The evening suddenly took on the feel of a family gathering where Jr. drops the F-bomb in front of Grandma.

We had known each other for years before we started dating and few months into our “couple-hood”  I had no doubt that what I felt was love. But instead of completing the romantic moment, Neil looked at me and said, “It is going to be a while before I can say that”.

I had no way of knowing that more than 5 years later – and having lived together for most of it – I still would not have heard those words from him.

And, what is even more surprisingly, I am mostly okay with it.

Neil has more than the normal allotment of stereotypical male communication issues. On the other hand, words are really important to me and I am definitely a communicator. I’ve always wondered why in the world he chose me – a writer who finds it easy to voice my feelings and is deeply passionate and outspoken about a million different things when he so clearly is…NOT.

Neil is very reserved and my zest for engaging life to the fullest must push his buttons in addition to our opposing communication styles. But even in that awkward conversation about love, he has never shied away from me. In fact, his whole-hearted commitment to me when I must drive him crazy, is part of how I know he feels the words he finds so difficult to utter.

So, I keep saying “I love you” and he routinely responds: “Why now?”

Even though asking “why now” is probably intimacy avoidance at its finest, it has given me a deeper understanding of my own layers of relationship and connection. I am sure Neil doesn’t intend to come across as an emotional ascetic – maybe he is learning what love is. It seems that I certainly am.

My best guy friend was thrown off when a girl he was dating said she loved him. He called me in a panic: “I don’t know what to do! It is too early! I like her a lot but I don’t know where this is going and it is too much right now”.

“I tell you I love you all the time and I have loved you for years. What is the big deal with this?” I ask.

“It is different.” He answered. But I wondered why? Was he worried that that statement of love was full of expectation? Ownership? Exclusivity? What do we mean when we tell someone “I love you”? What do I mean when I say it to Neil?

“I love you,” I say. We are playing golf, the sun is shining and there is an eagle flying overhead. My score is pretty good for once, the friends we are playing with are laughing and everything is glorious. “Why now?” Neil asks. Because we get to share this moment. We enjoy each other’s company and seek it out instead of finding it tiresome; we have common things to laugh at and do together. In our playtime I get to see us as friends, not just who we are in our relationship.

“I love you”. We are watching the finals on a TV talent show in which the performance has been breathtaking, and I look over to see a tear running down his face. “Why now?” Because he feels for these people, for their hard work, for the heart they put into what they do. He appreciates the beauty, lets himself be moved and doesn’t pretend otherwise. His sensitivity and innocence are why I am with him. I am reminded of what a good man he is.

“I love you.” I am on a hospital gurney getting ready for surgery to remove cancer from my body.  Things will never be the same, life is uncertain and I am terrified. “Why now?” he says ever so softly. Because love is all I have to hold onto. I need to hear something in my voice besides fear, and need to know that I part of something more than cancer. Through my love I remind myself of who I am and how much bigger life is than this illness.

“I love you” I say with a sigh. Frustration edges my voice. We are having a disagreement that stems from his inability to communicate and my tendency to make up for it by over doing it. “Why now?” He doesn’t believe me – I can hear it in his voice. I don’t blame him for his doubts, but the truth is that even when I am mad I wouldn’t chose to be anywhere else (or at least not for long!). Either one of can chose to leave, but instead we slog through the tough times together knowing there is more than just this moment. I appreciate his willingness to keep trying and am grateful that we respect for each other too much to demand that our individual position is the only correct one.

We are a society that throws “I love you” around a lot. We say it lightheartedly to people we barely know, toss it around when we are happy, and end conversations with it habitually. I’ve slipped up and said it as I am hanging up the phone when it was clearly inappropriate and not meant. Too many times in the past I have said it without thinking about what it means. Often what I intended by the words was felt as something different to the person hearing it. That doesn’t mean I should say it less – in fact, post-cancer, I probably say it more than I ever have. I just am conscious of what it means to me when I do.

When I pay attention to saying “I love you” to anyone – especially Neil, I come to a deeper understanding of what is going on inside me moment to moment. It challenges me to use language that is more descriptive to build a fuller picture of my feelings and fill in the gaps so that the person I am addressing understands what “I love you” means for me. By doing so, I give them space to experience the intent instead of getting tangled up in the baggage. And more importantly, I am better able to speak from my heart when I know what really resides there.

“Why Now?” may very well be a stalling or diversionary tactic from a man emotionally tied in knots, but through the untangling of my own I have become a better person. As I discover why I love, I am better able to actually DO the emotion of love.

And love is something we all could get better giving AND receiving.

As I re-started my yoga practice after several months absence, I  sat and took a deep breath as I brought my hands into Namaste and was asked what I bring to the mat to be released.  Tears pricked my eyes as I felt the pressure of one real breast and one latex prosthetic against the back of my hands, having forgotten AGAIN that this was my so-called “Divine” self.  I am reminded of how hard it is – how often I am reminded, how often I forget, and how much self-compassion it takes each day to move through this loss.

At the beginning and end of every yoga class, as well as multiple times throughout, we are asked to bring our hands together in Namaste.  For those non- yogi’s, the “Namaste” gesture is made by placing your hands in prayer position with your  thumbs resting in the center of your sternum at your heart chakra.  Namaste is a gesture of honoring that roughly  means “I bow to you”. My favorite translation goes something like: “The Divine in me greets the Divine in you.  And when You and I are in this place, we are One.”

I have always struggled with this concept of honoring the Divine in me. If I contain the Divine, than it must look something like Kali – the Hindu Goddess of Destruction, sprinkled with a bit of Mae West and the tiniest dash of a peaceful Bodhisattva.  Surely the Divine is pink lit and gentle, not this pain riddled, hyperactive, full-of -extremes joy-ride of a life.  As I sit here, again placing my hands in a gesture intended to remind me of who I really am, not what circumstances have made me, I try to breathe in acceptance of this moment  and this self, regardless of  its imperfections.

The Namaste gesture is held at the heart chakra  – and so is all my pain.  Not only do I have to work at accepting the meaning of the gesture, I must also consciously examine and release the physical pain that binds my chest following cancer treatment and thus, by proximity,  binds my heart.  The pain is not only uncomfortable but causes muscle tightness that restricts my breathing and mobility.  The more I try to shield myself from the pain, the greater it gets as I tighten down. As yoga opens up the musculature in my chest, it also opens the emotional body within me – releasing constriction  – and hopefully  freeing me to move more fully in the world – physically, emotionally and spiritually.  The only answer to my pain and to my healing is to accept it, and let go.

The heart chakra is also the home of compassion and balance.  The irony that my body is now partly masculine (flat chested and unable to bear children) and feminine (a full breast and still those hormones!) is not lost on me as I practice yoga. It reminds me to bring both aspects into balance within me.  The internal and the external realities of my self- perception may seem to be in conflict, but in truth only support one another, pushing me to be more than I think I am. My heart still lurches when I am reminded of my losses, but here on my mat I consciously open into that pain. In accepting instead of pushing away the grief, I bring the Divine joy in life and the grief of its losses – the polarity’s that make up my life – into balance.  In this acceptance lies the path to enlightenment – for both the peaceful Bodhisattva and for the Goddess Kali who had to accept grief in order to transform violence to love.

Accepting that the Divine resides within is accepting a life that is not void of pain, but one is greater than it.  Physical pain and grief are an endless well in me some days- the losses have been many and the compromises I have been forced to make are heart-wrenching.  But, such is the way of the Divine – it is encompassing, not exclusive,   and cares  only in how we choose to move forward, not what has occurred in the past.

Perhaps my continuous shock of realizing that I am missing a body part  is only a reflection of how whole I actually feel.  Maybe it is like the moments when I suddenly realize standing next to someone of “normal stature” that I am actually short. I feel GIGANTIC…how can I be so tiny?  This is not a moment of pain – it is a delight that I make such a large footprint in the universe with such small stature.  Maybe, as the years turn, this pain too – this loss and grief over my feminine identity – will turn to joy with the realization that I am so much more than this body.  In the meantime, as I bow my head and bring my hands into Namaste, I work again to honor the Divine in me – the blessed wound that keeps bringing me to a place of compassion and presence and examination of what is true. Though sometimes this wound is fresh, the pain always eventually recedes in the light of the joy that is this life.  A balance that is indeed wholly (holy?) Divine.

Namaste.

Later I was talking about a management position I held where nearly all of my staff were my kids age  – and how much I loved working with them even though it was often challenging.  Again, this was received with amazement.  I don’t understand why; who wouldn’t want to work with kids who see the humor in a customer named Longe Dong (SERIOUSLY!),  or who required a chalkboard in the bathroom so they could leave doodles for each other? The joy far outweighed the extra work, and the effort of giving them the opportunity will remain with them their whole lives.

Yet, despite our own efforts,  some young people’s lives are easier than others. A friend of mine recently celebrated her magical daughter with an amazing blog post, while another friend has retreated into silence as her adult son is incarcerated for a series of bad choices.  Both are amazing parents, who did everything they could to give their kids the resources and support they needed on their difficult paths to growing up.  The outcome of their efforts will likely be vastly different.

