people are pretty much all handmade, because labor is still cheaper there than machinery. I could hardly stop purchasing, but there's definitely a guilt factor involved. And for all the great service we got everywhere, there's not even a custom of tipping!
Shanghai is not traditional China; we made a brief visit to SuZhou, nearby, and that was much more quaint and old-fashioned. Still, Shanghai has great energy and a breathless feeling of hastening progress. It was exotic and invigorating, and everyone we met was looking forward with a lot of hope. As a place to mark my first year AD, it was perfect.
It was a work trip--I accompanied 76 MBA students (with several faculty & staff colleagues, too) to Shanghai, where we spent 5 days meeting with companies from Starbucks to APL shipping and 2 days seeing the sights. Shanghai is like a few New Yorks piled on top of each other: busy, bustling; horrible traffic (less volume than LA, but much more insane); and, from what I hear, more construction cranes than in the rest of the world, combined.
It's a shopper's paradise where you can get North Face jackets for about $18 each, and knock-off Birkin bags for about $40. A one-hour foot massage that was the best of my life was about $3.50. About halfway through, I began feeling really, really guilty about the guys who were sitting there giving the massages. When I pay $3.50, you know he is getting at most half of that (and probably less) for his hour's great work. And Starbucks--which is all over Shanghai--still charges $4 for a latte. China is getting rich on the backs of its poor. The gifts I bought for people are pretty much all handmade, because labor is still cheaper there than machinery. I could hardly stop purchasing, but there's definitely a guilt factor involved. And for all the great service we got everywhere, there's not even a custom of tipping!
Shanghai is not traditional China; we made a brief visit to SuZhou, nearby, and that was much more quaint and old-fashioned. Still, Shanghai has great energy and a breathless feeling of hastening progress. It was exotic and invigorating, and everyone we met was looking forward with a lot of hope. As a place to mark my first year AD, it was perfect.
Tuesday, March 13, 2007
Girl, interrupted
February 26, a year ago.
I'm in the shower, shaving an underarm, and my fingers slip in the soap, down just a couple of inches. It feels like I have a knot, like a raised bruise, only it doesn't hurt. I check the other side--no knot. I say aloud: "Shit." Just doesn't seem normal.
Out of the shower, I put lotion on Noah's fingertips, place his left fingers over the knot, his right on the knotless other side. He feels it immediately, nods--but sure, of course, that it's nothing.
February 27, a year ago.
I call the faculty clinic. My voice rises, a little shrill, when it looks like I can't get a same-day appointment. But it works out.
Fibroadenoma. That's what Dr. Sapkin says, after finishing the exam. "I'll refer you for a mammogram to be sure. Don't worry if they also do a biopsy--they are abundantly cautious at the breast center."
A year ago today.
In previous days, I've had my first mammogram ever. The knot showed up as suspicious, so I've also had an ultrasound and biopsy. Also suspicious, but then I had to wait several long days for the lab results. Now I'm back at the Norris Cancer Center, Noah with me for the first time in the series of appointments (since we've been sure, 'til now, that it was really nothing). We're still waiting to hear "fibroadenoma" confirmed, and we've planned a celebratory lunch afterward.
When the nurse comes in, she's surprised to learn that we are there for the results. I'm asked repeatedly for my family's cancer history. We're shown to an exam room, I'm put in a gown. We wait.
Dr. Silverstein, the surgeon, surges into the room, all breezy confidence. He examines me, leaves the gown down like I might not even notice, draws a boob on the whiteboard. (We quickly realize that he spends his days drawing boobs. Every exam room has some of his boobs on the board.) He leaves to check the labs, and no one has said anything to reassure us, and we look at each other, and I am finally scared.
Then he comes back, still breezy, and announces it just like that. "The bad news is, that thing is cancer." He points with his pen, like a sword. "The good news is, we're gonna cure you." Noah and I lock eyes across the room, jaws hanging, faces pallid.
