ESPN and Not Giving Up

I'm in the midst of a week of mostly crappy early spring weather. I'm making good use of it. My taxes are done. The basement is organized (something I've been meaning to do for a year). This morning I stood out in the rain and prepared a bed of mushroom spawn and woodchips, my first attempt at growing edible fungi, something I've been wanting to do for decades. And now I'm catching up on many months of loose ends on the computer.

In the process, just now I came across a link to this video broadcasted on ESPN this past winter, one of several which included clips from my video blog. (That's me on the couch, on the bike, in the pool)

I just watched it twice, and burst into tears both times.

It occurred to me that I haven't shared it on this blog, that I've all but abandoned this blog, and my video diary too. There are reasons for this which go beyond shifting priorities and busy schedules, as much as I'd like to think otherwise. I won't try to explain it all now, but I will say that the reality of cancer is not as Hollywood as it appears in the media. It's not all drama, triumph and tragedy, not simply a battle you either win or lose. For many of us, it's more like a rocky road that leaves you battered and scarred and permanently altered in ways that are difficult to describe, or to believe aren't your own fault because you're not thinking positive, not trying hard enough.

And then you keep stumbling over more rocks.

To say the least, it can get hard to keep putting attention on it, let alone drawing attention to it, editing video and writing about it in a public way.

I would like to leave cancer behind. But it's not that simple.

Don't get me wrong, my life is good. I'm basically healthy. There's laughter, and love, deepening friendships and new friendships, challenge and excitement. But there's also the specter of death, the feeling of living a slightly diminished life, thanks to daily pills that oh-so-subtly suppress my life force, while hopefully also suppressing recurrence of disease. It's a difficult trade, but a necessary one.

On the other hand, we all have challenges.

In the famous speech that launched the foundation in his name and the ESPN video series that prompted this post, Jimmy Valvano said "Don't give up. Don't ever give up."

Of course not.

My road may be rocky, but I still hope it's long.

Spring Cleaning

The last of my out-dated footage, from last summer. More of my videos here.

I love spring cleaning. There is nothing more hopeful than clearing the decks, sweeping out the clutter, knocking items off the "To Do" list. Jim and I have a weekly practice now. We made a list of all the things we've been intending to take care of——repairs around the house, financial reckonings, projects of all stripes. Every Monday evening we sit together and look at the list. We add and subtract, then pick a few of the most pressing items to tackle in the coming week, addressing the hows and whens and who-does-whats.

This weekend we'll deep-clean one room in the house together. We'll order wood for next winter. We'll wash and trim our dog's overgrown fur.

I'm becoming increasingly judicious about new projects.

For instance, I'm resisting the urge to replace the oft-used staple foods in our pantry, opting instead to make creative use of all those items I continually push to the back of the shelf.

Ultimately, the goal is to get to a point where there is no backlog, where there's room to take on new, bigger, more interesting and important challenges, without the energy-drain of worry over all the fraying loose-ends in the background.

I'm also thinking a lot about the world outside my little bubble——like climate change and how we privileged few humans are running roughshod over the earth, its creatures, and more vulnerable people, all the exploitation of land and people that support our "American way of life." I want to be done feeling bad about myself because I feel so powerless to affect change. And so, as I work, I am also educating myself, thinking about how to engage politically, something I've avoided until now.

Life is an adventure. And it's short. Will you join me in getting your chores done so that we can take on the bigger challenges together?

Here's a great talk by Naomi Klein that has gotten me going on this path. If you watch it, I'd love to know what you think.

Strange Days Indeed

More of my videos here.

I'm getting back in the saddle, making videos again, writing on the blog. I just uploaded another belated video from this summer, but I never shared its predecessor here, so I'm posting that one first.

My office this afternoon is a hospital waiting room. I'm passing the time while my husband undergoes minor surgery. His surgeon, who comes highly recommended, was the doctor who diagnosed me with breast cancer three years ago. It wasn't until after after the biopsy, after his diagnosis—which was delivered over the phone at my request—, at my second office visit, when I requested that he show me where my lymph nodes were because I kept worrying something was wrong there even though he'd said otherwise, that he found the lump there too.

