Where Do I Go From Here? Washington DC

img_6061Today is the one year anniversary of this blog. I started writing because I wanted to do something, anything, to change the narrative surrounding breast cancer. October is a hard month for me as I was diagnosed in September 2013 and started treatment in October 2013. The complete disconnect between what I was experiencing and the big pink parade was overwhelming. Looking back What I didn’t know is the tip of the iceberg. Blogging was a way to share what I was learning and gave me a place to focus my anger.

This year I want to do more. I am taking a leap of faith and flying out to Washington DC for the Stage IV Stampede on October 13, 2016. I will be participating in the march and Die-In, then visiting our congressional leaders to advocate for more funding and support for metastatic breast cancer. I hope you will join me either in DC, at one of the regional events or by donating to one of the participating organizations – Metavivor, MetUP and Living Beyond Breast Cancer

I will also be writing about what I am learning as I prepare for the event, and about my experience in Washington. I have never been involved in politics and haven’t been to DC in years. I became a stay at home Mom in 2002 so my working “game face” is pretty rusty, though I’ve got the Mom raised eyebrow down pat and a pretty good “teacher stare”. Fortunately the organizers are providing information and classes to help me prepare and several friends from will be there with me. We will once again be Out Living It Together – another “Challenge By Choice”. I can’t wait!

Posted in Advocacy, breast cancer, MBC, outlivingit, pinktober, StageIVStampede, Uncategorized | Tagged , , , , , | Leave a comment

I’m a Poet – Who Knew?

I took a break from blogging to take a writing class over at LBBC.ORG. I thought I would be writing essays, but it turns out my instructor is a poet. I haven’t written poetry since high school, but found out I really enjoy it. After the class LBBC asked if they could post some of my poems on their blog. So far they have published three of the five I submitted (links below). I highly recommend the class Writing The Journey. I was waitlisted the first time I applied – well worth the wait! I’ll be blogging again starting next week as we head into Pinktober. I’ll also be in Washington DC on October 13th for the #stageIVstampede.  This event is sponsored by METUP, Metavivor and Living Beyond Breast Cancer and includes a Die-In and meetings with congressional leaders to advocate for more money for research and access to care and treatments for metastatic breast cancer.  Please consider joining us!


Her Name Is Gladys

Normal Has No Place

How To Interact With A Bald Person

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First Descents




In June 2015 I was blessed to be given a kayaking trip by a wonderful organization called First Descents that gives free adventures to young cancer survivors. I knew it would be life changing, but I had no idea just how much it would change me. My FD experience inspired me to write and paint again. This blog is a direct result of my time spent with FD. It costs about $1000 cash for each participant in addition to corporate sponsors and volunteers. This weekend I will be climbing with my children to raise money so that another person affected by cancer can have the same experience. I would really appreciate your help! Every donation makes a difference!

My fundraising page is HERE.  As a thank you I will be painting custom watercolors for my top donors and one donor chosen at random. I will also send an original piece to every donor up to 20. If I get more than that I will do a larger work and send 5×7 prints to all donors and do custom pieces for the top three and one randomly chosen donor. Even if you can’t make a donation at this time, I could really use your help. Please share my fundraising page on FB and other social media. I will post some of my artwork at the end of this post and have links on FB for my portfolio that are visible to anyone who friends me there (Trip Griffith).  Please help spread the word about this fundraiser and about this wonderful organization. If you know anyone who qualifies for a First Descents adventure (affected by cancer ages 18-49), please let them know. If anyone wants to talk to an alum to find out more, please feel free to contact me at tripfd40@gmail.com.


Here are a few of the things I have gained from my FD experience that I would love to give to someone else:

  • The most amazing group of friends in my FD tribe. My fellow campers, the volunteers, our river guides – some of the kindest, loving people I have ever met. Many have dedicated themselves to raising awareness, funding research and supporting those affected by cancer. I stand in awe of their dedication and strength. I made lifelong friends who love me, inspire me and support me and a community of people who get what I am going through without me even saying a word.
  • I learned that even after chemo, radiation and surgery, I can still push my body to the max and it won’t completely fall over. I now have the confidence to push my limits as I continue to heal from treatment. If I can go down a class III rapid in a kayak, I can do anything. And if I can do the second half upside down and backwards and come out laughing, there is no challenge I can’t meet.
  • I reconnected with my artistic side. I’ve always loved to create through writing and art. But somewhere along the way I lost my connection to that part of myself. My FD experience not only gave me back my inner writer and artist, but gave me the confidence to put my creations out in the world.
  • The first time my instructor rolled my kayak I was stunned. I felt at home in the river. As a survivor of childhood abuse, I had to lock away and protect  parts of myself during childhood. I had several years of therapy and treatment for PTSD and thought I had peeled away all of the layers, but being on the river opened up a door I didn’t even know existed. I got back that girl who loved the water, who connected with the river and felt at home there. I got to spend a whole week in one of my favorite places on earth with people who understand that connection and love the river as much as I do.  I even got to jump off a bridge and have video of it to show my kids.
  • I made the transition from cancer person to a person who was affected by cancer. After a cancer diagnosis, your whole life revolves around treatment. Everyone around you is focused on your illness. When you lose your eyelashes and eyebrows during chemo, you wear your disease on your face. People look at you with sympathy, or like they know you are practically dead. I even had people burst into tears and walk away just from seeing my face. With my FD tribe I was treated as a person, not a patient. I didn’t have to explain anything. Everyone knew what I had been through, many had experienced it themselves and we didn’t need to talk about it unless we wanted to. I could just be me. FD reminded me that I am so many things – mother, friend, artist, writer, wife, adventurer, nature lover, kayaker (who knew?). Cancer is something that happened to my body, but it isn’t who I am.


Please help me give the FD experience to another young person affected by cancer. Any donation would be greatly appreciated. Even if you can’t donate, please share my campaign through social media. I’ve posted a few of my favorite paintings on this post. My portfolio is available on FB to anyone who friends me “Trip Griffith”. I’m not a pro, but every painting comes with a lot of love thrown in. So far I have attempted pet portraits, action shots, landscapes, sunsets and even a closeup portrait. My top donors will receive a custom painting of a subject of their choice. And every donor has a shot at a custom painting.  Please consider a donation!

Thank you!!!

Trip (Katie) Griffith

The first set of paintings are with water color pencils, Inktense pencils and watercolor crayons. The second set are water color paint. All are done on 5×7 watercolor cards. The people and animals are inspired by photos. The landscapes were done while on vacation and inspired by the view.

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Destination Unknown…

My assignment today for Writing101 is to use a quote for inspiration.


“The journey not the arrival matters.” – T. S. Eliot

While searching for inspiration for a tag line for my blog I came upon some great quotes about travel. My nickname “Trip” has a lot of different meanings but one of my favorite is “a journey or a voyage”. I tend to see my life as a crazy unpredictable adventure – sometimes awesome and sometimes not so much, but definitely never boring.  While I can chart a course I can’t always control what will happen along the way and often end up somewhere completely unexpected. I’ve learned that the journey and what you learn from it are often much more important than the destination.

“A journey of a thousand miles must begin with a single step.” – Lao Tzu

As a child I was just trying to survive – a rowboat in a hurricane, huddled in the bottom of the boat and hoping for a break in the storm. As I got older I began to see a glimmer of light on the horizon. I realized that my reality was not the norm. I learned so much from people who passed through my life and gave me little glimmers of hope without even realizing it. When I reached my teens I grabbed the oars and started rowing towards the faint light in the distance, towards my future. As I lifted my eyes to the horizon, I realized there was a great big world out there to explore that I had never noticed because I was too busy just trying to survive.

“The world is a book and those who do not travel read only one page.” – Saint Augustine

My first experience traveling alone was at the age of 17 flying to visit a university. What I remember the most is the feeling of lifting off the ground and soaring over the clouds. The feeling of freedom and safety overwhelmed me. At the time I probably wasn’t able to verbalize it, but deep down I knew that I would be able to break free and make my own way in the world without the chains of my childhood. That experience fueled my love of adventure. I began to see the world as a fascinating place full of new things to learn, people to meet and places to explore.

“I don’t know where I am going but I’m on my way.”

– Carl Sagan

When I was younger I was pretty shy and soft spoken. A childhood friend said he remembered me as the shy girl in the back of the room always reading a book. Somewhere along the way someone taught me to act “as if”. Act “as if” you aren’t scared and eventually you won’t be. Act “as if” you are as confident as someone you admire and eventually you will be too. I tried it out with smaller things and as I realized it worked, became more daring. I learned to be comfortable traveling by myself. I realized I actually love exploring new places, meeting new people and even eating at restaurants on my own.