Being young is hard. Loving young people through it all is challenging.  They are our future – and as such deserve our best efforts.

I have not been the parent I wanted to be – we were poor and they witnessed more bad situations than I wanted them to know existed. We were homeless. We were sometimes hungry and often did without things their friends had.  They have known the pain of racism and classism. They have suffered irretrievable losses from a father who is challenged by his role as a parent.  I grieve deeply for all I wished for them that I could not provide or fix.  And yet, they not only survived – but thrived.

I often wonder how they are so wonderful despite all that I did wrong according to psychologists and talk show hosts.  Though there is much they could discuss in therapy, I did much right – the most important things not dependant on money, resources or material goods.  Then and now, I fiercely support and defend their right to carve their own path in the world.  They know, beyond the shadow of a doubt that I have their back, and that I will kick their ass thoroughly if they are being stupid. They know I love them no matter who they are or the difficulties they face. I require them to have integrity, to be honest and compassionate and to remember that the person they are dealing with could be them.  They are free to have whatever hair, tattoos, clothing, music or political tastes hit them in the moment although I do take photos for blackmail later! I do not judge who they love as long as they are treated well. We talk about important and trivial things – nearly every day. My son and I go out for lunch together often to catch up. We have deep and profound connection and respect for one another. I have always thought that maybe they have as much to teach ME as I have to teach them.

I have also had the good fortune to mentor many young people over the years  - some of whom had  trouble  as they fumbled their way through the world.  Many of them suffered abuse, taunting and ostracism from their peers and family for all the ways they were different.  Some of them just needed the big love and strong shoulder of a person who held them to being their best self. I held them all to the same standards I held my own children to, and I was gifted back enduring love and respect.  A hyperactive kid who needed his first job was a handful, but he made me laugh and someday he will have my job. Another young man was quiet and shy, but as I gave him opportunities he gained confidence. He became the one everyone looks up to – the big brother everyone wanted to impress and be like. But another young man took his life when he could not measure up to the standards set for him by others.  I will never be free of the anguish of finding out that he didn’t come home because my love could not erase the pain of a box he couldn’t fit into .

We have gotten too involved in thinking that the “things” are what make us good parents/adults. We worry that if we get a divorce, made a bad decision or fail to provide them with the right opportunities, tools or toys they will we will harm  our children.  Or, we pay for expensive school and buy expensive dinners thinking that matter. Too frequently we neglect the very things that would make a difference for them – to show up and listen and to respect who they are.

Young people look to us for leadership and watch how we deal with our own experiences (good or bad) to learn how to be adults.  They don’t have a lot of tolerance for cover-up games from their role models, they will just find new ones . Who do you want them to learn from? They are smart, they see our mistakes and call bullshit when we expect things out of them that we neglect in ourselves.  Perhaps that is what scares us as adults – they see us for who we are, despite who we project.

Our youth deserve the same attention to relationship that we would give a spouse – just because they are kids does not diminish the level of care we should take in our interactions. They are magic – the younger they are the closer they are to God, and the older they are the more they can see through our thinly veiled façade.  They are our future…what do we want it to look like?

We can make a lot of mistakes as parents and mentors without losing their love and respect. Being a “good parent” is simply a matter of showing up and being real. Our youth don’t need the “right” anything – they need us.  They need us to be honest, to communicate and to support their best selves no matter what.  It might not save them all – each of us comes into this world with karma that often is counter to all other influences – but we can make a difference by making the effort.

This was an opportunity not  only for us to voice our disillusionment, but to make small changes that, when undertaken by people en mass, make big differences in our lives, in our communities and in our economy.

We will not change the world without first changing how we are in connection to it.

Here is my list of  10 things we can each do that seem small, but do make a difference: 

1. MOVE YOUR MONEY TO A CREDIT UNION   November 5, 2011 was National Bank Transfer Day…a deadline by which consumers were encouraged to leave for-profit banks and move their money to credit unions.  In September credit union membership grew by 227,000; October by 214,00 and in the first week of November alone, by  40,000 new members.  Now if all of these people ONLY moved $100 each….which I am sure is far below average….well, that means that is over $48MILLION dollars moved from profit banks to local non-profits.  It may have not made a huge dent, but it made a dent.  And it created awareness. But more importantly, it brought your money back to the community – to smaller banks who invest in their communities.  It is easy to do, and don’t forget to move loans, mortgages and credit cards too.
2.  SHOP LOCALLY AND THINK SMALL  Stay out of chain stores as much as possible and shop local, small businesses.  In most cases you will not pay more, and really – even if it costs you a few dollars more, aren’t you glad you dealt with the OWNER???  Most small businesses feature local products so you are making a double impact on the lives of the people in your community.  Find your farmers market.  Use a non-chain store mechanic.  Eat at the local burger joint if you have to have fast food.
3.  GET OUT  Go outside and play. Go for a walk.  Take a hike. Ski.  Get yourself into the outdoors.  You don’t know what is worth saving until you have an experience with it.  Pick up garbage.  Join a trail cleanup crew.  Take your dog to the dog park. When you go for a walk, you meet neighbors, discover interesting new coffee shops, trails and flora and fauna all while you get exercise. People who spend time outdoors are the ones who work to protect it.
4.  TURN OFF YOUR TV  Television tricks us into believing that the lives of spoiled kids from Jersey are important and that we must spend $200 on high heels to be beautiful.  Mainstream media is for-profit, meaning that what they put out there for news/entertainment must be profitable. That means they are trying to get you to believe and to buy. You may think you are immune, but you are not….commercials are designed to subliminally affect us, violence dulls us and images of “beauty” demean us.  Nearly all children’s media is full-fledged brainwashing of our newest consumers with splashy graphics, coordinating clothing lines and stuffed toys.  Purse alternate media sources, listen to NPR, put down the remote and experience your community in person.
5. START A GARDEN It doesn’t have to be big, nor do you need skill, tools or experience.  A pot, dirt and a plant/seeds is all you need.  This is especially important if you have kids.  Growing things  outdoors puts us in tune with the weather, pests and the necessity of care and attention – all of which we forget when out world is so pre-packaged/protected. It is only by having a garden that the reality of global weather pattern changes sink in – I now plant the bulk of my garden almost 2 months later than I did 20 years ago.  And it is still too cold for some plants.  I would never have noticed otherwise except to complain about “bad summers”.
6.  STOP NEEDLESS SPENDING  Stop the consumer debt.  Pay off your credit cards.  Don’t buy the “thing” just because it is a dollar off on sale unless you really need the “thing”.  Stop habitual spending, stop emotional spending.  Pay attention to where your money goes – track it.  Whether you have a lot of it or a little you will be surprised at where it goes.  Cancel catalog subscriptions so that merchants are not telling you what you need and reminding you every month  with sales flyers  on already overpriced items.  You will be more satisfied with what you have if someone is not always reminding you what you don’t have.
7.  VOICE YOUR OPINION  You have a voice – use it.  If a company is treating you unfairly, tell them.  Take your business elsewhere.  Write a letter to the newspaper or to a ratings website or local news agency consumer group.  Don’t blow it off for the next guy to get ripped off or offered bad service.  You are not at their mercy. Vote – or don’t vote, but be politically active not neglectful or lazy.
8. VOLUNTEER You and your talents are needed.  It does not always require a big time commitment – I am a 3 year volunteer for a program that needs me only an hour or two a month – and even that is over the phone!  Volunteering gets you out into the community providing valuable perspective on your own life.  As the economy has suffered, many non-profit organizations have had serious declines in funding and need volunteers more than ever.  Pick your passion and put it to work. People need you.
9.  REDUCE, REUSE,RECYCLE  Ride the bus and get to know your neighbors and come home with crazy stories like I do!  Consolidate chores needing driving, carpool when you can, and take mass transit as often as possible.  Better for the environment and less dollars in the oil company’s pockets.  Don’t waste resources – make sure to recycle, buy in bulk, carry your own grocery bags.  Shrink the size of your garbage can and grow the size of your recycle.  Carry your own water bottle, coffee cup or silverware for takeout food.
10.  BELIEVE IN WHAT IS POSSIBLE  NOT WHAT IS IMPOSSIBLE We become negative when we are overwhelmed and there is much to overwhelm us politically, environmentally and financially.  But manifestation works by focusing on what you don’t want to happen as well as what you do want to happen.  Spend your energy on creating the future you want, step by step.  It is a marathon, not a sprint and your efforts may look small and insignificant, but  I assure you that everything you do with intention is anything but insignificant.

(This post was largely inspired by the book “Small Wonder” by Barbara Kingsolver…..a terrific collections of essays I suggest you find at your local independent bookstore  or through  The Elliot Bay Book Company  which ships!!)

