Thursday, March 31, 2011

The Twenty Minute Challenge

Did you get your cancer fighter Over The Hills team member t-shirt yet? Orders open for a very short time, all profits go to Breast Cancer Action. Details here.
Yesterday, I met D~ at the pool for a swim and she asked me what, if anything, I'm doing for myself. She didn't want to hear about cancer-related activities, not blogging, not treatment, nor feeding myself, exercising, sleeping, or chores. She didn't mean time spent procrastinating either, surfing Youtube and Twitter and Netflix. She meant time cordoned off for activities my heart desired. For example, she told me about a stack of books she could never find time to read. I knew what she meant. My stack is a list of creative self-directed projects in my studio/office that I never find time to explore.

So D~ challenged me to dedicate twenty minutes that very day to me-time. I embraced the challenge, and I challenged her back.

She made a face.

It think it's accurate to call that face a grimace.

I will humbly admit right now that I have never (yet) spent time with D~ outside of the pool, but I felt certain that I had her pegged. Between her business, her marriage, her dog, and her need to move (She's a triathlete. A two-time Ironman triathlete at that) I thought, No way, those books will not be touched today. I also thought, I will easily dive into my twenty minutes of me-time and it will be a great long-awaited pleasure.

Can you see where I'm going here?

D~ emailed me two hours later reporting that she'd spent not twenty but twenty-five luxurious minutes reading. You? she demanded.

Damned competitive athletes with their steely self-discipline. I was trying to finish my taxes.

Millie is my role model.

And what did I do next? I cooked, ate, paid bills. I walked the dog, returned phone calls, and, with the help of a friend, planted peas and greens in the garden. Does that count? Maybe I could convince D~, but deep down I knew, as much as I enjoyed gardening and as good as it felt to get it done, it wasn't me-time. And then came dinner, dishes, blogging, more work on the tax return...

Long story short, I failed.

The first step toward change is admitting you have a problem.

Today I had a doctor's appointment and errands and still some chores ahead of me as the day winds down. Tomorrow is chemo, a busy day which will end in a Benadryl-induced fog. Saturday I'll be amped on steroids. Sunday I'll begin to crash.

But I'm not giving up. If I don't succeed to find a me-time window on Sunday, then Monday for sure.

Mark. My. Words.

Wednesday, March 30, 2011

Hot Flash News Flash

Did you get your cancer fighter Over The Hills team member t-shirt yet? Orders open for a very short time, all profits go to Breast Cancer Action. Details here.
Have I mentioned that Taxol, my current chemo drug, induces hot flashes and night sweats?

My hot flashes are generally mild. At any given moment, a heat wave rolls up my spine and my skin steams. I strip off extraneous clothing, my scarf and sweater and the sweater under that (okay, so I tend to be cold), and my hat, if I'm wearing one. A minute or two later, cool and dry again, I put everything back on.

Here's a weird thing: I've noticed that these internal heat waves arise at moments when I'm worrying about letting someone down. For instance, the phone rings and I don't have the energy to get off the couch. Hot flash. I tell my husband I'm not up for watching a movie after all. Hot flash. My dog looks at me with sad eyes when I won't give her a bite of my food. No no no, that doesn't do it. I'm not that much of a sucker.

In the months leading up to my divorce, I had massive night sweats, so much so that I'd wake up, night after night, soaked. I'd need to fetch towels to lay under and over me between the sheets, to create a little sandwich-oasis of dryness to get me through the remaining hours until morning. The day that marriage blew up, my night sweats ended. (Then again, it was a long while before I actually slept properly again, so maybe that has something to do with it.) But I didn't forget that experience, and, reading about Taxol, I hoped I wouldn't be revisiting it.

So far, it hasn't been so bad. I've managed to wake up in time to throw the blankets aside whenever a heat wave encroaches. Last night, however, I rode through so many waves it was like an all-night roller coaster. Luckily, the one time things got really steamy — while dreaming an argument with my mother — I was at the extreme edge of my side of the bed and J~ was curled at the edge of his. I aired myself out, shifted out of the damp spot into the middle of the bed, and went back to sleep.

I don't know if this will apply to the night sweats, but I do plan to keep noting what I'm thinking about when the daytime hot flashes hit. I didn't realize I was concerned so often about keeping everyone happy! I want to divest myself of that notion. Because, news flash, not only is it not my responsibility, it's simply not possible.

In normal life, I won't have this hypersensitive internal thermostat letting me know when stress hits. Better learn from it while I can.

Monday, March 28, 2011

Join the Team!

Chemo #7?
Mission accomplished.

Coming right up.

But first, did you read this post about the the relay team of twelve "Over the Hills" who are, in my honor, running two hundred miles and raising money to fight breast cancer? Did you catch that you can join the team (no running required) by purchasing your very own official OTH shirt, designed by me? Now's the time to order.

(See a close-up of the logo and more about the design on the original post.)

They're good ones: 100% cotton, teal, Hanes 6.1 oz. Tagless® ComfortSoft® T-Shirts
If you live near me and prefer to pick up your shirt rather than pay shipping, no problem. I'll let you know when they're ready.

