I am happy. Right now. This minute while I’m typing these words.
It’s a little odd, I think, how seldom I recognize my own joy in the moment. I remember having been happy, but I seldom stop and think: “Wow. I’m really happy right now.” For me, the camera plays into the equation. I can really get lost in a moment with my camera, light, shadow, colors, movement, texture, and a certain twinkle in the eye. I can get lost in my happy little image world and have a perfectly lovely time. Hours, days, or even weeks later, as I’m editing the photos, I discover just how awesome the event really was.
Embracing Right Now
Life is full of beautiful moments, moments where the beauty is not in the image, but in the experience. Sometimes I let myself think that a moment must be documented to be real or precious. Not true. Building memories is important, but the initial experience is more important than each time it’s remembered.
Sometimes, I have to just put the camera down, and join the party myself. Even better – hand the camera over to someone else and let them capture me in the moment.
I still enjoy photography, but I have to remember not to let it replace interacting with my friends and family.
What about you? What can you do to embrace right now?
I was selected for this opportunity as a member of Clever Girls Collective, and the content and opinions expressed here are all my own.
Cancer didn’t make me stronger; it sapped my strength like nothing I’ve ever experienced before.
You know what made me stronger? Having to make tough decisions and stand by them. Calling bullshit on bullshit. Moving forward despite the fear. Getting up every single day to be a mommy to my little girl, no matter how crappy I felt. Showing up for every treatment, even when I wanted to hide under the covers. Being a part of a support network for other young women with breast cancer.
We don’t get through this alone; we are all so interconnected. There is strength in numbers, in solidarity, in community. We take turns having bad days, and on our better days we lend our strength to others. There is strength in knowing I am not alone. Others have traveled the road before me, and my experience will provide strength to those who come behind me.
There is strength in helping others, in standing up and fighting for a cause. There is strength in giving back, and paying it forward. There is strength in understanding, and being understood. And there is a great deal of strength in our collective knowledge of how to survive and thrive despite this nasty and devastating disease.
This is why I am so passionately supportive of my support network for young women with breast cancer, the Young Survival Coalition.
A week ago, YSC Seattle held it’s annual fundraising event. Instead of the usual party and auction, this year we held an athletic event. Tour de Pink indoor was our first cycling fundraiser, and it had a completely different kind of energy than the party. We packed the room with spin cycles, great music, and awesome people. Perhaps it wasn’t the same fun as partying, but there was collective energy of focus and determination that was quite different from what happens on the dance floor.
Energy builds on energy, focus encourages focus, and it’s hard to give up in a room packed with that much determination.
We raised $11,000.
Up next is a bigger, outdoor ride. Tour de Pink West Coast is a 200 mile ride from Thousand Oaks to Foothill Ranch, CA, to benefit YSC across the nation, and it’s less than two weeks away. I won’t be riding along, but I will be with them in spirit, you can, too.
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.
Friday the 13th was a travel day. My time was spent contending with weather delays, missed connections, mismanagement, cancelled flights, long lines, and four separate boarding passes before I finally broke free of the Houston Airport. That flight actually took me to Washington D.C. (yes, coast to coast) before I could reach my destination in Indianapolis.
Exhausted from the chaos of the previous day, I joined my colleagues for breakfast, and the opening address from our CEO. I leaned back in my chair, sated with a delicious breakfast, and allowed the coffee to find it’s way through my circulatory system. I was acclimating. Then the words she was saying started to sink in. Like scraping the needle across a record, something in my brain screeched to a stop. I sat up straight.
Wait. Change?
You want to change YSC? You want to change the one thing that has been most helpful in keeping me sane over the past two years? I looked around the room; I wasn’t the only one looking uncomfortable. This wasn’t just any room, this was a room full of breast cancer survivors and supporters. These are women and men who are all-too-familiar with having change thrust upon them, changes no one should have to endure.
While the purpose of the event was to steer the organization towards a sustainable future that supports its mission to provide services for young women with breast cancer nationwide, I got a little something else out of it as well. The three day weekend distilled itself quite neatly into a lesson in change management.
On one day I saw agents rolling their eyes, defensively barking at everyone that they can’t control the weather, and disparaging travellers who were exhuasted, hungry, sore, irritated, anxious, travelling with a hoard of kids, and some (who may or may not have been me) who desperately needed to go to the bathroom but didn’t want to lose their place in line after already waiting an hour. To be sure, I do not envy their jobs; dealing with that many people in a crisis situation far from home can’t be easy. But in many ways the agents themselves contributed to the chaos and stress of the situation, encouraging it to advance from an unfortunate inconvenience to angry, pushing crowds.
The next day, I witnessed a very different method of dealing with change.