But this October, my email was full of blogs from breast cancer survivors who were fed up with the marketing surrounding Breast Cancer Awareness Month. Tired of Komen’s attempts to copy-write the term “for the cure” and lack of actual dollars spent on finding that cure (relative to furthering Komen brand marketing), these women were justifiably frustrated. As the media portrays survivorship with the effervescent cheerfulness of pink boa’ed women marching, women remain sick, un-cured and looking for away to prolong their life with some dignity. There is justifiable concern that we have glossed over the reality of a disease we barely understand and don’t know how to prevent – one which we can only treat with highly invasive methods, and have not come close to curing. Many women are not celebrating during breast cancer awareness month; they are at home on couches and in bed, frustrated that they are forgotten, knowing they will likely die before a cure is ever found. An unpopular story in the media seeking a positive light on the current “favorite” disease.

I understand.

As we celebrate or survivorship, these women with metastic cancer, who have lost their hair AGAIN, who are suffering from lymphedema and having to display handicap parking stickers before they are forty because they are too sick to walk, must not be forgotten. For them pink ribbons are not enough. Too frequently these women, still fighting long months and years after their diagnosis, get pushed to the background in the “fight”, while we who have survived march and wave pink ribbon flags, and go about our lives more or less as we had before.

I understand the frustration around pink ribbon everything and fundraisers that don’t result in significant change. But, we must start somewhere. “Small” things can make a difference while we also keep pushing for better services, treatments and a cure.

Recently, a breast cancer blogger I follow wrote a blog piece about whether or not it is okay to “indoctrinate middle school kids into the pink ribbon culture” by public schools endorsing a breast cancer fundraiser to “pink the town”. These youth raised significant funds for the program Breast Friends, (a resource for ALL women’s cancers) that provides (among other things) financial resources for women undergoing cancer treatment – a highly worthy cause.  And yet, she felt questions were raised regarding this praiseworthy fundraising event.

The article questions making breast cancer more important than other diseases, and raises concerns regarding the predominance of “preventative” education – inaccurately promoted educational content for a disease we have no idea how we get. Then there is the disturbing prevalence of using a disease to raise money for an organization in which only a fraction of the proceeds go to good use that is tainting even worthwhile fundraising efforts.

But, I think our frustration in how slow a cure is coming about causes some of us to be blind to the good that this movement has done and how  small things have drastically impacted the lives of women. Even the fact we TALK publically about breast cancer now is astounding to me.  All this hoopla has made a difference.

The thing that is most important about pink ribbons, a whole month set aside for awareness or kids saving pennies, is that it empowers people to make a difference in someone’s life.  Small change DOES matter in terms of resources and emotional support for patients and survivors.  And when we look past the marketing, we can choose to see fundraisers and pink ribbons as a reminder that we are not alone. People care about our struggles and want to do something – even children too young to know what the loss of a piece of our womanhood mean or what the reality of fighting for our lives looks like.  Empowering people to make even a small difference doesn’t take away from anyone – it opens our hearts to give more, and also teaches us to receive.

We survivors need to know we are not forgotten – all of us – healed, sick, celebrating or still in treatment. Cancer goes on for us every day, long past when the people around us have forgotten that we ever had it.  We still have to look in the mirror and face our fears in the doctors’ office.  We have been tough, but we still have our moments and people want us to know they haven’t forgotten.

Pink ribbons are not just a marketing campaign by big business, though it may have started that way.  It has morphed into everyday people trying to show support and make some tiny bit of difference. Though  breast cancer is no more important than other cancers,  it just happens to be one that so many of us are profoundly affected by through no fault of our won.  Every day people need to feel empowered – they need to feel like they have something they can do.  And, to the newly diagnosed, this outpouring of love and caring disguised as a pink ribbon, makes them feel less alone in days filled with  grief, uncertainty and fear.

Without a doubt we need to pay attention to how we donate and show support — and there are far more effective organizations than Komen. Funds are needed every month, not just October and not just for breast cancer. But because one organization has used a disease to its own marketing ends, does not mean that we should turn our backs on doing what we can –regardless of our age- to show support and make someone’s life a tiny bit easier.

Though pennies from kids may not find a cure, they will keep the power on in the home of a woman spending her money on cancer treatment. That deeply affects a life, as a does a support phone call from a volunteer or a ride or hotel room while undergoing treatment – all services that are funded by donations large and small by people who care.

Awareness, over-the-dinner-table-conversation, and pennies put into action by every day people are the ONLY way we are going to affect change in any sphere – politically or medically. Choose organizations that provide patient quality of life services or local, community resources. Keep the conversation alive, stay educated and use/donate your money wisely. We absolutely need to hold big fundraising establishments like Komen accountable for how they spend our donated money.  But don’t throw the baby out with the bathwater – donating to the right organizations can make a huge difference in the day to day lives of cancer patients. And showing support to patients goes further than you may think.

There is also a more global reason to not question whether kids doing a fundraiser is a “good idea”. Because those kids felt they made a difference, they will grow up believing in the importance of doing what they can. Our world needs less cynicism and more empowerment. As we teach our youth they can make a difference, they will feel their actions matter. And they will seek out other ways to make a difference.  Someday it could be you that benefits from their unselfishness. Our actions always matter.

This is how we change the world. Change happens through small events -each of us doing what we can – large or small. Ghandi said “Be the change you want to see in the world” . Change, revolution, healing, and a cure start with each of us.

For more information check out:

Breast Friends

LiveStrong

The American Cancer Society

The Young Survival Coalition

The American Cancer Society Relay for Life

I was getting ready to leave on a week-long trip to the desert of eastern Washington where each summer solstice I am part of a large women’s celebration. The gathering drawings inspiration from numerous religious traditions (mainly pagan) and includes an adaptation of a Native American tradition called give-away. The intention is that participants bring a meaningful gift to pass on to an unknown receiver. The process of letting go is an important aspect of the tradition, as we cannot receive if we continue to hold onto that which we no longer need. The wrapped items are placed in a pile in the center of a blanket. Each participant chooses the gift that calls to them, and it is surprising how often what they choose has deep meaning to them. It is as if the items find their way to the next owner.

I had waited until the last minute to put much thought into my give-away, which was unusual. As the Solstice approaches, I am always on the lookout for signs for what needs to move on to the next person. But this year, nothing struck me solidly, until the blanket fell out of the closet knocking me in the head. It was a full size Pendleton wool blanket; midnight blue with a sunburst of oranges and reds, in a pattern no longer available. It had been unused for years.

This blanket had been a gift from a man who hurt me immeasurably. For several years, the violence, shame and humiliation I was subjected to left me broken until a desperate run for freedom on a grey day in June. I didn’t really want to give the blanket away – it was worth several hundred dollars and I loved its heavy warmth. Yet, I was unable to use it because of the memories and didn’t want to pass the karma on to someone else. Still, it DID fall out of the closet. I tucked it into the corner of my car as I packed so that I could think about it, wrapped another item and set off for the week.

The blanket had sat in my tent all week, and as I returned to pick up my give away for the ceremony, I had more or less had come to terms with the fact it was moving on. It made me unreasonably anxious though, and I assumed I was worried about who would get it and if the blankets history would follow. I had learned to trust this ritual and had seen too many times how people received what they needed to receive to doubt the magic. Besides, the history was mine, not the blankets and I had moved on. Sighing, I grabbed the only “wrapping” I had – a garbage bag – which I tied it shut with red yarn to designate its “sacredness”.

Every year, the process of getting 200 women split into groups of less than 10 was a challenge. And, as we were supposed to keep our gift a secret so that it could be chosen from the heart, not the brain, we weren’t supposed to be with people we were close to. This time, we were instructed to choose a group based on a strong feeling – positive or negative – to someone else until our group number was reached. I hate to admit it, but I chose my group because of the challenging negative feelings I had about a tiny blonde woman with a squeaky voice wearing all the hippy trappings (including the name) of a pseudo-Native American. I am harshly judgmental of people who think they can buy their way into a culture or spirituality and am very sensitive about wanna-be’s. Her California looks and abrupt attitude rubbed me the wrong way even though I had heard she was the “real deal” –a traditionally trained and well respected medicine woman. There must be a reason I felt so strongly and I might as well figure it out. Besides, if anyone could handle the history of this blanket, it was her, regardless of my personal feelings. But I don’t get to choose who gets the gift and I waited through several rounds while my large package was passed over. My agitation grew immeasurably as time passed. I couldn’t sit still and was on the verge of tears. What could I say about this gift that I alternately detested and loved? It felt wrong to give away something so filled with bad memories. I was completely unable to pay attention to my own chosen gift, or to anyone else’s.

Finally, with little surprise to me, it was the tiny blonde lady who picked my gift, and as she opened it, her eyes filled with tears. “You know the tradition of Pendleton blankets?” she asked.

I did. Pendleton blankets were taken from Oregon to be traded by the whites for supplies from the Native people. Gifting one of these high quality blankets bestowed honor and having one was an indicator of wealth, as it would keep the owner warm and could be sold if need be to support them. It was these associations that made it so easy to give away blankets contaminated with small pox as the British troops sought to obliterate the resistant tribes.

