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.

Giving it Away

Still catching up, but this is the most recent one. More of my videos here.

I did it! I've been postponing writing the first edition of the Spark*Letter newsletter for, I don't know, let's just say a very long time. And I'm so excited that I finally broke through my resistance that I've included an offer of a free token of appreciation for my first-at-bat subscribers, an actual care package to arrive on your doorsteps (or whatever doorsteps or PO boxes you direct me to) which will include a sample pack of my inspirational art postcards plus a one-of-a-kind hand-made thank you card for each person.

Me, my niece and nephew, and a tiger. We are fearless.

Why am I teasing you with this information? Because it's not too late—I haven't actually mailed the newsletter out yet! (Sign up on this page - the link is at the top right.)

Maybe some day my list will be so big I won't be able to offer such a personalized prize, but for now the offer stands.

Or maybe I'll keep it up. Maybe the next issue will include bigger gifts. Maybe someday I'll be Oprah and Santa Claus combined, handing out cars and televisions and iPhones.

Okay, to be fair, it's not my goal to buy your love and loyalty, and we don't really need more stuff, do we? I'm just a kid with a bouquet of wilting dandelions. But what could be more precious? I'm offering my heart. And the more I give away, the richer I feel, and the more inspired I am to make something new.

Wow. I just had a vision of a weekly routine that includes a couple of hours writing and making thank you notes. How awesome would that be, to have so much to be thankful for?

It doesn't seem so far-fetched, come to think of it.

There's always more dandelions.

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

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.

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...

Winning

This weekend was amazing. In spite of today's sonohysterogram looming on the horizon. In spite of the possibility of endometrial cancer, of being told I need a hysterectomy. In spite of being home alone while Jim was away from Friday to Sunday visiting his son in college for parent's weekend. In spite of the disconcerting ache in my uterus, something I've been feeling, come to think of it, for months now. In spite of the questionable blood test, not to be retested for another two weeks, indicating the possibility that all is not right within.

So how is it possible that this weekend was amazing? That I felt mostly calm and good and happy to be alive? I think because I got to be around a bunch of people on Saturday who know how to listen and allow emotion. Because I got to talk to Jim on the phone and enjoy his company as I wound down my evenings. Because on Sunday, I got to celebrate this gorgeous season on a 63-mile bike ride with old and new friends.

Cancer has reenforced for me the reality that, whatever happens in the short-term, the long-term truth remains the same for all of us: our days are limited. Cruelly and tragically and severely limited. When you really grasp that reality, the quibbling over how many days we each are allotted becomes less important. Life is now. And mine is good.

So let's get on with it.

Speaking of which, today's test was uncomfortable, but only mildly so, and quick, less than 10 minutes. And best of all, there was no evidence of cancer, not even a polyp requiring surgical intervention. The thickening that was seen on the original ultrasound is actually taking place underneath the uterine lining and is considered to be "normal cystic changes due to Tamoxifen."

I've been given the green light to keep taking the drug, and I probably will, though that achy feeling is still there, and I do have some questions. So I will take a few days off to consider them.

On October 15th, I'll re-do that slightly irregular blood test, and hopefully all will be well there too.

But as far as today is concerned, the score is Amy: 1, Cancer: 0.

To the Perimeter

During those long training hours leading up to my Ironman 70.3, my mind wandered far and wide, cycling through the To Do list, my plans for the evening and weeks to come, the status of my relationships, all the way out to the perimeters of wildest dream and deepest fears. I had moments of confidence that breast cancer was firmly in the past and I will live a long healthy life. And I had moments of dark foreboding in which I worried that as soon as I had the triathlon behind me and faced the upcoming round of cancer-related checkups, I would be thrown back into fighting for my life.

Right now I don't know what I'm up against, but I do know the coast is not clear. The first red flag came in the form of slightly out of whack blood test result. I got a call from the oncology nurse following my every-three-month check-up saying "Nothing to worry about" but I should re-test in six (now four) weeks.