“Not all those who wander are lost.” – J.R.R. Tolkien

As an adult I’ve lived all over the U.S. and even traveled internationally a few times. People across the globe have a lot more in common than they think. We love. We make mistakes. We want a brighter future for our children. We laugh. We cry. We want to make the world a better place. Yes, there are people in this world who choose to create chaos, who lack empathy, who do horrible evil things. I learned that very early in life, but I believe they are the minority. Most people are trying to do the right thing, to bring a little light to this world. They aren’t perfect. None of us are. We are imperfectly perfectly human. I wish everyone took the time to travel and get to know people who are not like themselves. It is difficult to hate someone when you know them personally, have sat at their dinner table, met their friends and family and learned about their lives.

“Once a year, go someplace you’ve never been before.”

– Dalai Lama

I’ve also marveled at the beauty of our world. Watching the sunset over the ocean, feeling the wind on my face as I enjoy the view from the top of a mountain, admiring the beauty of a tiny flower or seashell. I feel the most grounded when I am outside enjoying nature. In a world full of technology, I wish everyone had the chance to unplug and engage with Mother Nature. It is easier to dismiss news stories about how we are harming our own natural environment if you don’t have personal experience with the world we stand to lose.  A forest you have walked through is more personal than one in a photograph. A river you have paddled is much more personal than one seen on the evening news. The ocean is so much more powerful and precious when it has washed over your toes.

“A journey is like marriage. The certain way to be wrong is to think you control it.” – John Steinbeck

Somewhere along the way I upgraded my rowboat and no longer have to franticly paddle. I picture myself in a beautiful sailboat big enough to have a warm dry berth for sleeping, a motor to help me navigate when the winds aren’t going my way and plenty of supplies for my journey. I’m still floating along at the whim of Mother Nature. Life isn’t all calm, clear water and smooth sailing. I’ve had storms, high winds and waves. I’ve been knocked off my charted course more times than I can count. My goal is not to try to control the things that are far beyond my reach. I want to make the choices that are mine to make and then enjoy the adventure. I know that after every storm, the sun will eventually rise, the clouds will part and once again I will enjoy a bright sunny day. In the meantime I admire the beauty of the clouds and dance in the rain.

“Travel is fatal to prejudice, bigotry, and narrow-mindedness.”

– Mark Twain

My wish for you – that you will step out of your comfort zone and seek out adventure. You don’t have to do anything crazy or be anyone but yourself.  I’m not an athlete or someone you read about in a magazine. I’m a middle aged, out of shape mother of three. All of us can seek out new experiences even in our own backyards. Find a nature preserve or park near your home where you can take a walk and enjoy the natural world. Take that class you have always thought about – art, music, writing, martial arts – anything you always wanted to learn. Explore a different part of your city or a nearby town. Eat at a restaurant that serves a kind of food you have never tried. Smile more. Introduce yourself to new people. Get to know people who seem very different from you. Listen to what they have to say. Sometimes I think we get stuck in a comfortable pattern not realizing that too much routine narrows our view. We need to step outside our comfort zone and engage with the broader world around us.

“A journey is a person in itself; no two are alike. And all plans, safeguards, policing, and coercion are fruitless. We find that after years of struggle that we do not take a trip; a trip takes us.” – John Steinbeck

Two years ago I was hit by an unexpected storm that left me huddled below deck just hoping to make it through. I had to turn inward and focus on myself and my family. I didn’t have the energy to even think about trying anything new. As the sun slowly crept over the horizon and the clouds parted I realized I had been thrown so far off course that retracing my path wasn’t an option. I had weathered the storm, but the storm had also weathered me. I was given an amazing opportunity by an organization called First Descents. They offered to send me on a kayaking trip with other people my age who had been affected by cancer. They helped me regain my zest for life and figure out how to navigate the new water of cancer survivorship. I’m now back at the helm but I’m not really charting a course for a particular destination. Just being out on the water is more than enough. I may choose a destination eventually, but for now serendipity guides me. I’m not sure where I’m going, but I’m definitely on my way. As First Descents would say – I am “Out Living It”.