I will never forget the look on his face in that moment.

I haven't spoken to him since I left his office that day.

Both Jim and I felt a little tension about how he might react when he saw me today, sitting at Jim's side pre-op. Jim actually considered asking me to stay away, so as not to add stress to his surgical experience, but I reassured him that I would follow the doctor's lead, that I would be pleasant, and he decided it would be okay.

"Nice to meet you," the doctor said, shaking my hand with a perfunctory smile, turning his attention to the man of the hour.

Apparently he didn't recognize me at all. Or else he was being discreet.

Just now he called my cell to tell me the surgery is done and that it went very well.

What a strange thing, hearing this man's voice in my ear as I'd heard it once before, delivering good news instead of bad.

As I said before, life goes on.

Reflection

Millie

I sent a version of the following as an email to my family last night, explaining why I've been a bit out of touch. It's not the whole story, but it may shed some light on why I've been out of touch with you all as well. Please don't judge me too harshly.

Hello family, 

Dad called me after the holidays saying, "You're not answering your emails. What's wrong?" 

I was a bit defensive, admitting finally that I was maybe a little depressed, but it was true, I wasn't participating in the family chatter. It wasn't until after I got off the phone that I realized there was something behind that depression and that it hadn't occurred to me to tell any of you, or indeed, to admit to myself. 

And then it just seemed really sad to me that I went through the holidays burying this awareness. 

And then I realized I do this all the time, which seemed even sadder. 

So, in an attempt to break my habit and to have you all a bit closer, I want to tell you two things—first the thing that was bothering me then, and also the thing that is bothering me now.

Then: 

Because of Tamoxifen, the drug I take for breast cancer, I am at increased risk of endometrial cancer (cancer of the uterine lining). It's a numbers game and the odds are better that it will help me, so I'll likely be on this drug for ten years. In the two years I've been on it so far, my endometrial lining has gotten very thick, and I've had three endometrial cancer scares. They've done ultrasounds and sonohysterograms (a more invasive ultrasound) and finally, this time, most invasively of all, an endometrial biopsy. 

I wasn't as worried about the risk of cancer this time around, which everyone thought was small, as I was troubled by the biopsy itself. The procedure has similarities to an abortion, which is connected to traumatic memories for me, as well as the fact that I never got to have children. Over the holidays I was anticipating that experience but trying not to think about it either, and then waiting on biopsy results, which in spite of not worrying, got me worrying. Luckily the biopsy was negative. 

Tamoxifen is hard on me in other ways as well. After ten years, there'll be another drug and its side effects to contend with too. I won't get into details now, but suffice it to say, it can be depressing. Anyone you know who has breast cancer seemingly in their past - just know that it's never really over. I know I'm not the only "survivor" who feels like I shouldn't complain, like we're supposed to feel lucky because there are life-saving treatments available to us now that didn't exist before. I do have a lot of appreciation but that doesn't take away what's hard, or the worry about what will happen, in my uterus and otherwise, in the next eight years.

Now:

The new thing bothering me is very different, but I've been crying about it all week, ashamed, and embarrassed and, I don't know, just feeling heartbroken and terrible. Here's what happened: 

I was trimming the fur around my dog Millie's mouth. I have been grooming her every couple months for four years now without major mishap, but this time, I messed up. She tried to lick the scissors, which I had recently sharpened, and before I knew what was happening, I had sliced into her tongue. There was a lot of blood for about an hour but nothing the vet could do about it. 

She's doing fine, fully healed already, not in pain or having any trouble at all, and yet, writing this out, I'm crying all over again. The split in her tongue remains and will remain forever. Every time I see it, I feel rotten. 

When I called the vet I was in tears. The woman I spoke to told me she had a similar accident with a dog she had years ago and she, too, felt terrible. 

"Did you ever stop feeling terrible?" I asked. 

"No," she admitted. "I feel kind of terrible right now." For a moment, we laughed and I cried some more and we felt terrible together.

