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.
“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.
“Walk as if you are kissing the Earth with your feet.”
This weekend, I’m planning on making a few laps around this tree with that thought in mind. This labyrinth, and the Harmony Hill retreat center where it resides, is one of my favorite places in all of Washington. I’m also planning on spending my days doing yoga and soaking in the beauty of hood canal, followed by nights filled with girl talk, laughter, and the 3 Bs: booze, B-movies, and contraband bacon.
And boobs. There is always talk about boobs. It’s de rigueur at a getaway for young women with breast cancer.
I’m hoping a weekend away with women who know exactly what I’m going through is just what I need – a lot of fun. It sure was last year. And this year – no homework!
Those were the words I wrote without thinking: “a relearning how to dream after cancer blog.” I was shocked when I looked back and saw that I described my blog in this manner. Since writing the post, I’ve gone back and stared at those words countless times. To be honest, the words make me a little uncomfortable. Those hastily written words contain truths I didn’t realize were simmering under the surface.
Friday Night I found myself on stage at Courage Night as one of five women reading our work about surviving cancer. In the Q&A session, as I was describing how my blog had evolved, I recited this line from that blog post: “CoffeeJitters has been a single girl making her way in the world blog, a wedding blog, an infertility blog, a photography blog, a quitting my job and going back to school full time blog, a wow! I’m pregnant! blog, a mommy blog, a cancer blog, ….” except I swallowed the words “a relearning how to dream after cancer blog.”
No, in a room full of cancer survivors, women I love and trust, and who understand better than any one else, I could barely voice those words I had already published. I’m still not quite sure whether I said them out loud when I was at the mic.
I am currently taking Susannah Conway’s “Blogging from the Heart” class, which is proving to be more magical that I could have ever dreamed. This class is also bringing me face to face with that line – “a trying to relearn how to dream after cancer blog.” She is asking me to dig deep, and think about the purpose of my blog. It is easy to spot the focus on gratitude and appreciation of everyday magic, but this blogging practice is also challenging me to stretch.
Just as a physical injury can leave the body bound up in a tight little ball of muscle, the emotional trauma can have a similar impact on the spirit. Yoga and stretching and movement will little by little improve the flexibility and range of the body, but it’s sometimes painful and frightening. It is work that exists entirely outside of the comfort zone. I’ve reached the point where I understand what I have been intuitively trying to do, yet simultaneously resisting – to improve the flexibility and range of my imagination, of my ability to re-dream my future.
The process is slow and difficult, but looking back I can see how I have gradualy expanded the time frame of my dreams. Since diagnosis, I’ve had trouble imagining my life more than a few weeks or months ahead. Now my dreams stretch as far as five years out. Some day soon, I’ll be able to imagine myself at my daughter’s high school graduation.
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