These are big changes that impact programs that were built with sweat, tears, and heart by unpaid volunteers. They are mucking about with, what is for many of us, our safe place. But I went home feeling ok about the situation, not because I agree with everything that has been decided, but because of the way the announcement and the subsequent activities were handled. The day was programmed around providing more information, and requesting comments, criticisms, and concerns from the participants. I’m fascinated by how liberating it felt to make a comment and have it really heard. Each time that happened, the stress lightened up a bit. After a night of dancing, things started to look a lot better the next morning.
There is also a great deal of value in hearing management say they don’t have that nailed down yet because they intend to consider our responses. Whoa. This was more than just letting affiliate leaders vent to get things out of their system, they were really collecting information.
I think there were two elements that were most effective in helping us process these changes: understanding and time. There’s just no way to quantify the value of being heard and really understood. Additionally, I have a better understanding of the plan, and on a logical level, I can see that these changes will help our organization be more nimble and responsive, remain sustainable, and ultimately help more young women with breast cancer. My head is there, my heart may take a bit more time to catch up.
And time was a critical element here as well. It allowed me to get used to the idea. These changes are six months off, so we have room to acclimate, plan for them, and make the best of them. Over the weekend there was a pattern of relieving pressure by taking and answering questions, followed by some time, and then another pressure relief opportunity. By the time I got on the plane to return home, I was still unsure how I felt about some of the elements, but the angst was gone. The transparency demonstrated throughout the event gives me hope that concerns that arise in the interim will be handled with the same grace.
It should be noted that the participants in this meeting are women and men who have already faced daunting changes and challenges, rose above them, and used them as a catalyst for helping others and improving the world around them. We have plenty of experience in adapting, and making the best of a situation. Give us a little time, resources, and infrastructure; we will make this work.
On the other hand, less time in Houston would have been preferable. But DCA turned out to be a beautiful airport (top photo), and I got to see the Washington D.C. monuments from the air, both coming and going. It’s been a quarter century since the last time I saw them.
How do you deal with change? Do you prefer to have time to get used to an idea? Or does more time mean you stew and worry more before it happens?
“People give you 3 months to mourn, and a year to have cancer, then they expect you to get back to normal.”
I don’t know where I heard this quote first, but I’ve experienced the truth of the statement both in terms of mourning and cancer recovery.
It’s not that I’m faced with the reality of that quote on a daily basis, but it does remind me that while the lingering effects of my cancer still impact every single day of my life, many around me have moved on; my cancer is old news and in their minds, overplayed.
I understand this perspective; I’ve been there myself. I know people whom I’ve avoided because every conversation, for years, involved detailed information about the wellbeing of their bladder or their gout.
It does get old, and frankly, there are some details I just don’t need to know.
I do try to avoid being that person who unloads in that manner, but the fact that cancer is still a part of my present life is depressing to others, as well. People want good news. Something better than “I was able to hold on to my pen long enough to write a whole page,” which is a big deal to me as a writer and avid journal keeper whose dominant arm was significantly impacted by cancer treatment, but not so meaningful to everyone else.
I don’t talk about those things anymore. I swallow my words, and put on a mask, and when people ask how I’m doing, I just say “awesome” and leave it at that.
This is where a group like the Young Survival Coalition, and a retreat like Harmony Hill, are so critical to the wellbeing of a cancer survivor like me. It’s not just a retreat away from the stresses of everyday life, it’s a coming together with other women with similar experiences and battle scars. A three day weekend where we can compare notes, treatments, ongoing issues, what works for me, what doesn’t, and how we’re coping with all of it is not just healing, it’s normalizing – in a good way.
We’re not alone in this experience. We can share without the fear of being perceived as complaining. We can make fun of our condition and laugh at cancer in a way that often makes others uncomfortable. It’s summer camp crossed with a slumber party, plus booze and minus the curfew. It’s yoga, meditation, labyrinth walking, beach combing, flower smelling, and lawn napping, followed by good food, good conversation, and tearing the best parts out of magazines for each of us to make something uniquely our own.
And it’s research. I’m looking forward to another surgery in the next few months. This one will involve 12 hours under the knife – that’s a long time – plus six weeks of recovery. It’s not something to take lightly. But I spent a weekend with 23 other cancer survivors, most of whom have already endured this surgery. I got better information on what to expect and how to prepare from these women who already went through it than from the doctor who has performed this procedure hundreds of times. And that’s to be expected. As much as these doctors know about performing this procedure, they haven’t experienced it.
I’m so thankful I have this group of survivors in my life. That we got to get away together, away from all the other stresses and demands of life for a couple days seems like a miracle. I know it took a lot of work to pull it together, but it was so worth it. I love you girls.
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