Choose with or without shipping:

Select size:

This is on the back:

All profit from t-shirt sales will go to Breast Cancer Action, a dynamic national nonprofit advocating for breast cancer patients in the political arena, raising awareness of disparities in survival rates related to racism and economic class, and working to eliminate environmental risk factors, pollutants we are all exposed to against our will.

Questions? Prefer to pay by check? Don't want a shirt but you'd like to make a donation? Drop me an email and I'll get right back to you.

Over the Hills is also raising money for the Susan G. Komen foundation (more on that here).

And now, without further ado, the vlog continues: Join me for Chemo #7, won't you?

Fair warning: Millie is barking loud at the beginning of this one.

More of my videos here.

Sunday, March 27, 2011

Salad Days

A week off from chemo. More of my videos here.

Coming up next, video from chemo #7, where you will finally get to see my regular nurse in action.

In the meantime, three days of salads, for your viewing pleasure and gastronomic inspiration:

Salad 1: Napa cabbage, spinach, red bell pepper, carrot, chick peas, marinated portabella mushrooms, balsamic vinagrette

Salad 2: spinach, celery, fuji apple, red onion, and a dressing of fresh lime juice, almond butter, agave, and tamari.

Salad 3: Mixed baby greens, cabbage, pink grapefruit, avocado, walnuts, adzuki beans, toasted walnut oil, pomegranate vinegar

Friday, March 25, 2011

Chemo #7


- up at 6:15, drove J~ to the bus

- off to the gym: 4000 yards in the pool. Feeling surprisingly great. Wished I had time for another 1000. And I never, not even pre-cancer, swim more than 4000.

- Home and food

- Dog walk in the woods (short one, running out of time)

- Pack a lunch, off to Hartford to pick up J~, next stop: cancer center

- stuck with needles 5 times (once for blood tests, four tries for chemo - apparently I shouldn't swim so much before chemo, or at least I need to hydrate a lot more).

- Home again, on the couch all evening.

- On the agenda now: this blog post, start movie files rendering so that I can edit tomorrow (it will take all night) , brush my teeth, kiss my husband, maybe read a little Lance Armstrong Every Second Counts, sleep.

J~ just asked me, "Do you think the Benadryl is wearing off and the steroids are kicking in now?"

Judge for yourself from these pictures, taken since I've been home, presented to you in reverse chronological order.

Thursday, March 24, 2011

Halfway Through Chemo

I had a craving for gravy and this hit the spot: crimini mushrooms and red onions sauteed in olive oil, a splash each of tamari and mirin (aka soy sauce and japanese rice wine), rosemary, and black pepper. Chick peas, dandelion greens, nutritional yeast, and a twist of lemon added later.

I'm ten weeks into chemo. With a week off behind me, assuming there are no other mishaps, I have ten weeks to go.

This week off has been strangely depressing. Not because I feel terrible. I don't. And not because I feel great. I don't. But because I feel flat. I think I've been motivated all along by fear and adrenaline (a.k.a. steroids) and now I've begun to crash.

When I heard last week's chemo appointment was to be canceled, I wept. I hated the thought of my treatment derailed or delayed. I want it over with so badly. Then I rallied, deciding that this will be the week that I reclaim some strength, grab a big gulp of life before submerging once again into the grind.

It didn't exactly happen that way. I'd aim to meet friends at the gym in the early morning. Instead I slept late. I puttered in my office. I dressed for a run but instead only walked. I'd intend a modest 2000 yards in the pool and head for the showers 500 yards short. I'm sure all of this was good for me, but today, chemo-eve again, I feel as though I've lost my rhythm, my present-moment focus. Those ten weeks behind me seem to have passed so quickly, a wasted swath of my life. The ten weeks ahead of me seem to stretch out to the horizon of time.

Worst of all, I got a little taste of recovery and what a long road it will be. It's like eating one chip. Better not to have any than to be denied the whole bag.

I get overwhelmed when I remember that chemo isn't the end of it. There's five weeks of daily radiation following that, and then Tamoxifen, a hormone-altering pill I'll have to acclimate to also. When I take into consideration the journey so far, beginning with my first biopsy, it will be a full year before I can begin to put this cancer-focus behind me.

On the bright side, with taste-altering and mucus membrane-wrecking Adriamycin and Cytoxan behind me, I'm gradually reclaiming the landscape of food that I once enjoyed and worried I'd never be able to stomach again.

Yesterday's salad: Chopped green apple, red pepper, carrot, celery, dandelion greens, shredded beets, and kidney beans. The dressing is tahini, lemon, turmeric, and basil. So good.

For instance: salad. It was bland, the texture so rough it seemed to scrape my tender mouth and throat. But lately, I'm back to salads every day, and enjoying them.

And tea. I know this isn't common, but for me, the mere thought of the stuff turned my stomach. Perhaps because I brought some to my first chemo appointment? I still can't even look at that thermos without feeling queasy. But I have a cabinet full of every possible green, fruit, and herbal tea known to man, which I'm finally enjoying again. Spearmint and honey last night, cranberry this morning, Rooibos this afternoon. And tomorrow? Ah, who knows. The world, or at least that cabinet, is mine.

Tuesday, March 22, 2011

Put up Your Dukes, Breast Cancer

More of my videos here.