The second red flag came yesterday.

Because I take Tamoxifen, I see a gynecologist every six months for an ultrasound of my uterus. This drug makes a bigger difference to my survival chances after breast cancer than chemo and radiation combined. Unfortunately, it can also cause endometrial cancer. (FYI: The endometrium is the lining to the uterus.) Mine, as it turns out, is quite a bit thicker than it was six months ago. "Probably polyps," says the doctor, which will require surgery, but nothing compared to the hysterectomy I'd be facing if it turns out to be cancer.

On Monday I'll undergo a sonohysterogram, which is like a souped up ultrasound in which they squirt saline solution up into the uterus through the cervix. I've had one before, back in the miscarriage days. It's a crampy, uncomfortable affair, and like all such through-the-cervix things, reminiscent of an abortion procedure, a traumatic association for me.

But I will be glad to have more information.

At least I hope I will be glad.

Milestones

The invention of a new word (flabbergaseous), cancer treatment milestones, and Millie the recording artist. More of my videos here.

Updates and Poodle Attacks

My Dad and Millie. A deep and abiding love. More of my videos here.

Tamoxifen update: I'm getting used to it. The hot flashes are subsiding, my muscles aren't so knotted up, I sleep okay most nights, and I'm not feeling emotionally underwater anymore. I'm about 9 months in. Four year, three months to go.

Triathlon update: I signed up for an Olympic distance event, holding off on the Half-Ironman until I'm really sure it's something I want to do. In the meantime, I'm training almost as if I'm still planning on it, biking, swimming, running, each three times a week.

Stepmotherhood update: The boy I met at eleven and whom I've shared a home with for most of his life ever since is now eighteen. Come fall, he'll be off to college and planting the seeds of his own adult and independent life. I know it's the biggest cliche in the book, but how quickly they grow up. In the meantime, he's a true teenager. On the couch. Sick with mono.

Poodle update: Millie is keeping an eye on him.

Lymphedema update: Still there, still mild. I wear the compression sleeve occasionally, and think about it less.

Pet Oppression, Among Other Injustices

For today's installment: begging poodle, determined cat, neat brother, good friend, a funeral, Tamoxifen, refrigerator drama, and a haircut. All of those words apply. More of my videos here.

Tarzan

The black and white TV fiction that occupied great swaths of my childhood Saturday mornings remains in my memory in repetitive snippets: Tarzan's distinctive yodel; his bare, hairless chest and skimpy animal skins (I liked imagining the steamy heat that made such a uniform practical); the housewifely Jane's good-natured fussing in the tree house (which I found both comforting and disturbing); and the thrilling race through the jungle that took place in every episode, Tarzan valiantly swinging from vine to vine above the jungle floor on his way to rescue Boy from a crocodile, or a lion and cubs from money-hungry poachers.

It is hard to remember what was so compelling about these stories. But they kept me pinned in place, gripping my bowl of Cheerios, wearing my footie pajamas, slack-jawed and anxious to see what would happen next.

Recently I've been comparing myself to Tarzan. Not that I've been valiant or yodeling or even bare-chested. It's just that lately I've been swinging from distraction to distraction, unable to bear the company of my own mind. Every now and then I let go and fall into despair. It feels ancient, primordial, like warm oozing mud threatening to swallow me whole.

Looking back over my blog posts, I see this state of mind has prevailed for months now. I would not be surprised if Tamoxifen has some role in it. I would so like to throw those pills in the trash and walk away. While I'm at it, I'd also like to quit this every-three-month once-over by my oncologist, divorcing myself from my history of cancer entirely. But I'm not that brave/stupid, and in spite of these muddy feelings, I still prefer to live.

Last week I began training for a half-ironman triathlon - a 1.2 mile swim, 56 mile bike ride, and 13 mile run, all in a row. I think I could do it. But do I really want to? It feels like I've been pushing myself into it without ever truly answering that question.