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Who Are You? – I Need Something Better Than “The Internet Ate My Homework!”

IMG_2741 (1)

Adventures are a lot more fun when you share them with your friends…….

I have felt the urge to write for a few years and dabbled a bit hear and there in journals and on my computer. I started writing about my past so my children could read it one day. But I never really took off. Then a little over a month ago I woke up one morning with a fully formed plan to get me through October – Breast Cancer Awareness Month.

My plan was to write about various breast cancer topics publicly using my river name (Trip) on Facebook. I think I lasted about 2 days before I realized FB was driving me nuts and I needed a blog. I launched this blog and slowly but surely added pages. My goal – to get what was swirling around in my head out onto the screen. I didn’t know if anyone would ever read it, but it made me feel better to get it out there.

Now I am taking a couple of blogging courses and I need help with my homework so I’m following my kids’ lead and asking the internet for help. My assignment today is to write about my target audience. The problem – I don’t really have one. I never thought about it. I’ve did my IRL friends know I am blogging, but very few read my posts. However a lot of people I don’t know have been reading. I’ve been getting hits from around the world and they aren’t all bots! So if you have a minute, could you tell me a little about yourself? Where are you from? How did you find my blog? Do you have a blog too? Any suggestions or comments?  I’d love to learn more about you!

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Dive In

Another post for my class – this one inspired by a single image.


Life is too short to be huddled on the dock shivering and hoping for the courage to take the plunge. Courage isn’t the opposite of fear. Courage is fear’s companion. Courage is looking fear in the eye, nodding in acknowledgement and leaping forward hand in hand. Fear by itself can paralyze. Courage alone can kill.  Together fear and courage can fuel your dreams. Are you going to contemplate your future on the dock or swim towards it in the water? I’m diving in. Join me!

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Another assignment for my blogging class – write something with a one word inspiration. Late night free stream of consciousness produced this. Added pics this morning so I could play around with formatting.


Hope is

a firefly in the darkness

the blazing sun in all her glory

a twinkling light you can barely see somewhere off in the distance

a single flower that survives a terrible storm

a whisper, a word, a shout

a grain of sand





surrounds you and fills your world

wraps you up warm and snug like a favorite blanket

slips through your fingers and falls at your feet, shattered and broken

twinkles in the dust at your feet

hides in the shadow of fear but never leaves you




a seed full of life in a desolate landscape waiting for the rain

a garden, sprinkled with laughter, watered by tears, warmed with love

a rainbow on the horizon spurring you down the road

a breath of fresh air carried on the wind ruffling your hair

a vision for a better tomorrow







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Twitter Makes My Head Hurt…..

For the month of November I’m taking a couple of online classes about blogging. Topics will probably be all over the place depending on the days assignment. Today I am creating a post with a list of things I’ve learned.

What I have learned @tripgriffith:

  1. Twitter makes my head hurt. Remember the kids in elementary who raised their hand and danced around trying to get the teacher’s attention? They are all on twitter.
  2. Twitter lists are like noise canceling headphones. You know everyone is still jumping up and down saying “Pick me!” but you don’t have to listen to them all at once.
  3. Twitter Analytics is not very good at math but it makes me laugh. As you can see from this screen shot I started with a negative number of followers before I even opened my account and according to Twittermath 31 is more than 33. Screen Shot 2015-10-27 at 10.33.47 PM
  4. Twitter marijuana groups did not initially find me because I was posting about cancer. They keyed in on my name.  And yes, it took my chemo addled brain way too long to figure that out.
  5. Twitter is a great place to follow a political debate. Just turn on the TV. Turn off the sound. Follow the tweets. Hilarious!
  6. Twitter is sometimes a bit psychic. How did it know to suggest a plantar fasciitis product the day my heel was hurting?
  7. Twitter is sometimes really out of the loop. It suggested I follow Miley Cyrus, a hotel across the country and a random university. Maybe Miley is hosting a concert on campus just for middle aged Moms complete with free lodging?
  8. Twitter users sometimes follow you for no reason. You don’t need to follow them back to be polite. If you do you might end up with  tweets in your feed in languages you do not speak and can’t even identify.
  9. Twitter has its own version of Vaguebooking where you post part of a sentence or thought. It goes something like…http://trippgriffith.com. #twittertease
  10. Twitter is the fast food oasis on the information superhighway. A lot of intellectual junk food but if you look around you can find some great stuff. It’s kind of growing on me @tripgriffith.
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I’m Not OK – But I’m OK With That

IMG_4533Last night someone asked me if I was OK now. It is a question I get quite frequently since undergoing cancer treatment. My immediate reaction was to say “yes, I’m doing really well” and then try to steer the subject elsewhere but the question stuck in my mind. Am I really OK? What does that really mean?