My brother A~, my husband, and ten of their co-workers ran a 200-mile relay race last May, each taking three turns on the road over a thirty-hour period. The team was named the Pluto Liberation Front. Apparently the team felt strongly about size-ism in astronomy and they were upset about Pluto's demotion from noble planet to mere gaseous mass of rock and space-debris.

Either that or no one could think of a name they liked better.

This year the team has taken up a more serious or should I say an actual cause. They're raising money to fight breast cancer, in my honor. My brother named the team Over the Hills as a nod to the aging team members, the race route, and also as a subtle, perhaps obscure reference to breasts.

Ragnar, the race sponsor, provides an easy tie-in with the Susan G. Komen foundation. Many have already contributed through the web page my brother set up for that purpose.

While it means a lot to me that friends and loved ones have opened their wallets in my honor, and I have nothing against the Komen foundation, they do wonderful things, I have to admit I am ambivalent about being a poster child "for the cure." I've said this before, forgive me loyal readers, but I'll say it again. A cure would be nice, it would save a lot of lives. It would also make some lucky pharmaceutical company a mountain of cash.

Which is why I'd rather focus my energy on the aspects of this epidemic that are not already addressed by a profit motive. I'm disturbed by companies like Eli Lilly that profit both from drugs to fight breast cancer while manufacturing products linked to causing it (rBGH - banned outright in many countries, including the entire European Union). I don't think enough resources are directed toward addressing this and other environmental connections with cancer.

There's a foundation, Breast Cancer Action, that digs up just these kinds of troubling realities and does something about it. They also work to make sure that the disenfranchised among us get care as good as I do. Black women with breast cancer die of this disease in much higher numbers than white women, for reasons that can and need to change.

So here's what I did. I designed a logo for the running team reflecting my brother's subtle reference to breasts as "hills." And then I designed the official team t-shirt, where the reference is anything but subtle. I wanted this shirt to get you thinking about breasts and how vulnerable we all are. I'm going to sell it to anyone who wants one, all proceeds going to Breast Cancer Action. We're still hashing out the details on shirt color and price, but it'll likely look like this:

With this on the back:

What do you think?

Stay tuned for t-shirt purchasing details and the Over The Hills Komen donating link as well. I need to get that from my brother.

Monday, March 21, 2011

Baby Steps

More of my videos here.

I have been aware for some time now that the links I offered on this blog were woefully out of date. Not a one pertained to breast cancer and worst of all, some led to an embarrassing dead end, "Error 404: Page Not Found."

A month or so ago I deleted the worst offenders. Since then, I've struggled to envision a way to organize information better. I want to offer links that pertain not only to the specific topics I cover on this blog, which, if you haven't noticed, are numerous and far-ranging, but also I wanted to include links to topics I am yet to even broach. For instance: Things that make me laugh. It seemed an unwieldy list.

I suppose I made too big of a project of it in my mind, circling the pond, dipping in a tentative toe here and there, fretting over the best place to dive in.

The hell with it. It's time. Today I dove from where I stood.

The result? A brand new Resources page. It's dreadfully incomplete and not very inspired, but I plan to add to it over time and I welcome your suggestions.

In the meantime, I ask you, what projects are you not working on? What baby step can you take in the direction of getting it done?

Sometimes we need to bite off a smaller chunk of the task, sometimes we need to release the expectation of perfection right out of the gate, and sometimes the key is simply to roll up your sleeves, strap yourself in, and just do it.

Friday, March 18, 2011


My first bike ride since cancer treatment began. More of my videos here.

Every year for perhaps a decade now I've had the same New Year's resolution. I still find it challenging, and it's a good one, so I renew it again and again. It goes a little something like this: Give every compliment that comes to mind. 

Something happened yesterday that convinced me I will do this religiously for the rest of my life.

It all started because I took the recommendations of two friends and made two calls, one to a chiropractor, one to a bike shop to schedule a professional bike fitting. I've had increasing stiffness and pain in my hips and lower back after bike rides over the last two years, so much so that I don't ride as much as I'd like.

I'll see the chiropractor next week. I went to the bike shop yesterday afternoon.

If you've never had a bike fitting, let me clue you in: it begins with questions about your biking habits, goals, and challenges, then you change into biking gear and proceed to have your body scrutinized, analyzed, tested, and measured, on and off your bike. After all that, alterations to the bike seem like an afterthought.

Normally I am uncomfortable having a strange man get so up close and personal with my body. Now that my body is bald and one-breasted, I imagined I might feel worse than ever, especially if the strange man in question was uncomfortable with me.

I was nervous.

The guy who did my fitting, M~, was younger than me, which worried me at first, but he was relaxed, personable, and professional. It went well. So well that I forgot about my altered body entirely until it was time to go put my street clothes on again. He had done me right. When I realized this, I also realized I was thinking of a compliment. According to my resolution, I had to give it.

So I screwed up my courage and told M~ about my resolution, that it felt embarrassing but I had to tell him that it has been just a few months since my surgery, that I'm still uncomfortable in this newly configured body. But during my fitting, I forgot all about it. "That's my compliment," I said. He had put me at ease.

"Thank you. That means a lot to me," he replied. "This is going to make me tear up to say, but I had a girlfriend who had a double mastectomy." His eyes were indeed wet, and red. I welled up too. We looked at each other and smiled through the tears. "Can I give you a hug?" he said

"Please!" I laughed.