On the bright side, life goes on.

A belated thank you for all the holiday cheer and thoughtful gifts.

love

Amy

Beach Report

Medical drama and family fun in this one. More videos here.

Last Friday, on a whim, I packed up and took myself for a day at the Rhode Island shore. It was just what I needed, both a reminder that my beloved ocean isn't so terribly far from home, and an affirmation that there is pleasure in my own company (how nice to not have to hurry from the car to the beach, for instance, because taking my time gathering my things was holding someone up).

I'm a bit behind on posting videos, but cranking along with writing. My manuscript is now over three hundred pages. I feel the weight of all those words. It's harder to write lately, perhaps because I'm just coming to the crux of the story.

It is my hope that I'll be able to get to the end of this draft by the end of the first week of September. And then I'll return to the beach for a couple of days, this time with Jim. Because I like his company too.

Spoiler Alert

(From this spring. Uploaded the sequel to this one today. More of my videos here.)

I'm closing in on page three hundred of the first draft of what I hope one day will be the Babies or Not book. Once I'm finished—I figure I've got fifty or so more pages to write—I'll print the whole thing out and sit with it some place comfortable. In the warm sun I hope, maybe in a meadow or perhaps on a beach if I can finagle that, or else on the couch or sitting up in bed. In any case, I'll have a good red pen and some snacks and a notepad at my side.

I imagine I'll have some new writing to incorporate into the second draft, and a lot of older writing to strip away or wrangle into something more tightly honed. Eventually, I'll have a completed manuscript, the story of my journey through the reproductive years, which turned out very differently than I ever expected it would.

Early on in writing this, I began to imagine pitching the book to an agent or an editor, saying, "It's the story of an infertile abortion counselor's urgent but ambivalent desire to have children."

This imaginary conversation spawned a worry. What would I say if the editor or agent asks, "How does it end?" At first I drew a blank. So I asked myself, How does it end?

The answer came without a moment's hesitation. It's not exactly a fairy tale, but it's close enough for me:

"She gets cancer and lives happily ever after."

I hope the world wants this book, but if not, I'll be okay. I'll live my way into the next story.

Taking it On

More of my videos here.

With all the digestive difficulties I had before I understood that by staying away from gluten and dairy products all would be fine—I have been dreading colonoscopies for a long time. Sorry to be so blunt here but there's little that feels quite so scary and vulnerable as turning over control of what comes out of and goes into that particular orifice.

Thanks to my history of breast cancer, I'm told I'm at increased risk for colon cancer. My oncologist told me to get a colonoscopy now. Don't wait, like most people, until I'm fifty. I put it off for an entire year. But now, forgive the pun, my first colonoscopy is behind me. I did it without anesthesia. And for me anyway, it was no big deal. One less thing to be afraid of in life. Actually, make that two. I don't have colon cancer.

I did this video a while back, but have been busy working on my book (I'm about 185 pages into the first draft now) so it took a while to put together its sequel. That one is uploading today. You will be able to see it here soon.

Full Disclosure

I'm in the process of loading my latest video to YouTube, number #150!
But I haven't yet shared with you #149!
So here it is!
More of my videos here.

I haven't spoken up about this yet, here or otherwise. I wanted you to be the first to know: I'm finally writing the book, the Babies or Not memoir which this blog was originally intended to foster, all about working as an abortion counselor while struggling with infertility and the story that brought me to that place in my life and then beyond that place. It's about how "Babies or not?" the question became "Babies or not..." the resolution to live a full, brave, brazen life, regardless of cancer and marital upheaval and how parenting fits (or doesn't fit) into the picture.

I write every day, have been for a month or two now. I'm about seventy pages in and going strong. (I'm aiming for around 250 pages for the finished manuscript), and it feels like the most important, right work I've done. I look forward to sharing more with you about this - but for now - back to work!

Big Decisions

#142, My latest on Youtube:
Poodle Knows Best

There's an energy in this week's work that reminds me of spring cleaning. Except the only thing I'm cleaning up is the clutter in my mind, on my To Do list, and on my desk. I've posted a new video diary, a new Salad Diary, and now a new post here. I just wrapped up a website update project for a client, a logo design for another. I'm doing my taxes. I'm paying my bills. I'm working through my inboxes, both paper and email.