As October draws to a close, I find myself more emotional and even teary-eyed. I knew this month would be hard as not only would I be bombarded by pink, but it is also the two year anniversary of my my double mastectomy. I was pretty disillusioned with all of the pink awareness campaigning even before my diagnosis. Having October be one of the hardest months of my cancer treatment just added insult to injury. What I didn’t expect was how much I would feel like a part of a larger community and how much I would be affected by all of the things going on in the breast cancer community at large.

I’ve slowly but surely come to terms with all of the things that have happened to me personally over the last two years. I know I will continue to recover from cancer treatment. I’ve gotten used to my new physique. I take my tamoxifen every night before I go to bed. I follow up with my doctors on schedule. I know that there is a chance of recurrence at some point down the line but I don’t worry about it. Overall I feel like I’m doing pretty well and continuing to improve. I really am OK with where I am personally.

What makes my heart ache and brings me to tears is how many people we are still losing to this disease. Before my own diagnosis I don’t think I even knew the statistics and I definitely didn’t know anyone personally with metastatic breast cancer (MBC). I was disgusted by the way breast cancer was being used as a marketing tool to drive sales of pink products and I was shocked to learn how some of the big cancer charities spent donations, but I thought about these things in kind of an abstract way. It wasn’t really personal for me. Now it is very personal. I have lost friends. I have seen the pain in the eyes of a metastatic breast cancer patient when they talk about how Pinktober makes them feel. I have listened to their stories and while I hope it never happens, I know I may one day walk in their shoes.

I’m not OK with the big pink status quo. Somehow in the drive for donation dollars we have created a culture that leaves those most vulnerable in our community out in the cold. A perceptual divide has been created between those with early stage breast cancer and those who have metastatic disease. The idea that early detection saves lives has led to an assumption that those who end up metastatic did something wrong. We have created a culture of “us” vs. “them” in an effort to assuage our fear of our own mortality. “We” hope we will never be “them”. Yet the reality is that 30% of “us” will eventually be “them”. In our zeal to accentuate the positive we have left the very people who should be at the center of our community completely outside our gates.

When I first saw some of the portrait collages circulating under #iamsusan on social media I was reminded of the Newsweek issue early in the AIDS epidemic that featured pictures of some of the first people to die of AIDS. I remember sitting on the floor reading their names, barely able to turn the pages as the tears flowed. So many young men gone way too soon. I had a similar reaction to the #iamsusan campaign. All of those people either living with or already gone from metastatic breast cancer. Then I read a blog post by Beth Caldwell at The Cult Of Perfect Motherhood  comparing the AIDS epidemic with metastatic breast cancer. I hadn’t realized we are losing the same number of people per year as we were losing at the height of the AIDS epidemic. The only difference – then the majority dying were men, now they are women.

The parallels don’t end with the stats. At the time I was reading that article in Newsweek AIDS patients were being treated like pariahs. The overall social stigma for MBC patients isn’t as strong as it was for gay men back in the 80’s but the way they have been treated within the breast cancer community is disturbing. I have heard so many stories of MBC patients being asked to leave support groups because they are “too scary” for the early stage patients. They are often treated as if they did something to deserve their disease because people believe so fully in early detection that they assume anyone with MBC didn’t follow all the rules – they must have skipped their mammograms or not taken the prescribed treatment. They are told things like “you will beat this” or “all you need is a positive attitude” by people who don’t understand that MBC is a terminal diagnosis. They are even accused of faking cancer because they “don’t look a cancer patient”. How have we spent so much money on awareness and education and remained so ignorant?

