As always, all thoughts and opinions are entirely my own.
I had braces as a kid, and it wasn’t pretty. As if being twelve wasn’t awkward enough, I had braces for years, and they came with headgear.
My dad used to joke about using me to improve the TV’s reception.
Up until the point my braces were installed, I was flourishing as a novice clarinetist. I was in fifth grade, but had worked my way up to second chair in the sixth grade band. Then  after my braces were installed, the orthodontist told my mom I would have to stop playing the clarinet. I was not happy.
To make things worse, all those wires and brackets ripped the insides of my cheeks to shreds, and the headgear gave me tear-inducing headaches. (more…)
The other day I had a rare moment of solitude after I dropped my husband off at the office, and drove back home All By Myself. I took the long way, the scenic route along the length of Lake Washington. As I drove, with the water and sun to my left, and mansions to my right, I pondered the week ahead and how I would spend the luxury of down time that would accompany the recovery from my upcoming surgery.
I would get caught up on my correspondence, do my taxes, get a number of blog posts prepared in advance, organize our finances, get started writing a series I’ve been plotting, edit a few thousand photographs, work my way through a stack of books I’ve been longing to read…
My head was racing as I pondered all the projects I’d finally have a chance to tackle, when I saw a big fat bald eagle sitting on a tree branch along the side of the road. I had to drive quite a ways ahead to find a place to park the car, then grabbed my camera and walked back to his tree. He sat there waiting, and watching me walk between the lake and the road. He waited and watched till I pulled my camera up to my face, then took off before my first click. Three clicks of the camera and he was gone.
But the stop was good for me.
It slowed me down.
I meandered back to the car. I stopped to watch birds play. I kicked a rock around for a while. I sat down and studied moss growing out the side of a stone wall.
It’s been three weeks since that drive, and nearly 3 weeks since my surgery. In that time, I have not done one of the things on my list. I rested. I watched a lot of movies. I colored in coloring books with my daughter. I snuggled. I let more than 2000 additional emails accumulate in my inbox. But, it’s all ok. I needed a rest.
Maybe, one of these days, I will get caught up on my correspondence, but it wont be today. Today, I’m going to snuggle on the couch with my little girl and watch Tinkerbell, and maybe we’ll sing some songs, and make up a few stories.
“Just breathe,” I thought, as I sat up all night, listening to the ragged breaths growling and gasping in and out of my feverish little girl. I had plenty of time to contemplate how the most intimate, profound, and intense moments of my life have centered around breath.
I was young when I learned that people could die in their sleep, about 5, I think. I would sneak out of bed in the middle of the night to do bed checks, making sure my family was safe and well. The snorers were easy. I could listen for my parents’ snoring from my bed. My grandfather snored, too, but not Grandma. I’d watch her low profile for signs of movement, but I had to be stealthy; she was a light sleeper, and still had mothers’ ears. I’d check on each of my brothers, as well, before I could let myself settle down, and go back to sleep.
When I got older, and couldn’t sleep, I’d sync my breathing with that of my parents’ snoring. It worked better than warm milk for sending me off to dreamland. Something about that snore meant “situation normal,” and the cadence was hypnotic and soothing.
Sometimes, I find myself in situations where I hold my breath. My large family stood around my brother’s bed in the ICU, each of us reaching out to touch him; a hand, a leg, I held him near his left elbow. The doctor turned off the life support, and I held my breath, hoping for a miracle. I held my breath for so long, but he was gone.
A few years later, in another ICU of another hospital, I held my breath as my mother was extubated after weeks on a ventilator. This time, it worked. It wasn’t easy, but she took a breath, and then another. Eventually, she made eye contact, and squeezed back with the hand I was holding. And soon, she was back to her old, talkative self.
I exhaled when my husband said, “I do.”
I held my breath through the frequent, and impossibly long pauses in my father’s breathing during his last weeks.
My breath gets away from me during a panic attack; I often hold my breath when I’m hopeful, and I use my breath to blow away eyelashes, and blow out candles to make a wish. Exercise, excitement, engagement, even lovemaking are all tied up in breath. Breath is life.
“Breathe,” my husband coaxed, as he counted through my contractions.
“Breathe,” I silently willed the air in and out of my newborn’s body.
“Breathe,” I commanded an empty room, wishing I could send my strength to my husband, who was in the midst of a medical crisis in Istanbul. “We can deal with anything else, as long as you keep breathing.”
I think of my newborn niece, just 3 weeks old, and she’s spent most of that time connected to machines that help her breathe, or breathe for her. Each time I pray for her to breathe, I imagine her mama has prayed a thousand times more. And she is improving, needing less and less assistance each day. Enough equipment has been removed now for her to cry – how beautiful is the sound of a baby’s cry? Especially after this.
Our breath is completely tied up in crying. And laughing.
I’ve experienced joy so overwhelming that I momentarily forgot to breathe. I’ve experienced pain so intense the entire world disappeared. There was nothing left but me, and the pain, and my breath. The slightest movement had to be orchestrated; rest on inhale, exert on exhale. Each breath is painful, yet each breath is progress.
Sometimes all we have left is our breath. Sometimes breath is all we need. One more breath, to take us to one more moment. Inhale. Exhale. Repeat. A slow, quiet meditation on now, until our strength returns, or a renewed hope, even if just to get through another day, and we’re able to slowly start incorporating the rest of the world back into our reality.
If the only thing left to do is breathe, then breathe.
As long as you have breath, you have this moment.