As soon as I had the chance I took her aside to explain about the blanket, but before I could say anything she wrapped her arms around me and said, “Clearly this is a big gift you give me, I can see how difficult it is. Thank you for honoring me with it”. She chose to see it as a gift of honor, continuing the blanket tradition but I felt as if I had just given her smallpox. I felt worse, not better, and through my tears I was speechless – unable to explain and uncertain why my reaction was so strong. I burst into tears and ran from the gathering, leaving bewildered friends in my wake.

Running barefoot through camp I blindly sought a safe place where I wouldn’t be found and could cry in peace. My feet led me to the empty sweat-lodge. The sweats were over for this year and everyone was at the give-away ceremony, leaving it peaceful and too far away for anyone to hear my sobbing.

The sweat-lodge is a short, squat dome large formed from native vine maple poles, and covered in blankets. For the gathering we build a new one every year large enough for about 15 people to sit in relative comfort. The sweat lodge ceremony is one of physical and spiritual purification as individuals pray and sweat together in the dark. A fire is built directly outside the lodge in which a number of rocks are heated up. The hot rocks are brought in between rounds, and placed in the center pit. The door is then closed, water is poured over the rocks and the Pourer leads the group in prayers and songs. A lodge can take up to 5 hours to come to completion, and the fire-tenders are responsible for the fire, the heating of the rocks, the care of the women inside and holding the energy of the space for healing work to be done. I have been fire-tending for 15 years and was one of the three leaders of the lodges until this year. It is a sacred space, and a natural place for me to run when I was in despair.

I threw myself through the doorway of the lodge in relief, my head resting on the still warm stones from the previous nights lodge. The tears came unhindered now with a shocking fury. With no one to hear except the ancient ones and spirits that held the lodge, I screamed my grief until my throat was sore. I felt I had been ripped open and was suddenly, terribly heartbroken. I wasn’t upset about giving away the blanket with all that history, I was sad about finally letting go of a long held secret. For the first time I allowed myself to grieve the years of subjugation and desperation. I was so ashamed of the story I had lived through that I had held it tightly against me – couldn’t tell anyone, couldn’t put it anywhere, couldn’t finish processing it by leaving it behind. I kept the knowledge of what I had compromised in order to raise my children hidden because of what I thought it said about me. I didn’t want anyone to know, because I didn’t want them to think I had been stupid. But after all these years – especially after cancer had tried to kill me – I finally understood that I had done what I needed to do to survive. Sometimes it isn’t pretty, but there it is. Burying something so deep do not release you of it, it simply weighs you down.

As I gave away the blanket, I gave away the only thing left of that time, and even though I didn’t want to hold it, by letting it go I was uncertain what would happen. Looking at it reminded me of my shame, and in releasing it I was letting go of my own self- judgment. As I was moving into my pursuing new dreams, I no longer needed to hold any of this – it was all just part of the path that had got me exactly where I needed to be. In true give away fashion, I had let go of something with deep meaning that I had moved beyond so that I could create room for the next thing I needed.

It felt like I had been crying in the dust for hours, but I didn’t once feel like I was alone. I felt hands in my hair, on my back, breath in my ears. I heard sighs and murmurs and opening my eyes was surprised to see I was still alone. I returned to the gathering feeling a lightness in me that I cannot explain. As I neared the still gathered circle my friends approached me, and for the first time, I explained enough of my story for them to understand that my give away had been profound. As they held me, the blonde woman asked if we could go away and talk. I was ready now.

The sun came out for the first time that day as we sat in the meadow and talked. I told her the story of a young woman in poverty with two with two children who sold herself to a man who said he would take care of them. He did, but the cost was enormous to her and she lost who she was in his anger and violence. He told her she was worthless and stupid, and she believed him; this was her second marriage, and if she made such bad decisions twice, than stupid she must be. But as she talked more and more to her ancestor spirits, she began to grow stronger and wondered if there was more in her than he said. Somewhere in running a farm without his help she learned she was capable and that most mistakes are fixable with some hard work. One day she ran with her two children and even though she went back once, thinking that she could make it work out, she didn’t stop listening to her heart again. When she was left with a million dollars of his debt, bankrupt and homeless, her worst fears had come true, only to find that she was happier that she ever imagined possible. It was not the end after all, but the beginning. And now, years later, all her dreams were coming true.

The blonde woman listed to the story without ever taking her eyes of me, tears flowing down her face. When I was done, she took my hands and told her own mirror story, minus the children, adding health issues and ending at the point where she had declared bankruptcy just before the gathering and did not know where she was going to live when she left us. The traditional meaning of receiving a Pendleton blanket — the honoring of the individual and the gift of wealth, was initially what had struck her so deeply. In knowing the story behind the blanket, she had received a gift of hope and courage from one who had travelled the same roads and come out the other side.

As we rejoined the gathering I finally was able to pay attention to the gift I had received sitting at the blanket. With happy tears in my eyes I again looked in the gift bag that contained a bag stamped with the words “Give Happiness” filled with lavender, the herb representing peace and cleansing.

I was diagnosed with breast cancer on September 19, 2008.  My world was tipped upside down, and as things settled into their new form, I could only think of surrounding myself with as much warmth, love, prayer and hope as I could.  So I headed to the yarn store.

A life-long knitter, yarn connected me to generations of women whose hands were always busy with some sort of stitchery. My great grandmother taught me to crochet and knit when I was little, and I have a closet full of scarves and afghans from her.  Even though she has been dead for 30 years, the loving thoughts she put into them still hold, and I remember happy days sitting with her as she worked on them.  I needed to surround myself with that same sort of contented longevity as I embarked on the unknown path of cancer treatment and survivorship.

The local knitting shop was a high-end expensive place with yarns that would knit sweaters costing an entire month of my income. Exotic, beautiful, hand dyed yards in a rainbow of colors – I was not going to short myself and didn’t even look at prices. I shopped with my hands…touching, looking for weight and texture, and softness…it would have to be the softest yarn as my already hyper-sensitive skin healed from surgery and radiation. I didn’t want to jump on the “breast cancer pink” bandwagon, but my years as working in Waldorf schools had ingrained in me that rose was a soothing color of heart-healing. The only thing I knew about my journey for sure, was that my heart and body were going to need a lot of healing.

I wasn’t the typical customer for this shop, looking much younger than my years and clearly not of their usual customer’s income level.  I thought I had it handled – that I could tell the saleslady what I wanted to do and not get into too many details. I was wrong.  As she asked what kind of project I was starting, I burst into tears.  Alarmed, she went behind the counter to grab a handful of Kleenex, which I gratefully used to wipe mascara tracks off my face as I sniffed back the tide.

“I am sorry”, I finally got out. “I was just diagnosed with breast cancer and I am going to knit myself a shawl to wear while I am undergoing treatment.” Her eyes welled and the store grew silent.

The culture of knitting shops is such that there are always women hanging out, knitting comfortably together, receiving assistance with difficult patterns or advice regarding difficult families. Regardless of knitting’s resent popularity resurgence, knitters are typically older women of the same age that usually worries about breast cancer.  Surprised enough that I was there to buy yarn, their faces registered shock and sadness that someone so young was told she could die. Tongues clucked in sympathy and eyes softened as they went back to their work.

As the clerk and I both regrouped, we wandered the store looking for just the yarn to contain the sorrow and hope of my future. With no clear pattern in mind, the possibilities were endless, but nothing was right until she went to the back to pull out the last skeins of soft Merino wool that had been put aside as a sweater kit. They were an unevenly colored, hand dyed, deep rose; soft and beautiful and everything I had hoped for. Tears flowed again and I took ragged breathes as we began to talk patterns.

I am an experienced knitter, and had an idea of what I wanted it to look like.  I was looking for an easy pattern.  “I want it to be kind of lacy, but warm – and,” here, I paused as I choked up again “I don’t think I can follow much of a pattern right now – my brain is not working very well”. My throat closed on those words; nothing seemed to be working very well for me right then and my brain was the least of it.

She began to write out notes on a scrap of paper; “This will be a beautiful repeating scallop pattern” she said “once you get it started, it will be easy to keep going, and if you make a mistake it won’t show.  And it will go fast.” We both realized that my time was short to get this done with my surgery less than a month away. The thought was too overwhelming, and once again our eyes filled with tears and we turned away from each other.

With a bag full of hope and beautiful hand carved needles to craft it with, I was eager to begin. Everywhere I went for the next 3 weeks, my yarn went with me.  As I attended doctor’s appointments, planned for my time off and talked to my family and friends about my diagnosis, I worked into my shawl prayers to allay my fears, the good wishes of my loved ones, and plans for a cancer free future.  I knit on my lunch breaks, and the men who worked with me sat and watched as we talked about the sorts of things men talk about when they want you to know they care about you without saying so directly. Their grief and hope was knit in too.

The week before my surgery, my shawl was complete. It was big enough to cover my whole body when I was curled in a ball (which was often the case); warm and weightless and full of every type of healing magic I could weave into it. When I woke in the recovery room, drugged, sick and in pain, it had already been placed over me by unknown hands, and was never far from me afterwards.