For the record, he became her boyfriend after the mastectomy. And they are still in touch, still friends. She told him the hardest thing was absorbing the pronouncement of her illness when she felt just fine. (Oh, can I relate to that!) She had a recurrence, almost five years out, discovered it in the emergency room after a competitive skating accident. "Roller Derby saved my life!" she said.

How cool is that?

And now he and I are friends on Facebook.

And perhaps we'll live happily ever after.

And maybe I'll take up roller derby.

In any case, I will be all the braver about giving compliments because of this day. I hope this little story inspires you to do the same.

Thursday, March 17, 2011

The Plot Thickens

No Chemo tomorrow. My oncologist wants me to postpone for a week.

Why? Because my fingers and toes are sore and hypersensitive. Not so bad that I can't button my shirt, but much worse this week than last. The good doctor is concerned that I am headed toward a more serious and long-term case of peripheral neuropathy. She has patients for whom this has happened. "It's a major quality of life issue," she warned when we first discussed my chemo plan.

I want to be around to see my husband and stepson and friends and siblings mature, my relationships deepen. I want to be old and wrinkly one day, and sit and laugh tenderly with my loved ones about when we were so young and hot-headed and awkward at expressing how much we love each other. Do I want that more than the ability to hold a pen? Tie my shoes? Walk without stumbling? Not an easy answer.

Quality or quantity? It's not like comparing a generic sheet cake to a gourmet truffle. When it comes to living, quality matters but so does quantity. They are intrinsically related. At least in certain areas, life improves with age.

Will a one-week delay impact my prognosis? My doctor thinks not. I hesitate to ask for evidence to back this assumption. She often responds to my inquiries as if I'm challenging her, as if I don't trust her knowledge or judgment. I have to work to rephrase and defuse. It's tiring but I find that she does come around. And when there is no evidence to give, she'll say so.

She's a well-regarded oncologist. Some say the best. But more and more often I find myself thinking she might not be the right match for me. She's sickly looking herself. It's a surface issue, but it affects my ability to believe she knows what true health feels like, and therefore I wonder if she values it, or trusts it. She often frets about her patients who exercise, jokes about them "sweating like pigs" "sweating like dogs" in the gym, more than once telling us how relieved she feels to be there on her treadmill in case one of her patients, an aerobics instructor who works at her gym, has a heart attack mid-class. Recently, my oncologist expressed pleasure that I'd exercised less in a given week rather than displeasure about the reason (my stamina had diminished.) Also, and this is a big one, she has a tendency to regard more drugs as better whereas I prefer to look for places where less drugs are reasonable. A solid case can be made for her approach to the cancer battle itself, but when it comes to medications for short-term side effects, I'm of a different mindset.

Switching doctors midstream, however, feels exhausting.

Doctor disillusionment aside, the plot has officially thickened. Just two cycles into the prescribed twelve Taxol infusions, even with the week off and increased vigilance about taking supplements (there are several that can help stave off neuropathy) I am wondering if I'll be able to stay the course.

On the horizon lurks an alternative chemo drug, Taxotere, but it's harder on the body in multiple ways, and perhaps also less effective.

Time will tell...

Wednesday, March 16, 2011

Bonus! New Vlog Today

I already posted once today, but I wanted to send out a P.S.

I just got this online. This vlog deals with day-of chemo number 6, including footage from in the hospital.

If the sound and image don't line up right, I apologize. It worked fine in my computer but YouTube compresses things and something went wrong on their end. I'm trying to learn why this happens so I can prevent it in the future...

A Few Things I've Noticed

1. Chemo is most definitely NOT sexy. What I'm trying to say here is that, though I still like kissing and occasionally feel stirrings for more, my appetite for sex is greatly diminished. It's the difference between feeling ravenous and, every rare once in a while, mildly peckish.

Breakfast: blueberries, plain soy yogurt, lavender

Soup of the day: mushroom, zucchini, tofu, miso, plus the soup base I made in this video

Lunch. Picture taken by Lori

There are people on chemo, presumably more libidinous or more determined or at least less totaled by the drugs, for whom this is not true. And there are products (e.g. lubes) that are said to help, but neither J or I are interested in forcing the issue. I do feel sorry for him though, and if I wanted to put my attention on it, I could feel quite sorry for myself too. I like sex, after all, and I like it with my husband especially.

We talk about it, we make time for intimacy nonetheless, and we agree that there is so much to be thankful for in our relationship that we're okay with this temporary drought.

Deep down, I must confess, I'm not convinced that this is temporary. I'm supposed to go on hormone therapy after chemo, which will throw me into permanent early menopause, that is, if the chemo hasn't done that already.

So, I'll believe it when I see it.

2. The life and death anxieties of cancer do not spare you from the mundane anxieties of daily life. In fact, it seems to magnify them. For instance, I tend to be very critical with myself about how I use my time. Now that my time might be significantly more precious, I am all the more angstful about wasting it.

Lately, I'm doing my best to reclaim the definition of waste. Only I can determine if time spent flat on the couch watching stand-up comedy on Netflix is life-affirming or life-avoiding. The answer changes from moment to moment. And it depends on who's on stage.