My goal is to pull myself up out of the deluge of rote tasks to a point where I can press pause with confidence, knowing there is nothing crucial hanging out in the wind. And then I'm going to take a day for myself. I'll go for a swim. I'll go for a long walk in the woods. Millie will come along for that, romping through patches of wet snow, sniffing clumps of rotting leaves, tugging at my pant leg and nosing at my coat pocket for treats and tennis balls. Eventually she'll run off after a sound or a scent, and I will be free to breathe, to think, to notice that I am alive and not inextricably tied to a keyboard and a screen.

And then I'll take myself out to lunch, some place comfortable, some place with excellent herbal tea, where I'll sit for a long while with a journal and a pen.

And then I'm going to make some big decisions about what comes next.

I'll keep you posted.

Catching Up, Letting Go, Getting Clear

#142, My latest on Youtube:
The Grand Canyon, Lymphedema, and Marathon Men

Have you ever had a moment in your life when you see your path as if from above, recognizing the patterns repeating, the contours of the landscape you've traveled over and over in recursive circles? Off in the distance, you can make out the little one you once were and how alone in the world you felt way back then, how powerless. You can see the choices you made based on the assumption that you would be on your own, in a certain way, forever. But you feel in your bones how things are different now, how you can put down the recursive circling, the coping mechanisms, the masks, the chalkline limits you once accepted as absolutes. But now you have power. You can ask for help. You can rescue yourself. You can slow down.

For several years now I've had pain in my lower back and hips that I have been trying, alternately, to manage and to ignore. Perhaps in an attempt to avoid hassel and disappointment, I've been reluctant to seek help. But recently I have been taking it on. This recent x-ray of me, presumably standing perfectly straight, shows how misaligned my hips are, which at least partially explains why I'm in pain.

You can slow down.

This is happening to me lately, and it is intense, emotional, and deeply good.

If you haven't had a moment like this, know that it is possible. You must dig in and you must move toward it with purpose. But it is a gentle purposefulness.

Like an anthropologist, you excavate. Like an investigator, one by one, you connect the dots.  Like climbing a mountain, you put one foot in front of the other until the vista opens up before you.

You do it in therapy, you do it in conversation, you do it on your bicycle, on the yoga mat, in your journal, on the canvas. You do it by sitting still. You do it by refusing to rush. You do it by resisting abandoning yourself when you are uncomfortable, even if for only a single minute longer than you thought you could before. You do it by breathing. You do it by taking radically good care of yourself.

Escape to NYC

Enjoy!

More of my videos here.

Shifting

The bright side. More of my videos here.

I haven't been much of a blogger lately. I haven't been writing. I haven't been posting news of my latest videos, at least not promptly. And lately, I'm not even making as many videos.

So what's going on?

Simply put, my energy is shifting.

I plan to fill you in, but in the meantime, I plan to catch you up. We'll start with this video - hope you enjoy.

Holiday Cheese Eating

Forgive me. I'm a little behind in letting you know this video is live.
I plead the flu. More of my videos here.

Bombshell

I received an email yesterday inviting me to participate in a discussion on HuffPost Live with Suzanne Somers regarding her new book, Bombshell. I was eager to accept, but unfortunately, didn't receive the email in time and missed my chance.

In case you don't know about her, Somers' books live on the controversial fringe of medicine. She touts a mixture of medical truths and dangerous myths, suggesting that if we just eat right, take the right supplements, and use the right cleaning products in our homes, cancer, and indeed aging itself, can be overcome or better yet, completely avoided. 

When I was diagnosed with cancer, friends confessed to me that they were scared not only because they cared for and worried about me, but also because they regarded me as a model of healthy living. Nobody wants to think that you could do everything "right" and still get cancer. It is by far more preferable, indeed downright seductive, to believe that we have some control when it comes to avoiding the spectre of disease. 