My shawl was a reminder of all that I was as I suffered through the losses and fears around what cancer had made me become. As I made my way through radiation treatment and the exhaustion resulting from it, it held me warm and snug as I slept, providing some relief from the pain and devastation I would face again upon awakening. It covered my boyfriend and I as we cuddled on “date nights” watching movies and drinking wine, trying to regain a sense of normalcy. It even came with me to the dentist when I had the teeth I broke clenching my jaw in pain from surgery repaired.

Over the next three years, I was like Linus – the shawl came everywhere with me, especially if I was feeling uncertain. But, as my third anniversary approached, it came out less and less. One of its last outings was in May, nearly 3 years from when I first saw a doctor, my head rested on it as the  permanently scarred area where my right breast once lived was tattooed with a design of my choosing, as I reclaimed the body cancer had laid hold of.  As it had held me together when I lost so much of myself, it provided comfort as I redecorated.

The last time I had my shawl, I brought it with me to a women’s retreat where I was facilitating a workshop and rite of passage ceremony for women who have experienced a life threatening illness. I was in the middle of my own rite of passage – not only in leading the workshop, but because I had been accepting into grad school, and received a scholarship, to pursue my Masters of Fine Arts in Creative Writing. Writing was a long held secret dream and cancer gave me a topic that was something I could justify spending time writing about.  I began a blog about the lessons learned and earned through life changing events. I “allowed” myself to indulge in writing because writing about cancer was a good, socially responsible thing.  But really, I was beginning to realize that I was worth doing something wonderful for – even when I was not “sick”. And dreams will never come true if you don’t give them a chance. It scared me to think I could have died without doing the one thing I always wanted to do.

In the same way that I bought expensive yarn and knitted so much hope into my shawl, I began crafting a new dream as I thought about grad school. I was beginning to realize that I didn’t want to be a “cancer writer”….I wanted to be a writer.  Period.  While cancer may have opened the door for me to pursue dreams that I deemed unworthy before, it was up to me (not cancer) to walk through them.  And I was walkin’!

After the ceremony, I had my shawl wrapped around me when a young woman, newly diagnosed with cancer, stood shaking and alone, strongly impacted by the ritual we had created. I dropped my belongings in the dark and went to her. We talked for a long time and people cleaned up and left the circle. My shawl got picked up and I did not see it again.

When I realized it was missing, I was heartbroken.  But I was also curious.  Where did it go?  Why did no one find it?  The gathering wasn’t that big and people knew it was mine! Surely it couldn’t vanish. I put so much of myself into it and now it was gone.  What did that mean?

The next day, the survivor pendant I had bought myself midway through treatment fell off and disappeared while I was having a conversation with someone about my future and creativity. It was just suddenly gone. Two things that linked me to deep feelings about cancer – to how uncertain and scared I was at that time – disappeared in 24 hours. Was this a message to me about moving beyond cancer?

Four months passed.  Without my shawl, I started grad school and wrote several well received pieces that were in no way about cancer. I also continued writing my blog about living a better life post cancer, and traveled to speak about my experience as a young survivor and volunteer for The American Cancer Society.  As my three year anniversary approached, I had moved far past the tears in the yarn store, and the prayers and wishes I wove into that shawl have come true for me tenfold.  Life has expanded, and so have my dreams in ways I would have never imagined.

Recently, I was flown into Denver and put up in an expensive hotel so that I could deliver a speech to a group of patient services professionals.  It was an amazing and scary thing to travel alone (with someone else paying for it) to visit a city I have never been to and always dreamed of. It was the sort of scary new adventure in which I would have hauled my shawl with me as a talisman of how strong I was, but instead I wrote about it while I was on the flight.  I was in awe of how far I had come in just three years.

I spent three days in Denver; met a couple friends for lunch, but otherwise as to roam with no obligations.  I walked for miles each day and reveling in my newfound independence and courage. The speech was a success and that evening upon returning to my hotel room, I saw I had an email: “Dear Robyn, sorry it has taken me so long, but I just now opened a box from this summer and found your shawl.  I picked it up in the meadow and had forgotten I had it.  How would you like me to get it to you?”  I sat on the edge of the bed crying as I looked out from the 25^th floor at the twinkling lights of the city towards vastness of the shadowed hills.

The one prayer I knit into that shawl over and over: “Please, let me be more because of this, please let me be stronger, please let me leave it behind and go on to do amazing things” came true.  I thought I needed the shawl to remember who I was, but in fighting the battle found I was the person I hoped I would be.

I have left cancer behind me, and those days and nights of fear and uncertainty are a memory.  But I created deep magic in that shawl, magic that had nothing to do with cancer, and everything to do with calling power and courage and love that I already possessed to me in a deeper, clearer way.  The shawl was a symbol of all that I was and all I hoped to be. If cancer taught me anything however, it was that I am not the external things – a boob or a shawl, pendant or pink ribbon.  I no longer needed these symbols to show my strength, it was already abundantly clear. My future is mine because it is what I chose for myself when I decided I was worth it, not because cancer chose this path for me. I can walk confidently forward and leave the reminders at home .

(Which is exactly where the shawl is going to stay!)

September 19, 2008 was a day that I will never forget.

I was 39 years old, an avid skier and golfer, ran 15 miles or so a week and had been backpacking at a hundred miles most summers. I had a 19 year old daughter, a 16 year old son and a boyfriend of two years. I was getting my life together and discovering who I was as my children grew to adulthood and needed less of me.

I worked in a ski shop and had a bump on my floating rib, low on the right side of my chest, which I mentioned to my Naturopath at my annual July exam. To say she was concerned would be an understatement. I thought it was weird – clearly the bump was from smashing into something at work – a fairly normal occurrence for the only girl working in a warehouse and shop . It was nowhere near my boob. She insisted on a mammogram and ultrasound immediately. I had never seen her so adamant about anything

Even though my doctor said the tests were urgent, it took a couple weeks to get scheduled. At the clinic, I was shaking and anxious and wouldn’t let my boyfriend and parents out of my sight. It was my first mammogram and the technicians turned out to be customers of mine. We talked about skis to put me at ease. Then it was on to another room  for the ultrasound, but the technician focused on my chest, not where the bump was. I didn’t understand why but I would.

I will never forget returning to the mammogram room and seeing the films up on the computer screen. There was my breast – covered in beautiful tiny little constellations of stars – some so dense you could no longer see individual specks. It took my breath away. I knew it was not supposed to look like that. The nurses were very sweet, they talked about calcifications being normal and that most likely that is all it is. We would do a biopsy to make sure, but since I had no risk factors there was” little to be concerned about”. I was stunned.

I tell people it is slow to get diagnosed and once you are, the wheel spins out of control. It took more time to get scheduled for the next test and August rolled on by. I remember nothing of the biopsy in September, which tells me something about my stress level. I had no idea what was going to happen.  I didn’t want to research online.  There was no one to ask questions of or talk to about my fears.

The biopsy was on Monday and the results were supposed to be back on Wednesday – but no call. Didn’t hear on Thursday either. The waiting was horrendous.  As the end of Friday crept up, I called nurse asking for any information before the weekend came. My phone was in my pocket and around  6 it rang.  Heart in my throat, I waved my boyfriend (also an employee) into the backroom with me as I recognized my doctors phone number. My hand shook as I answered. She wasted no time. “I am sorry to tell you this but you have Ductal Carcinoma Insitu. It is non-invasive, but extensive. Your only option is a mastectomy.” There were more words but I didn’t hear them. I fell to the floor. The air left my body. I thought I would faint. I never thought of myself as being that dramatic, but when told you are going to lose a body part, that the rest of your body collapses in sympathy.

How could this be? How could I – an athlete, a health nut, a mom with no risk factors, have cancer?  Why didn’t I have a lump or something that would have warned me?  How could there be so much of it? Am I going to die of this? WHY ME?

I gave myself a month to come to grips with it, something at the time I thought was possible. Come to grips with losing a part of you? Come to grips with having Cancer? Come to grips with who knows what horrible treatments? Now I know – there is way to absorb it, to let it sink in, to come to grips with it. It doesn’t ever seem real. You don’t get to process it. You never return to normal, or the way things used to be. It is often a nightmare, but more often just IS. You do what you need to do to save your life and as I found out, in the end you re-discover what your life really is.

I had loads of support — the pink ribbon industry had done its job well in educating the masses, but unfortunately no one was my age. I had tons of questions but no one to ask. I didn’t want to sit in a room of 60 year olds, as supportive as they may be.  I wanted someone to talk to me about reconstruction and how bad their scars were. I wanted to know how they talked about cancer when they dated.  How was I going to look? Would I ever wear a bathing suit again? Was I going to ever be the athlete I was? What does this all mean and who am I now??