Another thing, in spite of having one breast and no hair, I still worry about gaining weight. I tell myself it's for legitimate survival reasons - less body fat means less estrogen and I have a cancer that is stimulated by estrogen. But really it's all about the daily reckoning in front of the mirror. The fact that I'm thinner than usual feels like a reprieve. As a way to distract myself from the baldness and the scars, I focus on the more pronounced angles of my face, my more visible muscle tone, my narrower waistline and two-sizes smaller jeans.

In the past if I felt bad about what I saw, I reacted by dieting, or rebelled with second and third helpings and in-your-face brownie sundaes. With overweight parents, the worry that I would be fat hovered over my childhood in the form of well-meaning critiques of everything I ate. It took me many years and great struggle to stop flip-flopping between stricture and rebellion. These days I can usually grasp that I'm lovable no matter what I see in the mirror, and feed myself from that knowing, making choices that give me the most pleasure while still nurturing my health.

But it isn't always easy, and I still worry about gaining weight.

3. You get used to it. In spite of all that body image baggage, I sometimes forget what I look like. I'll be talking to someone in the grocery store or locker room, and suddenly it will dawn on me that I am wearing a bandanna on my head. And then I'll remember that I am bald. And that I have just one breast.

It's a testament to whomever I'm talking to that I can forget. Some people relate to me now like I'm from a different planet. It's okay, I'd rather they try than avoid me entirely. And besides, I can relate. I feel like I'm from a different planet too. On planet Cancer, a good day is when you feel almost normal.

You get used to that too.

4. When it comes to life and death decisions, there's never enough information. This is true with cancer and everything else. It is also true that we, every one of us without exception, makes the best decisions possible with the information we have in the moment. Of course, sometimes emotion occludes some bits of information while blowing others out of proportion.

With my new chemo drug, Taxol, the biggest concern is peripheral neuropathy. It's a common side effect that alters sensation in the fingers and toes. For many there is tingling and numbness. It can get so bad that you can't hold a pen because you can't feel the grip, can't cook, can't button your clothing. It's a serious quality of life issue. Unfortunately, with this drug, administered weekly, it may not be temporary.

For me, two cycles in and ten remaining, my fingers and toes feel bruised, sore, and hypersensitive to cold and heat. I don't know how much worse it might get. I don't know if I'll recover normal sensation or not. I don't know how a break from chemo, or a change of drug, both possible responses to this troubling development, will effect my prognosis.

If all goes according to plan, I'll be talking to my oncologist tonight.

5. There is always something to celebrate.  Sometimes it's a comfy couch and Wanda Sykes on Netflix. Sometimes it's a well-timed hug. Sometimes it's simply that a very hard day is finally over. Today, I'm celebrating that I'm not lying on the couch wishing I had the energy to sit at my desk.

In fact, here I am, at my desk feeling productive, for multiple days running:

Monday, March 14, 2011

Figuring it Out as I Go Along

When I have energy, I expend the first chunk of it on exercise. Then comes feeding myself, stoking the wood stove, tending to the dog, and the very barest basics of personal hygiene. Whatever stamina remains goes into work (the bill-paying kind), then my own pet projects, and last and most certainly least, household maintenance. Laundry, dish washing, plant watering and the like are far far down the list of priorities.

Dusting? Never heard of it.

Pre- and first few days post-chemo #5. More of my videos here.

Truth be told, I often don't get much past feeding myself before I hit the couch. Lately, however, there's been a little more fuel in the tank and I'm beginning to reclaim the vast, dusty, abandoned territories of my life one dusty square inch at a time.

As you may have noticed, the big new personal project of late is vlogging.

These little videos are tremendously time-consuming not to mention hard drive depleting ventures. Luckily, most of the effort happens without me. Editing a ten-minute video may take me an hour or two, but the two dozen or so hours of loading raw files, compressing, rendering, and uploading to YouTube happen largely on autopilot.

Then again, it took a while to set up and learn my video editing software, to create a storage system for all of my rapidly multiplying files, and to get the whole fabulous autopilot operation up and running.

All this is to say, if it feel as though I've been neglecting you, dear readers, rest assured, you are very much on my mind. I have profound thoughts, candid updates, personal feedback, and provocative inquiries lined up in a long, patient queue in my so far (knock wood) not too chemo-addled brain. And of course I've got videos, two more since my last post, plus another on the way (literally, it's uploading right now). And there are several more in the works, including one answering the question, Did she or didn't she bike like Lance on Saturday?

Friends with breast cancer. More of my videos here.

Okay, okay, I'll tell you: I biked. Just like Lance.

Lance on chemo, that is.

Before I sign off for tonight, I want to thank all of you for your thoughtful comments on my last post, the one about crying. If you haven't had a chance to check out these responses, you might find it interesting to take a look.

If you identify with those who spoke about crying in private, or if you are one of them, I have some questions for you to consider: What happened when you were a kid and you cried? I'd bet you money that you didn't get the relaxed, caring attention that you needed. Better to cry alone than not at all, right? Good choice. But consider this: What if maybe, just maybe, there are people in your world now that you can trust with your authentic unguarded self? Even if those people are bewildered and uneasy, can you imagine the possibility, slim as it may be, that there are one or two people who won't stop caring about you or respecting you if you cried full-out right in front of them, and might just trust you enough to follow your lead?

Bottom line, we're all figuring it out as we go along. Try not to be too hard on yourself.