I have seen changes this year that give me hope. There seems to be at least a little less pink and a little more awareness in the marketplace. MBC advocates are demanding their voices be heard through groups like METUP, funding research through Metavivor and putting names and faces to this disease through campaigns like #iamsusan,  #numbershavenames and Story Half Told. Articles more focused on the reality of breast cancer treatment, pink washing and research funding have been published by major news outlets.  The MBC Project is a groundbreaking approach to research designed to make advances more rapidly than traditional models. A lot of the people driving these positive changes are also living with MBC. They devote their precious time and energy to the cause hoping for a cure in time for themselves, but also hoping to keep the rest of us from ever sharing their experience. I am overwhelmed with gratitude for everything they are doing for all of us.

When someone asks me if I’m OK now I’m sure I will hesitate. The answer isn’t easy. I am no longer ignorant about metastatic breast cancer and I am not OK with everything I have learned. How could I possibly be OK when so many are dying every day?  I am not willing to set that knowledge aside and move on with my life. I’m angry, sad and disillusioned. I’m also hopeful, greatful and inspired. I’m still figuring out where I fit in this movement, but I know somehow I need to contribute more than tears. I have to act. I have to write. October is drawing to a close but in many ways for me it feels like I’m just getting started. The next time someone asks me if I’m OK, I may not say it aloud but I know what I’ll be thinking.

I’m not OK, but I’m OK with that.

If you would like to donate to breast cancer research, I highly recommend Metavivor – the only organization using 100% of donations towards research for a cure for metastatic breast cancer. Another great organization is the Breast Cancer Research Foundation – highly rated by charity watch groups and devoted to breast cancer research including metastatic breast cancer.

I also have to give a shout out to First Descents – an organization devoted to giving young people affected by cancer a life changing adventure. I was lucky enough to go on a kayaking trip with their FD40+ program. They named me Trip and taught me how to be “Out Living It” which for me includes writing about it here.

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Gotta Get A Game Plan

The recent announcement that the American Cancer Society is changing its recommendations for breast cancer screening has lit up the internet with articles, blogs and tweets. Reactions are all over the map from “it’s about time” to “hell no!” to “not enough”. The media has been spreading the word, often reducing the recommendations to a sound bite that distorts the message. People are asking me what I think and what I would recommend because I am a breast cancer survivor. I am not a medical professional. I’m not a scientist. While I’ve read many opinions about the recommendations, the data behind it and what people think about it, I’m in no way, shape or form an expert or even much past average in my knowledge on the subject. Rather than give my opinion of the recommendations, I am going to address the issue as I would if giving advice to a friend.

First a few clarifications. Screening mammograms are for routine checkups when you have no signs of breast cancer. Diagnostic mammograms are used when there have been changes in the breast or when a screening mammogram finds something suspicious. The new recommendations are for screening mammograms for those with “average risk”. They do not apply to anyone with above average risk factors. They also do not apply if you suspect something is wrong no matter what your age. In either case you need to talk to your doctor.

Here is what I would recommend to a friend:

Map Your Medical Family Tree: Sit down and make a medical family tree. Ask your older relatives to help you. Note how family members died, what major health issues they encountered (you can use this for other issues like heart disease as well as cancer) and their ethnicity. Go up all branches of your family tree. Breast cancer can be passed through men too.  Don’t forget the family members everyone likes to pretend don’t exist. That crazy great uncle who did something scandalous in the 1920’s – you share just as many genes with him as with his upstanding law-abiding siblings. Note any cancer or possible cancer, not just breast cancer. Some genes are identified by a pattern of several different types. Note any unusual and possibly genetic disease. Even if all you know is that someone dies of “female issues” said in a whisper at a family reunion years ago, put it on your map. A female relative may have died of breast or ovarian cancer before it was acceptable to talk about it. A male relative may have actually died of breast cancer that spread but was listed as something else. While you are at it note things like heart disease that can also be inherited. Share your map with your family. It is important for your overall health, not just for cancer risk.

Investigate Your Genes: If you have a family history of any type of cancer, consider genetic counseling and testing. New genes are being discovered all of the time. Just since I was tested 2 years ago the number of genes on a basic screening test for breast cancer has more than doubled. If at all possible get genetic counseling as they will be able to go over your family history and pinpoint things that are risk factors that you might not expect. For example the fact that I have a very large noggin was a clue to a possible family history of PTEN. One of the funniest moments during treatment was watching a genetic counseling intern try to figure out how to politely tell me she needed to measure the circumference of my head without saying she thought it was rather large. I tested negative for PTEN, but they suspect a similar gene at work that they just haven’t discovered yet. Also a family history of other types of cancer may point to a gene that also increases the risk of breast cancer.