I knew no one my age that had cancer except my cousin Jody. But hers wasn’t going well. She had also originally been diagnosed with DCIS and had a “breast conserving” lumpectomy thinking that would be good enough and wouldn’t leave her looking strange.  But it wasn’t. Cancer returned in her organs and eventually her brain. At the time I was diagnosed she was undergoing a second round of chemo. She was a single mom my age with two daughters just a little younger than my own kids. We weren’t related by blood, but had grown up together. We didn’t talk much during our ordeals, but she told my mom to tell me to do everything I could do and don’t stop. On my two year anniversary I spoke at her funeral.

Cancer took away my choices. That was what was so disempowering. I did nothing to “get this” – in fact, I had done everything right. I ate organic and had been vegetarian for half my life. I had no risk factors. I felt punished for something I had not done. And lucky me, because the cancer I had didn’t usually get this bad, they didn’t really know what to expect and there wasn’t a clear protocol for treatment. I was an anomaly in unchartered territory and we were hoping for the best.

The only thing anyone could tell me is was what wasn’t a problem – the original bump that got this whole thing started. It turned out to be nothing and completely disappeared the moment I was diagnosed. I tell people it was a message from my fairy godmother ….my angels were watching out for me. If I had not found it right then, it would have killed me by the time I did. That is all there is to it.

I had surgery on October 22. Luckily the cancer really was non-invasive and the lymph nodes they took were clear. But the whole breast was full of cancer and I had less than 1mm of clean margin. I suffered horrible, painful and permanent neuropathy from surgery, my body rejected the sutures leaving a gaping hole in my chest for a month and I had permanent scaring from third degree burns that began on day 10 of 36 radiation treatments. Good thing no one mentioned any of this as a possibility because I would never have thought I could handle it.  I was glad to be alive, but the cost was tremendous. Everything was difficult, new, scary and painful. My life was completely different than I ever would have anticipated and I had no idea of what to expect of my future.

About this time I received a call from I received a phone called from a volunteer for an American Cancer Society program called Reach To Recovery. A Patient Navigator at the hospital where I had surgery had asked me (while I was drugged up) if I was interested in talking to another breast cancer patent and I had said yes (what else would I have said at the time??). I had no idea what life was going to be like in another month or two or six, but I desperately wanted to talk to someone my own age that I didn’t have to be optimistic with.  Someone that just knew what this was like without being told.

The phone call was to change my life. I remember where I was when I got the voicemail she called. I remember where I was when I called her back. I remember sitting on the floor crying because she understood. Really understood. Michelle was my age…with a lot of similar issues She answered my questions about relationship stuff, treatment and reconstruction with deep honesty. She shared herself – very personal, intimate and real. She was the only person I ever saw, or talked to, that was my age and a survivor. She made suggestions, talked about her own reconstruction (which she loved) and scars (which didn’t show) and about how one man in her life didn’t handled cancer  (and left) well and the next on did (and they got married). Talking to her made a huge difference to me. She helped me see what was possible for me at the end of all this. I wasn’t alone anymore.  I knew immediately I wanted to make that difference for someone else.

I had no idea until cancer how strong I was. I had no idea who I was. Being told you have a life threatening disease you had no idea you had is terrifying but  doing what you need to do to get rid of it is the easiest decision to make in the world. The journey is often unbearably hard, and lonely. But my story is not horribly unique and that is why I tell it here in such detail.  It is the story of many women who are diagnosed with breast cancer. In this most private and frightening time, we need to know we are not alone – we need to hear that in the end, we will have received far more because of cancer than we have lost.

Because of Michelle , I became a Reach To Recovery volunteer  for Snohomish County  and now am the Reach Coordinator for my region. I also am part of an small call list of  volunteers who contact  women in remote areas with no other resources or for whom their local division had no match. As Reach Volunteers we provide direct and immediate support to women with a breast cancer diagnosis. I cannot stress to you enough how important this is: DIRECT AND IMMEDIATE SUPPORT in what seems to be the worst time of our lives. At so many moments in my own diagnosis, treatment and survivorship I could have used a phone call.  When it came, I was eternally grateful.  I am now that phone call for someone else.

Reach Volunteers are matched as closely as possible in age and diagnosis to the women we call, providing connection, resources and empathy that cannot be gotten elsewhere. Depending on when the patient is provided with information about the service, support can come quickly – often even prior to surgery or treatment. Even when it comes later, we still talk about long term physical and emotional self-care as women embark on the next phase of their lives as survivors. We answer questions about our personal stories and treatment, give encouragement and listen to theirs.  We have access to resources about treatment and reconstruction options, financial assistances, rides, and more.

I generally speak to women who are between the ages of 30 – 50. A Reach call for me starts off something like this:

“Hi, my name is Robyn and I am a Reach to Recovery volunteer with The American Cancer Society. I understand that you have been recently diagnosed and wanted to speak to someone that was you age about what you are going through – and that would be ME! You can ask me anything, we can talk about anything, I am here to be that been-there-done-that-person. Nothing is off limits. How ARE you????”

The conversation evolves from there. Sometimes they seemingly have had a list of questions they’ve waiting to ask someone. Sometimes they just need an ear to listen to how mad or scared or frustrated they are. Sometimes they cry, always we laugh. I can usually hear a cup of tea, a glass of wine or a can of beer being sipped. Often they are cooking dinner and I hear their family in the background or wait while they deal with a kids’ crisis. But I have been there too.

These women are UPS drivers, garbage truck drivers, business owners, dance teachers, sled-dog mushers, stay at home moms, firefighters.  They are active and have years and years ahead of them in their careers and families. They want to know how to move from disease to wholeness again.

We talk about diagnoses, how we don’t have time for this and frustrations over employers, friends, family and lovers. We always talk about treatment and meds  - always stressing that my story is my own and each woman is different.  In the first 5 minutes of every conversation we always talk about reconstruction. (Which I did not chose to have) .Always they ask how I am doing — timidly, with a question mark, and I can hear their relief through the phone when I say I am doing great. There is laughter and anger, cussing and tears as we talk about fears, love, energy, work, intimacy and families. And about WHY. After an hour – sometimes even more – I hang up after telling them I am completely available to them any time they need it –  in a day, a month or a year –  I am here. Sometimes they call out of the blue weeks later or I run into them at an event. These women are always relived to talk to someone that speaks their language, understands their issues and that they can be honest with. It makes a difference.

I will be honest – I am not always the stellar volunteer and sometimes it is hard to make those calls in the middle of my grad school work and fulltime day job. But when I hang up I ALWAYS feel like I just received a gift – not that I gave one – I RECEIVED one. Making a difference in the lives of women who are scared, tired, frustrated and worried,  MATTERS. I was them not very long ago. Because a volunteer stepped forward, I began to believe that there really was HOPE for a better life after cancer. When I was “trying to come to terms with it all” there was someone there to talk to. Because someone shared who they were with me, I became an inspiration to others.

I encourage you to be an inspiration. As you actively promote ACS patient services like the Reach To Recovery  you change lives. In some cases, connecting someone with a volunteer while they are in the crisis of finding out they make die, reminds them that they still have a life that is worth living.

Reach To Recovery is just one of the many patient specific programs ACS provides. My father is an in-hospital volunteer through the Cancer Resource Center at Providence Hospital in Everett, WA. The Resource Center (an American Cancer Society funded, staffed and trained center) at Providence Regional Cancer Center is an 800 sq ft. room on hospital premises complete with a fireplace and couches and an across the lobby coffee stand. The CRC provides information on all types of cancer and related treatment/medication information, newly diagnosed patient gift bags (hear love bags), wigs and prosthetic fittings, hand knit blankets and hats, scarves  and scarf tying classes, available to patients and their caregivers FOR FREE. Rides to and from treatment can be arranged and the Everett area ACS Road group has 25 + drivers.  Gas cards and hotel stays may be available. Cancer specific support groups and classes are also offered for minimal cost on everything from Body Image to Meditation and Yoga.

Dad spends a great deal of time in the chemo lounge at Providence Hospital in Everett, WA. As a prostate cancer survivor himself, and the father of a breast cancer survivor, he is in the unique position to speak on very personal and intimate terms with patients undergoing the two most common types of cancer. He knows the nurses in the lounge and spends hours each week, wandering through in case someone is in need. He spends much of his time listening to patients talk about what they are going through, providing support resources for patients and their families while they are undergoing treatment. I know for a fact that many of the patients he has spoken with continued their treatment plans because my dad was waiting for them to show up, and if they were late – well, they knew he would call them. Having someone to talk to is important to all of us but when you are afraid, sick or in pain, is especially important to have access to someone who has been there, and has come through the other side. We give hope.

My personal platform is that every woman with a breast cancer diagnosis needs to know that they have the ability to speak to someone who has been in their shoes. I would love to see women getting phone calls BEFORE their treatment, instead of after so they have someone to talk to about their fears from the beginning.  This means we need to develop close connections to doctors and hospitals so that we can get the word to newly diagnosed breast cancer patients that a Reach To Recovery volunteer is available.  And there needs to be a dramatic increase in volunteers like my Dad (although please don’t clone him – I don’t think I could handle it!).  We need survivors to be able to speak with patients at the hospitals while they are undergoing radiation or chemo, so everyone has access to a survivors message of hope and a better life despite cancer.