Talking follows, lots of it, the 40-minute crash course in breast cancer, the first dozen decisions made in fog and haste. We meet my oncologist, talk about surgery in 2 days. After an hour in the maelstrom, the medical staff all leave, and we're alone in the exam room, with pictures of boobs--front, side, whole circles, circles with pie-shaped wedges removed, circles with a dark blotch of tumor on the right-hand side--looking back at us.
I say to Noah, "My life is gonna suck."
We go to the lunch anyway, and I taste nothing.
I'm in the shower, shaving an underarm, and my fingers slip in the soap, down just a couple of inches. It feels like I have a knot, like a raised bruise, only it doesn't hurt. I check the other side--no knot. I say aloud: "Shit." Just doesn't seem normal.
Out of the shower, I put lotion on Noah's fingertips, place his left fingers over the knot, his right on the knotless other side. He feels it immediately, nods--but sure, of course, that it's nothing.
February 27, a year ago.
I call the faculty clinic. My voice rises, a little shrill, when it looks like I can't get a same-day appointment. But it works out.
Fibroadenoma. That's what Dr. Sapkin says, after finishing the exam. "I'll refer you for a mammogram to be sure. Don't worry if they also do a biopsy--they are abundantly cautious at the breast center."
A year ago today.
In previous days, I've had my first mammogram ever. The knot showed up as suspicious, so I've also had an ultrasound and biopsy. Also suspicious, but then I had to wait several long days for the lab results. Now I'm back at the Norris Cancer Center, Noah with me for the first time in the series of appointments (since we've been sure, 'til now, that it was really nothing). We're still waiting to hear "fibroadenoma" confirmed, and we've planned a celebratory lunch afterward.
When the nurse comes in, she's surprised to learn that we are there for the results. I'm asked repeatedly for my family's cancer history. We're shown to an exam room, I'm put in a gown. We wait.
Dr. Silverstein, the surgeon, surges into the room, all breezy confidence. He examines me, leaves the gown down like I might not even notice, draws a boob on the whiteboard. (We quickly realize that he spends his days drawing boobs. Every exam room has some of his boobs on the board.) He leaves to check the labs, and no one has said anything to reassure us, and we look at each other, and I am finally scared.
Then he comes back, still breezy, and announces it just like that. "The bad news is, that thing is cancer." He points with his pen, like a sword. "The good news is, we're gonna cure you." Noah and I lock eyes across the room, jaws hanging, faces pallid.
Talking follows, lots of it, the 40-minute crash course in breast cancer, the first dozen decisions made in fog and haste. We meet my oncologist, talk about surgery in 2 days. After an hour in the maelstrom, the medical staff all leave, and we're alone in the exam room, with pictures of boobs--front, side, whole circles, circles with pie-shaped wedges removed, circles with a dark blotch of tumor on the right-hand side--looking back at us.
I say to Noah, "My life is gonna suck."
We go to the lunch anyway, and I taste nothing.
Wednesday, January 31, 2007
Quick note
Yes, folks, I'm still here. I've been getting back to my life in a big way--which means work, work, work, writing, writing, writing. (Papers, not blog entries.) Sorry for the silence. The biggest reason is that I have to write an update on The Scare last month, and I just haven't been ready to do it. Soon, though.
Meanwhile--yesterday I had my second 3-month check (yay! I've been out of chemo for 6 months now!) and all was clear. Very good news, of course! I've lost another couple of pounds and am back to most of my physical activity and am really feeling great.
Of course, then, today all over the news is the sad notice that Molly Ivins has died of breast cancer. Dammit, that sucks. First of all, she was amazing and one of my heroes, even though I've apparently been pronouncing her name wrong all these years. Second, breast cancer. Gah. Just when I can start to think of it as innocuous again for a few minutes, it whacks someone fantastic way before her time. Stupid disease.
Anyway, I *am* here, and I'll write a real update (hair pics, too!) very soon. Really!