Explore Known Risk Factors: Educate yourself about known risks for breast cancer and make a personal medical history noting any risk factors you may have. Hopefully we will have better risk assessment tools soon but in the meantime note anything that may be relevant to you personally so you aren’t trying to remember things on the fly at your checkup. Here is a link to a list of risk factors from The American Cancer Society. A couple that you need to ask your older relatives about – If you were born from 1938-1971 were you a DES baby? Were any of your ancestors Jewish people of Ashkenazi (Eastern Europe) origin? I have several friends who did not find out that they had these risk factors until after they were diagnosed with breast cancer. There are also a lot of myths about breast cancer risk. Just in case you were wondering I did not get breast cancer because I ate too much sugar or wore an underwire bra and neither will you.

Educate Yourself:   Read about the limitations and benefits of current screening options. Where do you fall on the scale from “I’d rather have a million false positives biopsies than take the chance of missing a real one.” to “Being called in for repeated testing and biopsies would send me over the edge.” What scares you about breast cancer and breast cancer screening? Do you think about it very much? Did my diagnosis freak you out? Your own personality and reaction to risk will influence how you feel about screening. If you do not have many risk factors, they may weigh more heavily in your screening decision. Don’t make decisions based on fear.  Acknowledge your fears and then make a decision based on knowledge. Screening isn’t preventative and it isn’t perfect. It doesn’t keep you from getting cancer and it doesn’t always detect it either. It does help find it earlier when it may be easier to treat.

Know your body. Listen to it. If you feel something is wrong, get checked. Don’t wait until the whisper becomes a shout. Breast cancer is not always a lump. Any changes in the breast should be checked out. If you are under 40, don’t let anyone tell you that you are too young for breast cancer. It is rare, but younger women and men tend to have more aggressive types. I have heard way too many stories of delays in diagnosis and treatment because doctors didn’t listen to younger patients. And yes, this applies to men too. Breast cancer in men is relatively rare, but tends to be caught later because men don’t realize it is a possibility and ignore early warning signs.

Treat Yourself Well: The two biggest risk factors for breast cancer are being female and getting older, both completely out of our control. There are a few risk factors for breast cancer after the age of 55 that you can influence. Addressing those issues will also help your overall health. You only get one body, so treat it kindly. Eat real food. Limit alcohol. Quit smoking. Find something you like to do and move your body every day. You don’t need to be rail thin, a vegan or a marathon runner. You just need to make better little choices that add up. I love you and want you to be around for a long time. We still have so many adventures waiting!

See Your Doctor: If you don’t already have a doctor you trust, find one. Take your family history and personal medical information to your checkup and discuss them with your doctor. Together you can come up with a screening program that is right for you. While you are at it you can come up with an overall plan for your health. Whether we like it or not, we are getting older. Our bodies are becoming more high maintenance. We may feel 20 inside but our body doesn’t always agree. We need to take good care of ourselves. Once you have a plan in place, follow it. I know sometimes it seems like crawling under the bed and singing “La la la la la…” is preferable but sometimes we have to be grownups. Put on your big girl panties – or your big boys briefs – and check off all the stuff on your medical maintenance list.

Take a Deep Breath: Congratulations! Take a deep breath, pat yourself on the back for an excellent display of adulting and get back to living life. I think sometimes we conveniently forget the fact that we are all going to die sometime. We let fear of dying or fear of something like cancer take up way too much space in our heads. We believe we have a lot more control over life than we actually do. Take control of the things that you are able to and let the rest go. Cancer doesn’t happen to people because they didn’t worry about it enough. It just happens. When my time comes I hope to come flying around third and slide into home with my hair flying, knees scraped, streaked with mud and grinning ear to ear.   I am hoping that will be sometime after 2068 when I will reach the ripe old age of 100. I hope you will all be out there on the playing field with me, but I know that some will be in the stands cheering me home while I will be cheering from behind home plate for some of you when it is your turn. First Descents (a charity focused on young cancer patients) has the motto “Out Living It”. My FD tribe also uses “Out Living It Together”. That is what I wish for all of us – that we get out there and live this life together. Tomorrow is never guaranteed but we always have today. Let’s get out there and live it!

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