We must also increase the number of volunteers and actively seek out volunteers who are able to give of themselves. They need to know that it takes only a couple hours of time each month  to change a life – and they can do it their jammies! People think of volunteer work as a huge, rarely convenient,   long term time commitment. Reach is not like that. Most women would give be willing to talk to someone once every month or two if they knew how little it took to give so much. This is not a huge commitment but the result of our efforts is immeasurable.

We have a particular shortage of volunteers  who are outside of the median age of diagnosis. We need to recruit women in their 30’s and 40’s to share the unique concerns of young survivors. ACS needs to put a face on young breast cancer survivors who feel particularly alone in a culture that says cancer happens to your mom or your grandma not you.  My Dad speaks to an alarming number of young men with testicular cancer under the age of 25 who have NO ONE at all to speak to about their diagnosis. It is terrifying to be young and fighting for your life when you are already trying to grapple for control as an adult.  Young survivors concerns are unique and their approach to treatment and to long lives as survivors is also.

Anyone with a cancer diagnosis,  or who has journeyed the road of survivorship as a support person, is in great need  because of their unique understanding the  tremendous toll cancer takes on us all. Non-survivors can understand, but it the person who has really walked that path has more “street credibility” and immediately is able to understand and respond to a patient’s emotional needs.

We have an opportunity to make a huge impact as individuals. When it was determined that the bump on my chest that started it all was nothing, I saw it as a sign. I was saved for a reason, and I believe this strongly. I must make the most of my time here. Because I have walked a hard road, I have great empathy for others who must walk it. Because it is easy for me to speak out, I feel I must because so many have no voice. Because you have chosen to do the work you do for ACS, you must also feel similarly and I thank you for your service. Thank you for giving me, and so many others like me hope. Know that what you do matters to us profoundly.

It is often hard to feel our day to day jobs feed us no matter what they are. We burnout, get lax, forget stuff, and go about our work day a bit grudgingly. But I am here to tell you that WHAT YOU DO MATTERS at the deepest heart level to the women that receive a phone call from a volunteer like me. By your efforts to actively promote the support services of The American Cancer Society, patients are given hope. They are given time in which they feel the matter. They are able to share their concerns and their triumphs with someone who is in the unique position of knowing exactly how they feel. They have some of the weight of being a patient or a survivor alone in the world removed from them as they realize that people really do understand and care. They are, heard, recognized and buoyed up. They gain hope that their lives will not only continue, but they will be better despite cancer. What we do keeps people’s hearts alive in the most difficult moments of their lives. There is no greater gift to give.

Thank you for making a difference.

I am studying Creative Writing in a low residency program that meets every semester for a week at notoriously haunted Fort Warden in the northwest corner of Washington State. For whatever reason during this particular residency the ghosts were especially active. Over breakfast one morning, a woman was relating the story of her previous nights haunting and wondered what to do about it.  “Just tell it to go away.” She looked at me in surprise “That works?”  Shrugging I reply, “It might. They are people – just dead people. Tell them you aren’t interested and to leave you alone”.  She walked off muttering, “Huh. Like a bad date….” She was shocked – since the supernatural was so far out of her normal experience, it  didn’t occurre to her that she might have a choice.

Later, I was in a circle where big energy work was being done and there was a lot of excess “stuff” flying around. Even though I kept grounding myself, I could hardly sit still. When the man leading the session got to me, the first thing he said was, “You know, you can choose how much to receive…”  As soon as I said ENOUGH, my agitation was gone and I was calm and clear.  Duh, of course I had the option of saying no!  How did I forget this?  I don’t have to be a sponge for anything – even positive things. Even though something is winging its way through the ethers toward us, we can still choose.

I get to participate in my reality.

In fact, I get to create it.

I have been experimented with this. While at my residency I realized that the job I was temporarily laid off from  was far too stressful to continue fulltime while in grad school. I strategized about how to work fewer hours and make my job less stressful, but by the time my boss called me to come back to work, I had decided I was done. The problem was I couldn’t quit or I would lose unemployment benefits. I wasn’t being lazy, but my priority was to have energy to write and it was in conflict with this particular job and company. Through a series of events that had nothing to do with me, after 8 years they decided to hire someone else. It was as if I had stated what I wanted to have happen and created it. The best part was, that since I had stated what I wanted, not just what I didn’t want, I immediately got a job that better fit my needs for mental health and school.

These days even “normal” people are well versed in the power of manifestation. The language sometimes gets a little woo-woo, but in reality it gets back to that skiing/golfing thing (see earlier post  “I am Committed to this…I think”):  we hit the target we are thinking about, even if it is not really the one we wanted to hit. Too often I have said what I didn’t want  (I don’t want to hit that tree) instead of what I did want  (I want to hit the green) . My focus was not on what I wanted, it was on what I didn’t want.  It seems like up until recently, I was always trying to manifest things as a reaction to something I didn’t want to happen in the first place – not because I was stating what I wanted to start with.  I was always running behind the bus instead of driving it. I have a great quote above my dresser:  “Remember to use positive affirmations:  I am not a dork is not one of them”. It is a reminder to me to watch my language and my thoughts.

I am learning that I can choose the direction my life was to take instead of being along for the ride.

I made the decision to go to get my Masters of Fine Arts in Creative Writing late one night over a bottle of wine. Really, that is about the truth of it. I had thought about grad school before – in Psychology – and had been accepted once. However, it didn’t work out and every time I tried to get it going again, something happened. I thought that Psychology was the logical and responsible thing to study given my interests. It seemed rather unimportant that it wasn’t my passion. Even though I had been teaching creative writing workshops in the evenings after my counseling practice and integrated writing into my therapy sessions, the bell never went off that maybe I was going in the wrong direction. Writing had always been my love but  it seemed pointless to pursue, because what could possibly come of it?  I tried to be a “responsible adult” and struggled through all the “adult” struggles in order to pay the bills.  It wasn’t a whole lot of fun.

First and foremost cancer teaches you that there is no time like the present. So I began to write regardless of how “irresponsible” it seemed.  It was all for fun, right?   Based my blog’s tiny successes, I decided to learn more since it seemed I might actually be good at this. I found Goddard online just a few  weeks before the admissions deadline, got accepted and got a small scholarship.  Wow….someone read not only my application packet and decided I was good enough (or that I REALLY needed the help!) but someone else decided I was good enough to throw some money at!! Maybe I really could do this….

Every time I have tried something new and attempted to do the “adult” thing it has fallen apart.  Surely, this leap into complete irresponsibility and self-indulged ego-centric dreaming would also cause me to crash to the ground. The week before I was supposed to go, I waited on pins and needles for something to happen that would keep me from going. Getting in my car, I thought I might get in an accident.  On the ferry ride over I worried it would sink.  I thought maybe I would get lost or sick on the drive to the Fort. But I arrived safe and sound and here I am, 2 months into it, successfully churning out well-received work and still very much alive.

The funny thing is that ALL obstacles were removed when I decided this is what I really wanted to do. This has NEVER happened to me before. In all these years of asking for a sign from God telling me I was on the right track, no matter how hard I worked, suffered or sacrificed I never heard a peep about if I was headed in the right direction. Now I step into the ultimate act of selfishness by spending more than an entire year of income to learn how to write better with no certain pay-off  simply because it makes me “ happy”,  and suddenly God is in a neon jumpsuit with brightly lit beacons guiding me down the runway to my dreams.

Part of me wants to shout – “Where the hell were you when my children and I were hungry?  Couldn’t you have made life easier then????”  But I wonder if it was me making my life harder than it needed to be because I had strayed so far from what I was really supposed to be doing.

A friend and I were talking about this and I heard myself say, “As ‘spiritually progressed’ people trained in manifestation, we set out goals and intentions and announce them loudly so that the universe will hear what we want and give it to us. We ask for guidance and help and proof of Spirit’s existence while we bumble around. We think God doesn’t listen when we don’t get whatever it is that we think we need. Or we think we are on the wrong path and change directions since if it is not working out, clearly it is a ‘sign’. Or we think that if we work hard enough our struggle with make everything okay.  We keep reacting to our failures, trying to figure out what the right thing to do is instead of what the thing we really want is. We wonder why in the world God is not listening; we ask if s/he could PLEASE give us a sign. We wonder where we went wrong.

But maybe, just maybe, a long time ago we whispered out hearts intent and the universe DID listen. And maybe all along Spirit has been trying to give us what we asked for. We have forgotten our deepest desire in the middle of all the other things we think we ought to have or be doing. But God didn’t. And She has been waiting all this time to help us get there.”

I never did the ONE thing that I knew made my happy because I was afraid to fail. I was afraid the dream was not worth it, that I was not worth it, that it was selfish and that it didn’t matter.  I was afraid to do what made my heart sing, because that didn’t seem like a good enough reason to do something. Having cancer showed me that there is no time to worry about any of that – the only thing we can do is throw our dreams to the wind and see what happens.