Meanwhile--yesterday I had my second 3-month check (yay! I've been out of chemo for 6 months now!) and all was clear. Very good news, of course! I've lost another couple of pounds and am back to most of my physical activity and am really feeling great.
Of course, then, today all over the news is the sad notice that Molly Ivins has died of breast cancer. Dammit, that sucks. First of all, she was amazing and one of my heroes, even though I've apparently been pronouncing her name wrong all these years. Second, breast cancer. Gah. Just when I can start to think of it as innocuous again for a few minutes, it whacks someone fantastic way before her time. Stupid disease.
Anyway, I *am* here, and I'll write a real update (hair pics, too!) very soon. Really!
Tuesday, December 05, 2006
There and back again
Here's what I did on Sunday: I played a game of volleyball on the beach.
Doesn't seem like much, but I haven't played a game of volleyball since March. The twelfth, to be exact. The day before I had surgery.
Damn, it felt good. And I didn't even suck (much). My surgery arm--the one for which I have to be vigilant against lymphedema--got pink, but didn't swell. I stopped after one game, but next week I'll play two.
***
Even after going through it myself, it is really hard to fathom just how much chemo takes out of you. I remember struggling to walk up the stairs in our house: gripping the handrail, lifting each foot heavily onto a step and pausing to rest before continuing, feeling my legs quake as I asked them to work that hard. One day, Noah--seeing how bored and sad I was, and wanting to help--played cheerleader and tried hard to convince me to go see a movie. It sounded like the most exhausting idea ever; I couldn't imagine having to sit upright in the chair for that long, let alone make the trip to the theater. The other night, we went to see a movie and it was so feather-light; the farthest thing from exertion.
I look back and shake my head. It seems impossible that a movie was too exhausting even to try. And it happened to me. If anyone out there knows anyone going through chemo, please remember: the experience is really unimaginable. Some days there won't even be a movie. But if all goes well, in the future, there may be a volleyball game.
Doesn't seem like much, but I haven't played a game of volleyball since March. The twelfth, to be exact. The day before I had surgery.
Damn, it felt good. And I didn't even suck (much). My surgery arm--the one for which I have to be vigilant against lymphedema--got pink, but didn't swell. I stopped after one game, but next week I'll play two.
***
Even after going through it myself, it is really hard to fathom just how much chemo takes out of you. I remember struggling to walk up the stairs in our house: gripping the handrail, lifting each foot heavily onto a step and pausing to rest before continuing, feeling my legs quake as I asked them to work that hard. One day, Noah--seeing how bored and sad I was, and wanting to help--played cheerleader and tried hard to convince me to go see a movie. It sounded like the most exhausting idea ever; I couldn't imagine having to sit upright in the chair for that long, let alone make the trip to the theater. The other night, we went to see a movie and it was so feather-light; the farthest thing from exertion.
I look back and shake my head. It seems impossible that a movie was too exhausting even to try. And it happened to me. If anyone out there knows anyone going through chemo, please remember: the experience is really unimaginable. Some days there won't even be a movie. But if all goes well, in the future, there may be a volleyball game.
Thursday, November 23, 2006
Giving thanks
I’ve always thought about reasons to be thankful at Thanksgiving, but this year my feelings are amplified.
I’m thankful that I’m done with the 7 months’ journey that I took this year. I’m thankful that I feel better, healthier, stronger. I’m thankful that my 3-month check is negative, and that I hear new stories every week about some woman who had breast cancer once, and never had it again. I’m thankful that my hair is returning.
I’m thankful for great doctors and incredible nurses and insurance that lets me get whatever they say I need.
I’m thankful for all the friends who were better friends than I knew, who called and came over and sent e-mails and made sure I was hearing them even when I wasn’t reaching out to them—especially Maia, Christina, Alexandra. I’m grateful for an extended family, part of which I only gained 6 years ago, who offered everything from moral support to medical advice (Andrew) to some of the best cancer quips (“fucking bad news!” –Steffi) I’ve heard.
