28 women finding ways to squeeze the day, every day, while living with cancer and it’s after effects.
Every year we converge on this little retreat center in the woods, on the edge of the canal.
Every year we laugh, we cry, we eat, drink, and dance,
We challenge each other, we hold each other up.
And even more importantly, we rest, and we are cared for.
Every year I come back home feeling two inches taller.
P.S. This year, I brought a spare camera and handed it over to the group, asking them to take pictures as well. I’m so glad I did. I came home with pictures that were complete surprises to me, and this year, I was so engaged in just being present that I hardly took any pictures at all. Thanks so much to my friends for picking up the slack.
P.P.S. The link in the first line will take you to the poem I read at the retreat. It resonated so profoundly with so many of us, and I received many requests for copies. (I’m not affiliated with the writer of the poem, but when you write stuff this good, it deserves a link.)
She would have appreciated the fact that she died at 4:20 on April Fools Day. That was our Meesh: If you can’t change the inevitable, then you might as well find a way to have fun with it.
We can also thank her for the fact that for a couple hours at her memorial service, that church housed more boob jobs than a porn convention. That would be us, her sisters in this breast cancer sorority none of us wanted to join; a sorority from which we all gain so much strength and comfort, and even joy.
Most of the time, we don’t pay attention to the way people look at us when we are out together: the surprise when they find out we all have breast cancer, followed by the sad eyes when they realize we are all going to die. We look so normal. We’re smiling, and laughing. How can we be laughing?
The truth is that we are all going to die. So are you. Some of us just happen to be on an accelerated schedule. That’s where Michele’s wisdom helped me the most. Michele had a way of telling her story so that it didn’t terrify the newly diagnosed girls. She would spin the story each time, so it came out with a message, a little moral or lesson to tie up the anecdote like the “you see, Timmy” at the end of each episode of Lassie. She didn’t preach, she just showed us how to call bullshit on bullshit, how to advocate for yourself, how to pick up and move on, and how to focus on what you can change, and how to spend your time and energy on what really matters.
During the service, the Pastor shared Michele’s words. I didn’t write them down as he was speaking, so I must paraphrase, but they really stuck with me:
“Don’t wast your time on people who suck your soul out of you. Life is too short. Invest your life in what matters, because in the end, what doesn’t matter… doesn’t matter.”
I’m still angry that she’s gone. I’m still angry that her young daughters will grow up without her. But Michele would not want us to allow our anger or sadness to diminish the richness of our lives. Michele put so much love and energy and strength and wisdom out into the world; her influence lives on through all of us. Robert Holden said “the real work of our life is to love and be loved,” and the best way we can honor Michele’s memory is to do just that.
Thank you, Meesh, I’m a stronger woman for knowing you.
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.
We spent the evening walking down Bourbon Street in the French Quarter of New Orleans, The Big Easy. It’s Friday night, and I’m told much tamer than the partying a few nights earlier on Fat Tuesday.
My friends and I stand at the corner waiting for the light to change so we can cross the street, while revelers around us brazenly jaywalk – behavior that seems foreign to this group of girls from Seattle.
We stop for drinks at Howl At the Moon, and when they are delivered in 36 ounce plastic cups, the server explains that the 3 for one special means everyone is automatically upgraded to a triple, and the cups are plastic so we can take them out in the street.
We look outside: Everyone does carry their drinks with them in the street.
Don’t worry, we adjusted. It wasn’t long before we were jaywalking while carrying open containers. Talk about multitasking.
Beads hang from balconies, street lights, stop signs, trees, public art, and anything else that will sit still long enough to be draped with the twinkling strands in all colors of bling.
A sprinkling of rain and a sturdy breeze lends more sparkle and movement to a street that is already teeming with life; humans, pigeons, palm trees, flowers, moss, mules, dogs can all be seen in a single glance.
The next block we walk through is closed to traffic, and pedestrians fill the area between the buildings as they laugh, dance, and wander amongst the street performers and live music wafting from the insides of bars and restaurants, music so rich and textured it seems to hold a physical presence in the space as well.
Bright lights and dark corners, high contrast colors, bricks and stucco, trolleys and mule drawn carriages, trees and bling,
and ornate balconies populated with blow up dolls
conspire to create an environment that is, to me, both fun and foreign.
The second anniversary of my cancer diagnosis is quickly approaching. Of course it has me thinking. A lot. Not all the thoughts are happy thoughts, but that just comes with the territory.
But some of those thoughts are happy thoughts. Warm, fuzzy, happy thoughts. Like the girls I met because I have cancer.
These are women I would have been proud to count among my friends even before diagnosis, but I can’t imagine a scenario in which I would have met any of them outside of cancer.
This weekend a group of us traveled to New Orleans to a conference for young women with breast cancer. We learned about treatment protocols, late effects of treatment, nutrition, dealing with the impact of cancer treatment in the bedroom, and myriad other topics, and we got to spend time with other women whose lives have been similarly impacted.
Good times, good music, good food, good company…
I think the people with whom we surround ourselves have a huge influence on our happiness. Sure, we all have those people around whom we have to tiptoe and walk on eggshells, but we can dilute their influence with so many more amazing people, people who lift us up and love us for who we really are. I’m so blessed to have such amazing friends – that they understand what I’m going through with cancer because they’ve been there too just makes it that much better.
I’m a very lucky woman.
Of course I still worry about how many years I have left, but even more important than the number of trips you make around the sun is your traveling companions along the way.
CoffeeJitters is an affiliate to a number of sites and services. I do not endorse products I don't love. I may receive compensation if you purchase items from links on this website.
. 
. 
. 
. 
. 
. 
. 
. 
. 