For the first time in my life, I am making the choices, not simply reacting to the spinning of the universe around me. It is a big difference to choose instead of to react. Choosing is an act of believing that you are worth the effort to pursue something. Reacting is the “shit happens so how am I going to deal with it this time” mentality. I have been far more guilty of the latter than the former.  And I am remarkably good at not only dealing with “shit that happens” but making some pretty interesting things out it! But that is not how I want to live my life any more.  I want to choose.

By choosing to put myself first in line for what I ultimately wanted – even when I was full of doubts about the worthiness of it – I created the potential for it to happen. My dreams are happening. The target that I want to hit is to write and to make a difference in people’s lives.  I don’t know exactly what that looks like yet, but I am trusting that things will unfold along the way that will give me more knowledge to make more choices and better define my direction.  I am not going to let my own ghosts – or anyone else’s,  get in the way of my focus on how I want my life to go. That doesn’t mean that every day or every event, works out well. But it does mean that I am not spending my life reacting to what I don’t want. I am picking my target and keeping it in mind the whole time – not thinking about what can go wrong.  And I get to choose – it is not chosen for me by anyone or by misfortune or chance.  It is my decision.

Obviously, I am only beginning to see how this new shift in my perspective changes my life and creates opportunity and happiness for me.  I don’t know if it works, any more than I knew that telling a ghost to go away would work.  But it seems like it should…..our experience is our reality after all, so if I shift one, the other must follow.  I will let you know!!

Only July 25 Mom and I were at tea celebrating my birthday and return from my first graduate school residency (which is why I haven’t written here in so long) . My phone kept vibrating but I happily ignored it figuring it was birthday wishes from my friends.  I checked as I got in the car and saw they were all from my doctors office – never a good sign.  First message was benign…please call. Weird, my annual test results were all fine.  Second message: “Marty wants you to come in and have an ultrasound and an EMB”.  My heart stops for a moment – what the hell is an EMB???   I dial and wait on hold for the receptionist who answers sounding bored and who knows nothing. With panic in my voice I firmly tell her I am a cancer survivor – I cannot wait for more information. She immediately becomes my advocate (partly I am sure because I sound like a teenager on the phone) and runs off to ask questions. Returning, she still has no idea what an EMB is but transfers me to Imaging for the ultrasound appointment. Trying to stay calm, I figure if EMB isn’t defined in my chart notes maybe it isn’t such a big deal.

I don’t tell the receptionist at Imaging about cancer (though I am certain if I pulled the cancer card again it would have been rushed) and she makes the appointment for the end of the week. I am trying to play it cool – no biggie – just some tests. While I am talking to her the phone vibrates again and I miss the call.  I check my messages and it was my doctor – DAMMIT!  She has left a more detailed message: after consulting with the other doctors they have determined my symptoms are abnormal based on my test results and I need to get in ASAP and make sure nothing is wrong.  Ultrasound first, followed by an EMB….Endometrial Biopsy IMMEDIATELY.  It is very important. She hangs up.  I call back panicked again…but she is gone for the night.

The nice receptionist I spoke with earlier schedules the “procedure” for a week later (NOW it is all in my chart!) and she tells me the instructions say I have to take 600mg of the pain meds of my choice before I arrive. That is when I start to cry. She has no idea what kind of hell I am in that moment…. I am no longer a rational human and can’t breathe any more.  I am driving down the road, talking to someone who doesn’t know what I have been through talking about yet another fucking scary invasive procedure that could be goddamn cancer. AND I SHOULD PLAN ON IT BEING PAINFUL! My body has been already been tortured so much and I thought it was done but instead they are poke and stab again and I should plan on pain. I can’t stand planning on pain, I can’t stand waiting, I can’t stand not knowing, I can’t stand everyone’s sympathetic tone of voice.  I cannot do this.

Welcome to being back at the C-word.

“Biopsy”  repeats in my head….biopsies are bad….3 years ago nearly to the day I heard the same message from a different doctor….”you must have a biopsy… chances are everything is fine but we just want to be sure.”  Everything was NOT fine.  Not at all.  And now three years later I listen to the same words and am supposed to be calm????????????????????????

I am in shock. I call my boyfriend and tell him that the doctor wants me to have an ultrasound and biopsy. There is a long silence before he says “oh”. We are quiet together for a while and then talk about birthday dinner plans. He didn’t know that I have been having problems that would warrant any tests and I feel oddly guilty for not having told him. But he is so estranged from my body that I don’t want him to know about its little oddities unless absolutely necessary.

I call my mom. “Well. Shit” she says. And I know she will fall apart when we hang up the phone. That is what she said when I told her I had cancer.  At least that is what I think she said. I can’t really remember anything but falling to the floor and how crystal clear everything looked.  I had cancer.  Do I have Cancer again?  Am I going to lose my uterus too?  Was losing a boob not enough payment for whatever shitty karma I had???

The next hour is spent in phone calls back and forth as my parents both call every 15 minutes to make sure I haven’t laid down in the road or stuck my head in the oven. I don’t but I can’t stop crying and have given up on trying to make this morning’s makeup last until dinner. Oh — dinner —  Shit.

I don’t want anyone to know.  But I can’t be alone with this. How can I go celebrate my birth when I might be dying??

I invite friends to join us as a distraction – we are going to the Irish pub in town for music, dinner and to celebrate life the way the Irish know best… by drinking. It seems somewhat fitting to go to an Irish pub after the bad news follows on the heels of so much fabulousness at grad school. They know something about luck – even bad luck.  And if I need to fight …well that is in my Irish blood as much as being a cancer survivor already is too.

So off to redo my makeup and put on a happy face. I will have a pint or two. I can’t do anything about this for a week.  No sense ruining my birthday.  And yet the tears…STOP IT! Goddamn it. Why don’t I have waterproof mascara?

The next day I wake up unusually early.  How do I get through this?  It occurs to me that IF I have cancer again then in another week the machine’s wheels are going to start spinning and I won’t be able to slow it down until it is all over.  This I know now. And how do I want to spend my last week of “freedom”?.  Seems perverse to rationalize time this way, but it is true.  Before BC I thought I was in control, that there was time.  I thought I knew what it was like to be scared, I thought I knew how strong I was.  I had no clue. Even after BC I thought I knew what scared was like….but a phone call changes everything.  The line from the Mat Kearny song repeats in my head…“we are all one phone call from our knees”. 

I feel like I am assisting at my own trauma scene.  Stand back, observe, take it slow, stay calm. Time has slowed down to increments of check in: “How are you now?  And how about now?”.  Don’t give in to the panic…slow down the tears….they are only going to get in the way of an accurate information about the severity of the scene. Assess, acknowledge, distraction, humor, then back to assess, acknowledge, distraction, humor.  That is what I was taught and I am my own patient.

So here I am again, back in the land of endless phone calls and doctors visits.  This time the ante has been upped because the potential of a second cancer is a far more dangerous  statement than the fluke of a first. I feel like the first cancer is bad luck, the second…well you are kind of screwed – you are a cancer breeder.  And the irony of it is…this cancer potential may be a direct result of the treatment for preventing another cancer potential. There are no good choices. The doctors and nurses are sympathetic, they say “you are so young” in the tone of ‘we are so sad for you’ even when they are trying to convey ‘you really shouldn’t worry because your age makes it unlikely’.  But I have been told that before and look where we are.

So here we are, a week later and I am still waiting on the results of the biopsy. (Which was horrible and painful and something I never want to repeat again). Somewhere in the past week things shifted in me.

I woke up one morning and realized that just because this path looks an awful lot like that path they are NOT the same.  Just because things were bad once does not lock them into being bad again. In fact, all this recent fabulousness with grad school goes to prove that you can jump the grooves in the record and create something completely new.

And the other thing I realized (thanks to my father who I really do occasionally listen to) was that I do not have to be alone in this. I do not have to play brave or act like it is routine or care-take others so that they don’t worry. I get to share my fears and I am not less for doing so. No one thinks I am a pest when doctors are mentioning cancer again in whispers. I have a community for a reason and they love me in my strength and weakness. And so I shared what was going on – and I didn’t even preface it with “it’s probably nothing but…” I said I was scared because I was and they gave me a place to lean until I could be less scared.  (thank you Kelly and Theresa!)

This blog piece is something I wrote a week ago and never showed anyone – nor did I plan to (my writing is like hiccups – I don’t know WHY I do it but I can’t stop it). I was afraid that my fear and reaction to this was too over the top and that it really wasn’t worth sharing. Until I saw Katie’s post “Nothing Is Ever Simple”  from her blog Uneasy Pink.

Katie was going through a very similar thing at the same time.  Everything turned out fine but she was scared and felt alone and angry.  She reached out to her community and it responded – she was stronger for it and so were they.  We are never alone and we should never think that we ought to be.

I am learning, bit by bit in my advocacy work and in my writing that as I bare more soul more, and am honest my own struggles and success, I reach other people who then gain courage to be wholly themselves and reach out. And as my teacher says:  the ripples go out…………..