I’m thankful for books on tape from Bernadette and Lara, for Harry Potter movies from Alison, the Gilmore Girls from my mom, books from Judy. I’m thankful for flowers from my mom and dad, Chris J. and Melody, Chris D, Rick and Joanie. I'm thankful for scarves and good body-smelly things from Sarah. I'm thankful for Lissa's care package, with comic books and candied ginger and great CDs. I’m thankful for the juicer that Maia, Alison, Lara, and Ena all sent to keep me healthy and hydrated during chemo, and the book of juice recipes that were as yummy as could be. I'm thankful for the DVD player from Mom, Dad, and Dan that kept my mind off the needles every two weeks. I'm thankful for Rick and Joanie's four-leafed clover, and the acupressure wristband that staved off nausea even on the worst days.
I’m thankful for the cards, e-mails, and notes from so many people that I won’t even try to list them now, because I’m worried I’ll leave someone out, and everyone is so important to me. But later, I’ll go get all those cards (I’ve saved them all!) and come back and edit this post to include every name.
I’m thankful for the comments on my blog, which let me know that people were keeping track of me and interested in how I was doing.
I’m thankful for my parents, who cried on the phone when I told them my news, and then stiffened up just as strong as they could and insisted on being there for my surgery, washing my hair afterward, doing whatever little errands and help they could find. They answered the call when I was in the darkest weeks of chemo, each coming out for a full week to keep me company and bring me cheer and do more errands. They sat on the loveseat while I lay on the couch, ensconsced in pillows and misery, and talked or read or just were present. They sent flowers every single week. They kept track of every date. They hugged me and their arms told how much they loved me and wanted me to heal.
And I’m thankful for Noah, who had his own 7-month cancer journey by my side, and who travelled it carrying my burdens along with his own. I’m thankful for how he tried to give me ease in every way: going to every medical appointment, bringing me popsicles and drinks during my chemo drips, shaving my head for me when the last bit of hair had to go, holding me when I was desolate, playing Battleship when I was bored, making countless trips to the grocery store for the one palatable thing, making that call to my parents when I was really down, urging me to exercise, to get out in the world, to live life throughout treatment. He bit his tongue when he wanted to argue, bowed his head when I was short-tempered, and never looked at me differently when my hair was gone and my chest was a little lopsided. He celebrated the end of chemo, then the end of treatment, with as much ferocious joy as I did. I know that a lot of women face double the stress when they deal with cancer, because they have to fight not only a medical battle, but a whole bunch of personal ones, too. Noah was the strongest of a whole phalanx of people who encircled me in a web of linked arms, making sure that, while I might be jostled around a bit, I would never fall.
I can certainly feel sorry for myself, I can ask “why me,” I can resent the hell out of this experience. But it has also shown me how much I have to be grateful for, and this Thanksgiving, it’s so much that I can hardly contain the gratitude. So thank you all, and I wish you as much joy this year as health, as friends and loved ones, as the beauty of life, can bring.
I keep remembering kindnesses not mentioned here, and coming back to add them--so if I have unforgivably not mentioned one of yours, please check back! I'm editing a lot!
Monday, November 20, 2006
A thump in the chest
It hits at the oddest, most unexpected times. Steffi told us that cancer cleaves your life in two. There's no longer one long, smooth, unbroken track; instead, you have BC (before cancer) and AD (after diagnosis). And once you fall, sprawling, over the rut into AD, you can never go back again.
So I'm reading a great little piece in Salon about giving thanks at Thanksgiving, and the clarity and wonder that come from living past cancer. A very nice piece, and I completely agree. Then I look at the letters, and one woman writes that she is grateful for never having had cancer.
Which is when I get the thump. Because, unlike the letter writer, I have had it. I know lots of people who haven't--far more who haven't than who have. And I used to be able to have that same relieved, satisfied little feeling of being one of the ones on the good side. Now I have to check that box on all the doctors' forms, and I have to claim that history (in both medical and symbolic senses). Boo hoo, me.