Surviving Taxol. More of my videos here.

Sunday, March 13, 2011

The Thing About Crying

For when you feel troubled but can't pin down the source. More of my videos here.

Children are experts at it. Have you ever watched them? They feel the shock of some small distress and immediately tears fly. This is assuming they haven't already been taught that crying is bad.

We're all given that message at some point. Generally, boys get it earliest and most relentlessly. Crying is perceived as a sign of weakness. Men are not supposed to be weak. It's a major silver lining to sexism that, as the "weaker sex," we women are allowed our tears. But even so, we could all use a lot more support and encouragement to express our emotions. I think our lives would go better. We'd have closer relationships. We'd feel less ashamed of ourselves, less afraid, less worried, less frustrated, less addicted, less alone. Less sad!

Here's the thing about crying: It's not actually a sign of weakness, nor is it bad. It's actually good for us, a natural healing mechanism. Watch a child do it sometime, if you can. Or if you have kids of your own, try an experiment. When a child can rush into the arms of a relaxed, trusted adult and just cry cry cry until good and done, without that adult making any attempts to interrupt or end the tears (including soothing noises and rhythmic jostling) eventually that child's attention will just naturally emerge from the distressing event and he or she will bounce back with energy and vigor into the day. It will likely take longer than you expect. There might be several stops and starts before the tears are truly done. But it will happen, like the sun emerging after a passing storm, without residue of bad mood, or neediness, or overblown fear of whatever brought the tears on in the first place.

Some suggest we should choose laughter over tears. I like that idea. Laughter is good for us too. But it isn't always an option. Sometimes you have to pass through the tears before you can get to laughter.

When was the last time you had a good cry?

Friday, March 11, 2011

Just Call Me Lance

If the fact that I have hair in this picture didn't tip you off — that, and two breasts — let me clue you in: this photo of J and I is NOT recent. I swiped it from a biking buddy's Facebook album (thanks QB) to illustrate the direction my mind keeps drifting now that the snow is melting and the temperature keeps creeping up.

I love riding and I love the companionship of my club, but biking makes me nervous right now. Not just because of my usual litany of complaints — lower back and hip stiffness and pain, foot numbness and pain — but also because on chemo I find my energy level can plummet without warning. Out on the road there's no option. As they say in our hilly biking community, what goes down must come up.

Another thing I was taught as a beginner, shortly after purchasing my first and only intimidatingly fancy new road bike. It's a deceptively tricky bicycling fundamental: Keep the rubber side down.

I'm considering joining a group outing tomorrow, if only for a little while before peeling off and heading home again. Even if it feels great I expect fifteen or twenty miles will be plenty.

Or maybe I'll wake up in the morning utterly depleted. Keeping myself upright without a bike might be challenge enough. In that case, I will remind myself that this is temporary. That it may not happen as quickly as I'd like, but I will finish this damned treatment and I will recover.

What goes down must come up.

Chemo #6 today. More on that soon...

Thursday, March 10, 2011

Chemo Eve - Again

I have officially survived my first week of Taxol. It feels strange to be going back for more already, strange to notice that there are eleven weeks left of this. Even more strange to notice that nine weeks — five of sixteen treatments — are done. It's dawning on me, on some new visceral level, that this will indeed end.

This morning I swam with my usual buddies, one of whom is into her second week of radiation. (No chemo for her, luckily.) She's tired, a little sore, but still setting a challenging pace in the water.

I had lunch this afternoon with a woman I've known since the fifth grade. We have seen each other a mere handful of times since high school graduation — reunions, a wedding... Though I'd always liked her, we'd never been particularly close. We're sisters now. "Could you have ever guessed we'd find ourselves here?" I asked her. We both shook our heads. Of course not.

Her breast cancer is more advanced than mine, her treatments are not finite. Rather, the hope is that she can stay on them for a long time, that they continue to benefit her, keeping her cancer at bay. She has put her beloved teaching career on hold.

While I cling to the idea of light at the end of this tunnel, for her, the hope is that the tunnel continues a good long while. She is matter of fact about it. She has young children. She wants to live.

Another friend, younger than me, has been fighting breast cancer on and off for years. She is a brilliant mathematician with an infectious grin. Like my former classmate, she has also left teaching for long-term disability. Cancer is in her spinal column now, in the marrow, pushing through and fracturing her bones.

It upsets me that so many fine women of my generation are facing this disease. We have so much to offer our communities, our families, the world. It is awful that so much beautiful liveliness is diverted into such a pointless black hole. There are so many other things we'd like to do. It's not fair.

It's been a rough week. Pumped up on steroids, I had an energetic Saturday. But for most of the week that followed, I've had a headache, low energy, and searingly dry eyes.

Even in the best of times, I often resist sleep, conjuring one more thing to do, to read, to watch, to write, anything but succumbing to the end of a day. On the surface it seems that sleep is boring, but underneath that, I know, when I find myself thinking this way, there are emotions I'm struggling to avoid. Eventually, after days or even weeks of this, sleep is all I can think of and I finally give up, nap or go to bed early, and face the void. A few tears into my pillow and I can finally sleep well again.

