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.

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.

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!

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.

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!

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.

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.

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.

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.

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.

Photo Monday! -- Diet update

How's the diet going? See for yourself.














Photo credits, as always: Noah

Photo Monday! -- Hair Watch 2006

As promised. My hair is growing WAAAAAAAY more slowly than I hoped or expected. Tomorrow makes 9 weeks since the end of chemo (yay), and as of today I still look bald, albeit with 5 o'clock shadow. It's progress, but not arrival. My new goal is to be able to go "topless" by November. Please send all your hairy thoughts my way.

Here's the head today: And the last time:

And just to acknowledge growth where it exists...here's a closeup shot of my eye, where you can see that eyebrow and lashes are actually looking like the real things. By the end of treatment, I had about three single lashes left on the upper lid of each eye, and none on the lower; and I've been down to maybe ten eyebrow hairs, total. Now I can even go easy on the eye pencil, so this really is progress:

End in sight

I'm down to my last week of treatment. The last week of this 6-plus month journey is here. I've finished the main radiation treatment, and next Monday through Friday I'll have the "boost"--a beam more narrowly focused along my lumpectomy scar. I've developed some redness, though it's very mild, and fortunately next week's treatments will avoid the red areas. Hopefully I'll get out of this round of treatment with minimal scathing.

And as of Friday, October 6 at 11am--I will officially be Done With Treatment. I can move my magnet from the "cancer patient" column to "cancer survivor." I can hardly tell you how exciting that is. Noah and I will be taking the day to celebrate--meals with disregard to diet, blatant ignoring of work, and whatever fun activity we can muster.

And at 9pm--yes, perhaps I have odd priorities in my life--we'll get to see the 2-hour season premiere of Battlestar Galactica, my favorite favorite show. It went on summer hiatus back in March, around the time of my surgery, and I have been looking forward since then to this premiere--partly because I love the show, but partly because I expected all along that treatments would end about then. The confluence is gratifying.

Hair updates soon, I promise! And the diet is still going great--I'm almost 20 lbs down now.

Grumbles

Two days after my last post, I went to the urgent care clinic in Manhattan Beach, and was diagnosed with a bacterial infection and given amoxicillin. I had to cancel my MBA classes for the first time ever when I could barely speak or walk on Tuesday. And I still have most of my symptoms today, Sunday, two days into Week 3 of the cold.

We'll post new hair pictures soon, because there is visible progress--although again, it's 7 weeks after chemo, and I thought I'd have a lot more hair by this time. Eyebrows and eyelashes are coming back well, though they're still stubby. Basically, I am making forward progress, but it is very, very frustrating how slowly that progress occurs--and how many steps backward I have to take on the way. The cold is a prime example. It really sucks to get so sick when I expected to be healthier and healthier.

I've heard many people say that things get harder after treatment ends, before everything gets easier. That is starting to make a lot of sense to me. I am still 2 weeks from the real end of treatment, but I want my life back NOW, and it doesn't work that way. Argh.

Quick update

Things are going OK. I've finished my 3rd week of radiation, if you don't count the one day off for Labor Day (which has to be made up later), so I'm halfway to the end of that treatment. Yay. So far I seem to be responding fine, at least in terms of side effects. I have a little bit of redness, not exactly like a sunburn, but like a little mild pinkness from the first day of summer sun after turning pale all winter. No real itching, which is a common source of trouble (scratching leads to faster skin degradation). I bought a couple of non-underwire bras, due to the edict of the rad onc, but one of them is actually more irritating than my underwires. And I've had some heavy-sleepiness kind of fatigue, which I can't be sure I should blame on radiation. It generally hits after a long day of teaching and meetings, and may just be because of that. So, in general I am doing fine with regard to radiation.

In other ways, though...not so good. I got a cold 9 days ago, immediately after a wonderful massage. Massages often stir up toxins in the body and you get flu-like symptoms, and this was really minor at first. I didn't have to take much downtime and was able to teach and attend to my duties all week. But two days ago, Noah came down with it in much more serious form, and then last night I was hit with a real whammy. My temperature shot up to 101.8, and the rad onc had said I must call my regular oncologist if it was over 101. So, at 11pm, I was calling the after-hours line at USC for the doc on call. His verdict: it's a viral infection, not what they worry about for chemo/post-chemo patients. I should hydrate and keep pounding the Tylenol/Advil. Fortunately, overnight the fever broke. But Noah and I are both feeling just lousy today. Lots of sleeping and moping, and not a lot of moving. He struggled out the door late last night to get us more symptomatic relief (Nyquil, etc.), but today we both seem unable to do much. Thanks go to his dad, who's in town and who dropped off lunch (which will probably also be dinner--it was big).

I think this is not cancer-related, and not even particularly compromised-immune-system- related. It's interesting to be just "normally" sick again--and hard to avoid letting it take on bigger meaning. The hardest part is that we are both laid low at once, which means neither of us can do the caretaking for the other. I just hope that we both recover quickly (for me, that my body is strong enough to do so). Like I said, our lives today are all about the sleep and hydration. Will let you know how it goes.