When I'm really honest with myself, I realize that this project feels like just another set of ropes over the abyss. I'm afraid to let go. Yet when I've allowed myself to feel the feelings, the urgent need to avoid the muck below has abated.

On the other hand, I'm also afraid of the challenge the half-iron presents.

So now I'm Tarzan inside a fear sandwich.

I guess I'll just hang out here, without footie pajamas or Cheerios this time, and see what happens next.

Shifting

More of my videos here.

It feels lately like the ground keeps slipping out from under me. I'll be going along, minding my own business, and find myself suddenly or subtly sliding into sadness, or confusion, even a mild form of panic. Along with this comes insomnia, an inability to focus on work, and the same recursive thinking leading me to the same dead-end in the corn maze of my mind: whatever I'm doing is utterly wrong. If I'm making art, I should be writing, if I'm writing, I should be cleaning, if I'm cleaning, I should be having fun, if I'm having fun, I should be working. There is no right. My entire life is wrong and I can't bear it another minute.

In my better moments, I reach for the phone, a shoulder to cry on. Otherwise, I reach for something to soothe and distract - food, a movie, or a chore, preferably something I can do while simultaneously eating and watching a movie. And then it passes and I feel absolutely fine and don't see what exactly was so upsetting in the first place.

I'd like to believe this is all good. That this is a temporary crisis that will lead me to higher ground, a greater sense of ease and confidence in the world. I'd like to believe I've simply peeled away a layer of armor and now I'm confronting the stuff I didn't let myself feel in the past, working my way through it.

But sometimes I wonder if it's just the Tamoxifen messing with my hormones, and the aftermath of a year of cancer treatment and feeling like my life was on the line, a feeling that hasn't exactly gone away.

Either way, I'll keep putting one foot in front of the other. I'll keep cooking good meals, making art, writing, working, doing chores, having fun, and wrestling the demons in the corn maze. And I'll keep picking up the phone, reminding myself that I'm not alone.

What else am I going to do?

Tamoxifen and Textiles

Updates on cancer treatment, creativity, poodle meets horse, and more. More of my videos here.

Tamoxifen Noob

Two weeks down, four years, fifty weeks to go.

So far: Mild headaches when I run. Hot flashes, also relatively mild. Moody. But maybe that's me.

More of my videos here.

Dalai Lama Drama

Not his drama, exactly, but ours. Check out this quote, snatched from a friend's Facebook status:

Someone asked the Dalai Lama what surprises him the most. This was his response.

"Man, because he sacrifices his health in order to make money. Then he sacrifices money to recuperate his health. And then he is so anxious about the future that he does not enjoy the present; the result being that he does not live in the the present or the future; he lives as if he is never going to die, and then he dies having never fully lived."

While I'm waxing wise, here's the latest vlog. Maybe a little wisdom in here too...

More of my videos here.

Rosie the Attack Cat

Last radiation treatment! More of my videos here.

I Am

If you're wondering what happens when you get radiation for breast cancer, here's the inside story.

I am:

• Two days into Tamoxifen with naught but a few hot flashes to show for it. 
• Officially invited to be a Youtube partner (which means advertising will be placed with my videos and I might make a few pennies for my efforts).
• Done with radiation! Yahoo!
• Still sore and occasionally tired. But not terribly so.
• Enamored with my seven-year-old niece's amazing alter ego character. You'll be meeting Macho in video soon.
• Beginning a new painting today.
• Playing tennis with my brother tomorrow, if it ever stops raining.
• Taking a friend who just found out she has breast cancer to the doctor on Wednesday.
• Behind on my blogging. (Sorry!)
• Still trying to catch up on a backlog of videos. These are the latest.

I'm proud of this one, a real, full-spectrum make-you-laugh make-you-cry experience here. More of my videos here.

Radiation Hints and Tamoxifen Limbo

More of my videos here.

Radiation Reality

In this video: Getting through radiation; Tamoxifen looms large on the horizon. More of my videos here.