Rationally, it does make sense to treat our bodies well. It puts us in the best possible position to bounce back if disaster strikes. But the flip side of the reassurance of the illusion of control is the cruelty of blame. The truth is, disaster can strike anyone, at any time. Even if you're very very good. And sometimes bouncing back is not possible.  Even if you fight very hard.

I'm suspicious of pills. I cure my headaches with a good cry, or a big glass of water and a nap. And if that fails, I suffer and complain and annoy everyone around me unti the pain subsides. As I'm sure you can imagine, chemotherapy terrified me. I regarded cancer drugs as crude poisons, a carpet bombing approach with my body as a battlefield. I wanted to nurture my body's natural immunities. I wanted a friendlier, more nuanced approach, and I plowed into research. I was excited by what I read about the power of every day foods and spices. Green tea. Curcumin. Black pepper. Mustard greens. I found Somers' message to be very hopeful and attractive. But the deeper I dug the more disappointed I became.

There may be something in green tea and black pepper and curcumin that can cure cancer, but the research simply isn't there. Nor is it there for many of the "designer supplements" Suzanne Somers espouses, let alone the miracle cures you'll happen upon on Googling alternative therapies. I read one about melting tumors in a single day by alternating seven-minute hot and cold showers directed on the tumor site) and crazy diets (one that sticks in my memory involved a lot of cottage cheese). It isn't to say that all that is "alternative" is bad, or that the science is always absent. It's just that rigorous study is expensive, and drug companies don't put money into something that can't one day turn a profit. You can't patent "eat more vegetables." And besides all that, you can't ethically withhold a drug that has proven results in favor of experimentally trying something that does not.

Here's where it gets dangerous. Somers had breast cancer. She had a lumpectomy and radiation but refused chemotherapy, and she claims that chemotherapy "rarely works." Perhaps that is true for her particular cancer. For many women with cancer confined to the breast, chemotherapy isn't even recommended in the first place, the benefit is marginal at best. I don't know the details of her diagnosis but I do know that mine was more advanced. It was in my lymph nodes. It was all over my right breast. It was the most aggressive of its type. Chemotherapy was emphatically recommended. But even so, if a hundred women with my same profile and exact diagnosis refused chemo, a few would have survived without recurrence. Why? I'm sure every one of them would have an answer. Prayer. Meditation. Broccoli. Luck. And every one of them would be convinced of their cure. But it would be dangerous to evangelize to others about their approach. Without peer-reviewed, double-blind, rigorous study, it's downright irresponsible.

Pushing for research, and a health care system not driven by profit, however, is another story entirely. 

Falling Behind

Been sick the last couple weeks (nothing serious, just that darn chest cold thing that's going around). Holiday updates are on the way, but in the meantime, there's this... More of my videos here.

Thanks Be

With no cancer check-ups on the horizon until January and no major athletic challenges until February (more on that later), I am enjoying this opportunity to take care of body, complete work projects, and overhaul my house from the ground up. Literally. Just last night I went on a rampage cleaning the basement, a chore that has been on my list for months. It felt great to finally feel inspired to get to it. So great, in fact, that I started thinking about scraping and re-finishing the upstairs bathroom ceiling. I've been watching the popcorn ceiling paint come down in flakes and chunks for years and not until now has the task seemed within my reach.

Life is good!

Brainwashed

My latest video diary - it's a naughty one.

You can download the music from this video
for free: "Requiem for a Fish"
by The Freak Fandango Orchestra
is licensed under a Creative Commons
Attribution-ShareAlike License.

I got out of bed this morning and before I made it across the bedroom floor and into the bathroom I was already thinking that I am too fat. I bring this up not because it's an extraordinary occurrence but because it happens nearly every morning. Even at forty-two years old. Even after cancer and a mastectomy and third place in a half-ironman.

The thought did not upset or derail me any more than a mundane grumble about the weather. It's just a familiar refrain, a background track to my morning routine, like wallpaper that I gaze at daily and never really see.

But for some reason this morning I did see.