Yes, before you rush to reassure me, this glumness is accompanied by the recognition that I still have the thing to be grateful for. And maybe it's even more profound. To walk with death, and come out still alive; where would all our heroic tales be without that? The Salon article itself talks about how life AD is a little sweeter, a little clearer, for the darkness that we pass through to arrive back at life. I get it, and more than intellectually. I do feel deeply, profoundly grateful, and the world is definitely bright. I love feeling better every day. I love being back to my life. I love how much I appreciate it, and how I can dismiss the little annoyances, because of the past 8 months.
But still the sense of loss. Cancer is the gift that keeps on taking.
So I'm reading a great little piece in Salon about giving thanks at Thanksgiving, and the clarity and wonder that come from living past cancer. A very nice piece, and I completely agree. Then I look at the letters, and one woman writes that she is grateful for never having had cancer.
Which is when I get the thump. Because, unlike the letter writer, I have had it. I know lots of people who haven't--far more who haven't than who have. And I used to be able to have that same relieved, satisfied little feeling of being one of the ones on the good side. Now I have to check that box on all the doctors' forms, and I have to claim that history (in both medical and symbolic senses). Boo hoo, me.
Yes, before you rush to reassure me, this glumness is accompanied by the recognition that I still have the thing to be grateful for. And maybe it's even more profound. To walk with death, and come out still alive; where would all our heroic tales be without that? The Salon article itself talks about how life AD is a little sweeter, a little clearer, for the darkness that we pass through to arrive back at life. I get it, and more than intellectually. I do feel deeply, profoundly grateful, and the world is definitely bright. I love feeling better every day. I love being back to my life. I love how much I appreciate it, and how I can dismiss the little annoyances, because of the past 8 months.
But still the sense of loss. Cancer is the gift that keeps on taking.
Saturday, November 11, 2006
Lucky
For much of my life, I've been relatively glad that I haven't won (or played) the lottery. That's right. It always seemed to me that I had pretty darned good luck, but in a mild way; and I worried that any exceptional good luck (like a multimillion jackpot) would have to be offset by a commensurately horrible experience.
As you can imagine, since March 13, I've been thinking that now is a fine time to start playing the lottery.
My diagnosis was a piece of really crappy luck. And everything that has happened as a consequence is stuff that I would happily forego, if only I didn't have to have this diagnosis. And yet, it turns out that the luck baseline changes once the diagnosis is here. Although it's always sounded ludicrous to me that flood victims, for example, praise God for getting them through the flood alive (I think, shouldn't you be pissed at God for sending you a flood??), now I understand. A horror strikes, and you don't get to use your old frame anymore.
So then, I think, I've been very lucky. I was lucky that the tumor was only half the size that the doctors thought before surgery. I was lucky that there was no spread into my lymph nodes, and no metastasis. I was lucky that my veins held up to the chemo, and I never had to get a port or a pic line. I was lucky that my skin had no problems with the radiation. I was lucky with timing: we delayed the start of chemo until I finished teaching in spring, and I started teaching in fall two weeks after the end of chemo. So I lost a summer--but I've otherwise been able to stick to the normal seasonal schedule of my life. And I was lucky that it was summer when I had to sit nauseated on the couch, since I was not expected to be anywhere by my job, and could continue getting paid without having to take formal leave--working when I could manage to. Think of the incredible luck, and luxury, of that.
And I've been phenomenally lucky--in the sense of "the harder I work, the luckier I get"--because I am well insured and had planned well. Two years ago, we switched insurance plans into the most powerful and flexible PPO that USC offers. This year, I'd put extra money into our medical spending account (thinking we'd get lots of eyeglasses and physical therapy). Also, though I didn't end up needing it, I signed up for the supplemental disability plan. All of this means that I have had virtually no financial concerns through this whole process. My out of pocket maximum for the year is just $1000, and much of that was covered by the spending account, so we've probably written less that $200 in checks so far. If I needed to go on disability, I would get something close to 6 weeks at full salary, and after that would get over 50% of my salary.