P.S. The little angel is feeling much better, and had more energy than me today. As usual.
There is a certain coziness to autumn. After the chaos of summer, it’s the time when we settle back into routine; we find a rhythm. It is the time of comfort food, of warm colors, and crisp breezes. It is the season of pumpkin pie.
Once upon a time, autumn was my favorite season, but all that changed a few years ago.
October – Breast Cancer Awareness month
In September of 2010, I looked forward to October with some enthusiasm. It was my first Breast Cancer Awareness month since my diagnosis 7 months earlier, and I didn’t know what to expect. I thought a month dedicated to people like me might be fun, and there were some amazing fundraising parties, but I was not prepared for the Pepto Bismol-colored tidal wave that engulfed me.
Now, when I think of fall, it’s with white knuckles. I’m either bracing for, enduring, or recovering from Breast Cancer Awareness month. In October, those of us with breast cancer don our pink boas, and work frantically to earn money for the legitimate organizations that are truly working for a cure, or helping people to live with cancer. Meanwhile, hucksters get rich off my misfortune by slapping a pink ribbon on a product, then bumping up the price by $5 to donate $1 to breast cancer charities. Everything is painted pink, even carcinogenic items. Well meaning friends pass around internet memes where they pretend to be pregnant, and this is supposed to somehow give hope, or something, to those women who lost their fertility to breast cancer. Everything is all about breast cancer awareness, as if breast cancer was some newly discovered affliction, and awareness could actually help you avoid it.
Yes, it’s true that there are things you can do to reduce your odds. But as of today, there is no guaranteed prevention, and there is no cure.
This morning, my YSC family lost another angel. This was the third loss for us in as many weeks. Rachel was interviewed for the same CNN Heroes story as me last year – the one where we honored Debbie Cantwell, and the Pink Daisy Project. In this clip, you can hear her voice, you can see the sparkle of her big smile, as eye catching as her orange bandanna.
We are warm blooded women, with hopes and dreams and responsibilities and heartaches. We are mothers, daughters, sisters, friends, lovers. We are individuals.
We are not mascots.
We are more than statistics.
Over the coming month we will be lumped together and presented to you as a barrage of numbers. 1 in 3 get cancer in their lifetime. 1 in 8 will get breast cancer. But I want you to see the faces behind the numbers. And I want you to pay attention to what these campaigns are really fighting for. Be wary of campaigns that are just for breast cancer awareness.
My friends are dying, and it’s not for lack of awareness.
I am aware of breast cancer, and I was for decades before I was diagnosed with locally advanced breast cancer.
You, no doubt, are very much aware of breast cancer as well.
Awareness will not prevent breast cancer, and while it can sometimes improve projected outcomes, early detection and treatment does not guarantee that the cancer will not return.
We don’t need more awareness. What we need is a cure.
For all the frustration that surrounds Breast Cancer Awareness Month, there are some wonderful organizations who are doing laudable work in the breast cancer field, and these organizations depend on the funds raised in October for the following year’s budget.
Pay attention to what a breast cancer charity is fighting for. Are they raising money for awareness, or a cure? If they’re working towards a cure, how much of their research money are they putting towards the stage of breast cancer that is actually deadly, metastatic breast cancer? There are also a number of much needed breast cancer charities that do not focus on research at all, but their services are critical to the lives and well-being of women living with breast cancer.
Just to cut through the crap a bit, I’m going to list a few organizations below that do an excellent job of serving the needs of women with breast cancer. This is by no means an exhaustive list.
The Young Survival Coalition: YSC helps young women live with cancer, to connect with others with similar experiences, and to not feel so alone. I credit YSC with helping me keep my sanity while going through treatment.
The Pink Daisy Project helps young women with breast cancer to deal with the practical aspects of life while they are going through treatment. This is the organization highlighted in the CNN clip above, and they help young women who can’t wait for a cure. PDP hired someone to come clean my home while I was going through chemo and to sick to clean it myself. They sent me gift cards to buy the necessities of life when I was counting change from the couch to buy diapers.
The National Breast Cancer Coalition is so serious about curing breast cancer, they set a deadline, 2020. Their approach is science oriented rather than political, and they are committed to this goal.
The Dr. Susan Love Research Foundation – this science oriented research organization is also working on some groundbreaking research towards the goal of ending breast cancer in our lifetime.
Living Beyond Breast Cancer – the goal of LBBC is to empower all women affected by breast cancer to live as long as possible with the best quality of life.
If you find yourself tempted to buy something you don’t really need – just because it’s pink and it’s October – why not send your $5 (or whatever amount) directly to the organization of your choice instead? That way it’s tax deductible, and you know for sure that all the money is going to the charity.
Help us find a cure for cancer. Help us make pink just another color. Help us take back October.
The sickness and poorer part of our vows were not an invitation. I’ll have you know that despite pneumonia, cancer, myasethenia gravis, a combined 18 nights in the hospital, more than 10 dashes to the ER, 8 years of at least one and usually both of us as full-time college students, layoffs, hours cut, car trouble, eviction notices, healthy diets, exercise, a sweet and miraculously healthy baby girl, daily “adventures”, good friends, a lot of wine, belly laughs, a home full of books, homemade dinners, long conversations late into the night, snuggling, holding hands, and occasional long walks on the beach, we’re happier and more in love than ever. You should also be aware that we have not given up hope on the richer and health part of those vows. You know where to find us.
Also, Happy Anniversary to my amazing husband. I love you more.
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