Knowing this is my pattern, and that I was once again engaging in it, last night I turned off the light earlier than usual and went bravely and alertly into that dark place. And found myself remembering a rough patch of childhood sleeplessness when I was enraged with my Dad. I felt surprised but also detached from those old feelings, only remembering how awful it had been to be consumed by them, to feel so powerless and overcome. And then I slipped off into a good long sleep.

The mind is a mysterious thing.

Wednesday, March 09, 2011


Since my previous post, several excellent suggestions have emerged for additional reading:

I haven't read this one, but my husband has and we've had some interesting conversations as a result. Cancer has a long history. This book lays it all out.

This title has been recommended to me several times, an inspiring account of taking charge of one's healing by bolstering the spirit with hopefulness, humor, and the healing power of the mind.

This one is my own suggestion, inspired by some insightful comments on the last post. It's a beautifully written exploration of environment and disease and the scientific and political challenges to tracking the connection between the two. I read it many years ago, and I'm pleased to see there's a second edition.

Tuesday, March 08, 2011

Cleaning Up

Cancer or not, are you looking for inspiration to healthy-up your life? Here's my recommended reading list, click the book images for more info:

Eat to Live by Joel Fuhrman, M.D.
I read this years ago and never quite forgot it (though for a while there, I forgot the title and couldn't find the book again, much to my dismay). Dr. Fuhrman is plain-spoken, inspiring, and undeniable. His orientation is primarily toward weight loss, and his plan makes it easy. But it's not just about how you look. Dr Fuhrman cites so much compelling evidence that this is the healthiest way to live. Like I said, it's inspiring. It's his book that got me started reading the books that follow. I highly recommend this as a good place to start.

The China Study by T. Colin Campbell.
I learned about this book from the previous author, and couldn't put it down. Not only does this book lay out the findings of major worldwide studies on the connection between diet and disease, but it also details the not always stellar politics of governmental health organizations where the author held advisory positions. If you pick no other book from this list, I recommend this one.

Anticancer, A New Way of Life, New Editionby David Servan-Schreiber.
This book picks up where T. Colin Campbell leaves off. Written by a doctor and cancer survivor, this book goes deep into the most recent evidence for the connection between diet, lifestyle and disease and how our bodies specifically benefit from what we normally identify intuitively as simple, healthy choices.

Crazy Sexy Diet: Eat Your Veggies, Ignite Your Spark, and Live Like You Mean It!by Kris Carr.
Yup, I'm recommending it. This is the book that takes you by the hand and leads you down the scary path of letting go of the bad habits and introducing the good. My copy just arrived a few days ago. I'm happy that I bought it.

Do you know about Kris Carr? Perhaps you've picked up on a little of the complicated feelings I have about the "Crazy Sexy Life" movement she spearheaded beginning with her 2003 documentary, "Crazy Sexy Cancer." The healthy and active life choices she promotes, including a largely raw foods, vegan, sugarless diet, were exactly the choices I was passionately embracing when I received my cancer diagnosis. It's not the lifestyle that bothers me.

Nor is it the philosophy. Life is crazy, in all the positive and the negative connotations of the word. And at its innermost vibrant core, the energy of life is also sexy. Life begets life. For our species anyway, sex is how it's done.

And yes, I think it's good to recognize that people with cancer are still fully human. We don't want to be relegated to pedestals of tragic passive ethereal delicacy. We don't want to be regarded as saints or heroes. We don't want our struggle to be glossed over or glamorized. We just want to live.

So where's the problem? It's not Kris Carr herself. Though she is accused of it by those who don't read beneath the surface of her titles, I do not believe she glamorizes cancer. Although I'm jealous of the fact, it's not that, for her, a "wait and watch" regimen of healthy living bolstered by daily wheat grass shots and regular colonics (aka "high enemas") were a reasonable, oncologist-sanctioned treatment plan. (Just to clarify, my jealousy does not extend to the colonics. I have never had a colonic and the idea of one most definitely freaks me out.)

The thing that gets me is, it worked. Her tumors shrank.

Which means I can't bring myself to walk away from the ideas. Which makes me notice that lately, I kind of want to.

There is so much in the media right now about how to prevent cancer with diet and exercise that it makes having cancer feel like a giant humiliation of bad lifestyle choices. I know it's not so simple. I know it's not my fault. But I hate feeling like the world might see it that way. I understand the temptation. I've been on the other side of this scary fence hoping to stay there, wanting to believe it was under my control. Even today I was lectured about what kind of cleaning products I should be using from a well-meaning loved one theorizing about the sources of breast cancer. Never mind that all I use is vinegar and water. Never mind the sexist implications of this theory. Never mind that the lecturer was a smoker.

We as a society have so little attention for addiction. I feel for folks with lung cancer. Do they receive the compassion they deserve?

But I digress...

It's very easy to get caught up in thinking that every non-impeccable choice I'm making, dietary and otherwise, is paving the way to my own demise. It doesn't help that chemo has rendered my mouth hypersensitive to texture and desensitized to flavor. Therefore, meat, fat, starch, and sweets have become much more appealing. Salad, previously a twice-daily pleasure, has become a challenge.

But here it is, the bottom line: I'm done whining about it. I'm done wallowing in self-pity and frozen treats. Temptations will always be there, cancer or not. I can refuse to blame myself for my disease without denying that my choices impact my health. I'll be gentle with myself of course. But I'm done holding back from my most vibrant life.