I contrast this with the experience of my aunt, who has had to go through treatment for cancer without private insurance, and who has had to forego certain treatments or certain drugs--or be told that she can't be treated with a new protocol until she gets substantially worse, because that protocol is so expensive that it can be provided for her only if her need is dire. She owes tens, if not hundreds, of thousands of dollars to her oncology hospital, and the only asset she can maintain as a result is her home.
Cancer treatment is brutal and unhappy anyway (even if I sounded chipper). When I hear other people's horror stories about insurance denials, high bills, and struggling to work throughout chemo, I feel astonished and relieved that things have been so "easy" for me. Lucky, lucky.
Oh, and last week I had my first three-month check--blood tests and physical exam. I got the all clear until late January. I'm in Philadelphia at a conference, feeling energetic and healthy and fully involved in my life again. Lucky, lucky.
As you can imagine, since March 13, I've been thinking that now is a fine time to start playing the lottery.
My diagnosis was a piece of really crappy luck. And everything that has happened as a consequence is stuff that I would happily forego, if only I didn't have to have this diagnosis. And yet, it turns out that the luck baseline changes once the diagnosis is here. Although it's always sounded ludicrous to me that flood victims, for example, praise God for getting them through the flood alive (I think, shouldn't you be pissed at God for sending you a flood??), now I understand. A horror strikes, and you don't get to use your old frame anymore.
So then, I think, I've been very lucky. I was lucky that the tumor was only half the size that the doctors thought before surgery. I was lucky that there was no spread into my lymph nodes, and no metastasis. I was lucky that my veins held up to the chemo, and I never had to get a port or a pic line. I was lucky that my skin had no problems with the radiation. I was lucky with timing: we delayed the start of chemo until I finished teaching in spring, and I started teaching in fall two weeks after the end of chemo. So I lost a summer--but I've otherwise been able to stick to the normal seasonal schedule of my life. And I was lucky that it was summer when I had to sit nauseated on the couch, since I was not expected to be anywhere by my job, and could continue getting paid without having to take formal leave--working when I could manage to. Think of the incredible luck, and luxury, of that.
And I've been phenomenally lucky--in the sense of "the harder I work, the luckier I get"--because I am well insured and had planned well. Two years ago, we switched insurance plans into the most powerful and flexible PPO that USC offers. This year, I'd put extra money into our medical spending account (thinking we'd get lots of eyeglasses and physical therapy). Also, though I didn't end up needing it, I signed up for the supplemental disability plan. All of this means that I have had virtually no financial concerns through this whole process. My out of pocket maximum for the year is just $1000, and much of that was covered by the spending account, so we've probably written less that $200 in checks so far. If I needed to go on disability, I would get something close to 6 weeks at full salary, and after that would get over 50% of my salary.
I contrast this with the experience of my aunt, who has had to go through treatment for cancer without private insurance, and who has had to forego certain treatments or certain drugs--or be told that she can't be treated with a new protocol until she gets substantially worse, because that protocol is so expensive that it can be provided for her only if her need is dire. She owes tens, if not hundreds, of thousands of dollars to her oncology hospital, and the only asset she can maintain as a result is her home.
Cancer treatment is brutal and unhappy anyway (even if I sounded chipper). When I hear other people's horror stories about insurance denials, high bills, and struggling to work throughout chemo, I feel astonished and relieved that things have been so "easy" for me. Lucky, lucky.
Oh, and last week I had my first three-month check--blood tests and physical exam. I got the all clear until late January. I'm in Philadelphia at a conference, feeling energetic and healthy and fully involved in my life again. Lucky, lucky.
Monday, October 16, 2006
Signs
Haven't posted since the end of treatment and thought I should check in briefly. I'm doing well; haven't been sick again (knock wood) and my energy is coming back steadily. Another hair update soon, I think. I've been out in public a couple of times with my GI Jane look, though I still don't really feel the head's ready for viewing.