You know how they say men think about sex every six minutes? Well I think it's a good bet women worry about the attractiveness of our bodies in about equal measure. I am absolutely sure I am not alone in this. It's obvious - just look at us! The lengths that many of us go to with hair and makeup and diet and exercise, or, for some of us, the lengths we go to to avoid noticing we have bodies at all. But we're constantly measuring our bodies against the women around us, women in movies, and, worst of all, airbrushed Scandinavian teenagers on billboards and in fashion magazines.

Yet we don't admit the full extent of the obsession, not even to ourselves much of the time because either we're so used to it that it doesn't occur to us that it could be different or we're ashamed that we're at all insecure about our attractiveness, or both.

I mean, we are intelligent beings with far more important and interesting things to tackle with our brilliant minds, aren't we? It follows that we might wonder if the fact that we are occupied with hating our thighs instead of, say, ending global poverty or taking charge of the environmental crisis means we are not so smart after all.

But then again, we were brilliant children too, and we understood at a very early age that thinner bodies are more highly valued in our society, especially if those bodies are fair-skinned, blonde, and blue-eyed. We got it that as we grew into adulthood the ease with which we might hold a spotlight in the biggest and even smallest arenas would be tied in the overwhelming majority of cases to whether or not we were considered desirable.

It's sexism, people, and we've internalized it.

In other words, we have been unintentionally brainwashed.

It's time to reclaim our minds and free our bodies from the scrutiny. We are beautiful, incredible beings. Let's treat ourselves accordingly.

Sandy!

You can download the music from this videofor free: 

"Presenterator" by Kevin MacLeod

is licensed under a Creative Commons Attribution License.

No power at my house. I'm enjoying the enforced break from the computer screen. Today's big chore: rescue twenty gallons of blueberries from the freezer.

But I didn't want to leave you hanging. This video has the test results from my recent cancer scare. It also has rainbows, snakes, and toads.

Spoiler alert: all is well.

Fifteen Minutes of Fame

Download the music from this video for free:

Cafe Connection by morgantj

is licensed under a Creative Commons license

I had a taste of fame on Wednesday of this past week when a producer from the Huffington Post contacted asking if I'd be a guest on a segment of HuffPost Live, which I did that very day. A couple of hours before the live broadcast, a famous Youtuber (Collette Butler aka Katilette) released a video in which she talked about me and this blog in the sweetest, most heartfelt way. As soon as that video went live, the messages and subscriptions to my Youtube channel surged, each generating an automated email to my inbox. Jim and I stood transfixed in front of my computer feeling overwhelmed in the best possible way as we watched the emails pile up, a new one appearing every few seconds.

And somehow, between all the autographs and paparazzi and the face licking (oh wait, that was Millie) I've managed to put together my weekly video. Now that's dedication! ;) Hope you like...

Cheater

Dear readers, I have a confession to make. I've been cheating on you with another blog. I don't mean Life Craft, my long-time art blog. I've been open about that relationship, and to be honest, I've been neglecting it. Not my video-blog on Youtube, which I have been sharing here as well. (Have you seen the Ironman 70.3 video yet, by the way? There's a suprise ending.)

From the Salad Diaries: Barbequed Tempeh Salad

The truth is I have a brand new blog. I'm not sure why I haven't mentioned it, but today I'm coming clean.

Once a week for a month now I've been sneaking over to SaladDiaries.com and posting recipes and healthy tips and a big bowl of something crunchy and colorful and fresh - mostly vegan but not strictly so, and gluten-free.

It's my readers here who encouraged me to take my food passion and knowledge more seriously. So I'm sharing as I go along, working one dish at a time toward an actual in-your-hands cookbook. Let me know what you think!

Want to give someone you love a healthy, memorable treat?
This might be just the ticket! Only $3.50. Available here.

While I'm at it, I should also confess that I'm revamping my home-base website to better share my artwork and all that I'm doing online and otherwise. There's a gift shop there, and if you're really amped up about salads (like I am) you can get one of my designer gift certificates to give a friend, good for one "huge salad with your favorite dressing."

Okay. I feel better now.