Monday, March 07, 2011


Every night for going on two years now, J and I have shared one thing we love about each other and one thing we love about ourselves. It's our bedtime ritual and it is often the anchor point of my day.

Most Sunday mornings, he makes buckwheat pancakes for the family, which we festoon with fruit and nut butter, yogurt and maple syrup. We've drifted away from this lately but for a long time we ate while reading and discussing "The Ethicist" column from the New York Times Magazine, each of us presenting a point of view before delving into Randy Cohen's take on the issue at hand. (This weekend I learned that Randy Cohen no longer writes this column.)

Three or four mornings a week I swim laps, often with friends. We usually start with a 500-yard warm-up followed by two or three hundred yards of kick-boarding and chat. And then we challenge each other with ideas for drills to do next.

I walk my dog just about every day, often twice a day when I'm feeling well, almost always with a tennis ball in hand and a pocket full of kibble. I throw the ball, she fetches, and then we strike up a trade. Sometimes we walk with her best doggie friends and my good neighbor, and I get the pleasure of conversation while she spends her time wrestling.

On Tuesday afternoons, some Friday evening, and, now that cancer has added to my daily burdens, sometimes Monday mornings too, I spend an hour listening and caring while a trusted co-counselor works through whatever mental and emotional challenges claim his or her attention. In turn, he or she spends an hour doing the same for me.

For the next eleven weeks, I will go to the hospital every Friday afternoon for chemotherapy. For five weeks after that, I'll go five days a week for radiation.

I check my email nightly before bed. I check it again in the morning. When I occasionally wake up restless, I check it in the middle of the night.

Where am I going with this? I guess I'm just noticing and appreciating rituals. There are some that we choose, some that choose us, some that run their course and move out of our lives. Some that we lean on heavily in our hours of need. Some that become richer for their repetition, some that steal richness from us and that we strive consciously to abandon.

What are the rituals in your life, newly adopted or longstanding, treasured or not?

Sunday, March 06, 2011

Vlogging from the Couch

Sometimes you don't have to dig very deep to find the underbelly of the beast. I think somewhere in here I mention that cancer sucks. That about sums it up.

Friday, March 04, 2011

Five Down

My jam session didn't last long, but it felt good to try.

The worst part of the new chemo, so far anyway, is not so much the Taxol but the intravenous Benadryl and Decadron. The former knocked me out for the entire day, and it hurt going in, ached all the way up my arm. The latter has me worried that I won't sleep tonight. Both were given to ward off allergic reactions. None were forthcoming.

But this is nothing compared to what I felt with the last drugs. It's probably way too soon to be making any comparisons, so I will stop right there and turn my attention elsewhere.

In honor of the fact that I managed to pick up the guitar tonight, I'll use this space to inform you that my first and only album (so far?) Original Sins is finally available for download from CD Baby for $9.99. You can listen to snippets of the music and download a few of the tracks individually there too. The whole package coming soon to iTunes too. I'll let you know when that comes through.

"Ethereal voice, soulful grooves, emotionally potent acoustic originalia to change your life to."

ps. The needle went in on the first try today.

Thursday, March 03, 2011

The Illusion of Confusion

You know the scenario. A loved one is struggling and comes to you to talk. You catch a glimpse of a vulnerable heart and your own heart surges forth to meet theirs. All you want to do is help. It's stressful.

At least it is when this happens to me. My chest tightens. I want so much to provide a thread of hope, nuggets of wisdom, and black and white crystal clarity. I strive to confidently and capably save the day.

More often than not, however, as I hone in on the issue at hand, the person I am attempting to rescue recedes into themselves, wrapping that vulnerable heart in layers of their usual coping facade, obscuring the kernel of their pain. Even when they tell me my advice is spot on, or the information and resources I am providing are useful, somehow I rarely feel I've given them what they need most of all.

On the flip side, when I am the one asking for support, I am often frustrated by well-meaning attempts to help. I feel compassion for my well meaning would-be helpers. I don't know what I want from them either.

Recently, I have been sharing my worries about not having a port catheter, a surgically implanted device that makes the infusion of chemotherapy an easier task. There are risks to getting a port, including serious infection, and two surgeries to endure: one to put it in, one to take it out. Though my doctor has been adamant that I shouldn't have one unless it's needed, I have wondered if ultimately I will regret not pushing for it. When I admit my worries about painful failed needle sticks almost everyone tells me, "Get the port." And here's where the frustration hits.

I recorded a vlog about it. It's kind of raw. I didn't think I'd post it. But in the process of making this video I unwrapped my own vulnerable heart, found the kernel of my own pain, and came to a conclusion that feels right for me. And in so doing, I was reminded that, given the opportunity to explore our own minds and hearts, we find our own threads of hope, nuggets of wisdom, and black and white crystal clarity. We'll expose and melt the offending fear or shame or grief and our own clear thinking will be restored.

And so, a new resolution: In the future, when someone approaches me for support and I feel that familiar tightening in my chest, I plan to take a few deep breaths, relax my neck and shoulders, and remind myself not to buy into the illusion of confusion. I will make it my primary objective simply to listen, to trust and validate the mind of my struggling loved one. Because ultimately, we are all uniquely qualified to solve our own problems.

But it helps to have cheerleaders.

And I will cheer with all my heart.