A couple of nights ago, I was at Whole Foods and, as I got back to the car, saw a woman in the parking lot with a bandanna covering hair like mine. I was wearing a wig, but wanted to whip it off and call out, "Hey, look! Me too!"
Having cancer has made me a lot more aware of the many difficulties and tragedies that people all around us face. (Also, when Noah and I watched a 9/11 documentary, we saw a guy who was in one of the stairwells when a tower came down, and he rode that stairwell down in the collapse--something like 60 stories--and survived. I thought about him walking around in the world, mingling with thousands of strangers who have no idea what he's been through--no idea that he survived the collapse of the twin towers.) It's impossible to see what people have survived, what they are currently enduring. I wish we all wore big signs: "In treatment for breast cancer"; "Parents died in a plane crash"; "Currently nursing my husband through terminal illness"; etc. Yes, it may be macabre, but it just seems like almost everyone has faced tragedy, and deserves tenderness, and yet we are all so oblivious to everyone else's pain because we just can't see it.
A couple of nights ago, I was at Whole Foods and, as I got back to the car, saw a woman in the parking lot with a bandanna covering hair like mine. I was wearing a wig, but wanted to whip it off and call out, "Hey, look! Me too!"
Having cancer has made me a lot more aware of the many difficulties and tragedies that people all around us face. (Also, when Noah and I watched a 9/11 documentary, we saw a guy who was in one of the stairwells when a tower came down, and he rode that stairwell down in the collapse--something like 60 stories--and survived. I thought about him walking around in the world, mingling with thousands of strangers who have no idea what he's been through--no idea that he survived the collapse of the twin towers.) It's impossible to see what people have survived, what they are currently enduring. I wish we all wore big signs: "In treatment for breast cancer"; "Parents died in a plane crash"; "Currently nursing my husband through terminal illness"; etc. Yes, it may be macabre, but it just seems like almost everyone has faced tragedy, and deserves tenderness, and yet we are all so oblivious to everyone else's pain because we just can't see it.
Friday, October 06, 2006
Light candles and hope this is for good!
Here's what Noah presented to me at 11:01 am, after I rang the ceremonial "done with treatment" bell at radiation oncology.
Thursday, October 05, 2006
T-minus-27 hours
One more radiation treatment left.
We had a hiccup on Tuesday, when I arrived for my appointment and was told that the machine was down. It couldn't be fixed in time for me to make it to class, so I had to skip treatment that day. I really wanted to finish on Friday--can you imagine having to wait the weekend, knowing that your last would be on a Monday? So the dr agreed that I could have two treatments in one day. Today, I got up early and got to radiation for an 8:30 appointment, then went to Beverly Hills to meet the nutritional oncologist at 12:30, and then back down to Torrance for radiation again at 4:10. (I had time to stop home twice, between appointments.)
The rad onc tells me that this week should be the time for my worst skin reaction to the original radiation field, and next week will be the worst in the areas covered by the boost. I do have some redness, and the top of the field looks like I got an odd, rectangular sunburn. The skin's a little toasty--leathery--the way sunburned skin can be, but still not too bad, and if it starts getting better from here, I should be fine.
The meeting with the nutritionist went great. She said I'm doing really well (18 lbs down, reflecting a slowdown this week--but she says this is a really fast rate compared to most of her other patients). My goal has been adjusted a bit--I have another 18 lbs to go, and she may still push me further after that. I don't go back for another 8 weeks. Since it took me 8 weeks to lose the first 18 lbs, I hope to lose the next 18 lbs in the next 8 weeks. It'll take some work!
After my last treatment tomorrow, Noah and I are having a celebration day. We'll go to brunch at the North End Caffe in Manhattan Beach, one of my favorite places--a place I've not patronized since my diet started. I'll be cheating on the diet tomorrow, for sure. Then we'll go for a hike in the Santa Monica Mountains, then back down to the South Bay for dinner, and then (of course) the Battlestar Galactica premiere. I'm looking forward to a day of self-indulgence; the next day, I'll be back to my refraining ways!
It is really kind of amazing how much support there is out in the world these days for cancer patients. First, there's the Wellness Community, where I've attended support groups since my diagnosis. They also offer all kinds of classes in yoga, visualization, nutrition, and other mind-body boosts, and all of it is free to cancer patients and their families. Now that I'm almost through treatment, I've been interested in getting back to physical condition, and it turns out there are more great (and free) programs for that, too. Spectrum health clubs offers a "Cancer WellFit" program that gives a 10-week class to help us get back into shape. I start mine on October 16. There's also an organization called Team Survivor that provides group exercise classes--even triathlon training!--to recovering patients. And yes, it's free.
Finally, it is Breast Cancer Awareness Month. I'm certainly aware of breast cancer, and I assume anyone reading here is, too. Of course I want all the women I know to do the self exams and the mammograms and yada yada yada. But also watch your weight (huge risk factor!) and enjoy your life every day (not a risk factor, but something we can fail to do until a calamity knocks us on our ass). I hope everyone can keep their awareness firmly anchored in the 3rd-person perspective.
We had a hiccup on Tuesday, when I arrived for my appointment and was told that the machine was down. It couldn't be fixed in time for me to make it to class, so I had to skip treatment that day. I really wanted to finish on Friday--can you imagine having to wait the weekend, knowing that your last would be on a Monday? So the dr agreed that I could have two treatments in one day. Today, I got up early and got to radiation for an 8:30 appointment, then went to Beverly Hills to meet the nutritional oncologist at 12:30, and then back down to Torrance for radiation again at 4:10. (I had time to stop home twice, between appointments.)
The rad onc tells me that this week should be the time for my worst skin reaction to the original radiation field, and next week will be the worst in the areas covered by the boost. I do have some redness, and the top of the field looks like I got an odd, rectangular sunburn. The skin's a little toasty--leathery--the way sunburned skin can be, but still not too bad, and if it starts getting better from here, I should be fine.
The meeting with the nutritionist went great. She said I'm doing really well (18 lbs down, reflecting a slowdown this week--but she says this is a really fast rate compared to most of her other patients). My goal has been adjusted a bit--I have another 18 lbs to go, and she may still push me further after that. I don't go back for another 8 weeks. Since it took me 8 weeks to lose the first 18 lbs, I hope to lose the next 18 lbs in the next 8 weeks. It'll take some work!
After my last treatment tomorrow, Noah and I are having a celebration day. We'll go to brunch at the North End Caffe in Manhattan Beach, one of my favorite places--a place I've not patronized since my diet started. I'll be cheating on the diet tomorrow, for sure. Then we'll go for a hike in the Santa Monica Mountains, then back down to the South Bay for dinner, and then (of course) the Battlestar Galactica premiere. I'm looking forward to a day of self-indulgence; the next day, I'll be back to my refraining ways!
It is really kind of amazing how much support there is out in the world these days for cancer patients. First, there's the Wellness Community, where I've attended support groups since my diagnosis. They also offer all kinds of classes in yoga, visualization, nutrition, and other mind-body boosts, and all of it is free to cancer patients and their families. Now that I'm almost through treatment, I've been interested in getting back to physical condition, and it turns out there are more great (and free) programs for that, too. Spectrum health clubs offers a "Cancer WellFit" program that gives a 10-week class to help us get back into shape. I start mine on October 16. There's also an organization called Team Survivor that provides group exercise classes--even triathlon training!--to recovering patients. And yes, it's free.
Finally, it is Breast Cancer Awareness Month. I'm certainly aware of breast cancer, and I assume anyone reading here is, too. Of course I want all the women I know to do the self exams and the mammograms and yada yada yada. But also watch your weight (huge risk factor!) and enjoy your life every day (not a risk factor, but something we can fail to do until a calamity knocks us on our ass). I hope everyone can keep their awareness firmly anchored in the 3rd-person perspective.
Monday, October 02, 2006
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