The Tip of the Iceberg

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Today is the last day of Brain Cancer/ Brain Tumor Awareness Month, and I’ve got to admit, I’m ready to get some color back in my wardrobe. Grey has never been my favorite color, and now I wear it all the time!

As we end this month, I feel like I should report in a little bit. It’s been so busy! And it has been more successful than past years! I even saw an airline employee wearing a grey tie this year! Granted it was only one guy, not the whole crew, but progress is progress!

I traveled from Kansas to DC, Iowa, Texas, and Pennsylvania this month – mostly for volunteer purposes (Texas was also a work trip). I learned some good and some bad stuff about the world if cancer research, but I’m more optimistic than ever. That optimism is due in large part to the Childhood Brain Tumor Tissue Consortium.

In the competitive world of cancer research, they have found a way to work with their competitors. They are eager to help others access the information they have gathered, and have a vision of their database moving well beyond the world of childhood brain cancer research. This is a mission so closely aligned with that of Dragon Master Foundation that we could hardly believe it was real.

One of the project leaders told us that they “leave their egos at the door.” What he didn’t say is that they also leave behind some money making opportunities. Doctors are volunteering their time to build this resource. Others are working far more hours than they are compensated for, but they are all happy to do it. Why? Because they understand that this type of collaboration is going to change the world of cancer research. In fact, I’d say it is going to change medical research. Period.

But before it can, there is a lot of education that needs to happen. We need everyone to act purposefully toward bringing about a new research system. What exists is a hodgepodge of databases built over time that are inadequate for global scalability. What is needed is a massive database (think Google or Amazon or NSA) that can be utilized by cancer researchers everywhere.

It may sound crazy, but this database is going to depend on you. You are the consumer in this equation. What are you “buying?” Are you asking questions of your hospitals and nonprofits? Do you know if they are sharing their data?

Even if you ask, you may not get a straight answer. Many nonprofits ask that researchers report their findings, but there is not a lot of oversight to ensure that reporting happens. And if it happens, it may take years. We demand instant access to all sorts of superfluous data. Shouldn’t we demand instant access to data that could save lives?

If these types of questions sound important to you, then please support Dragon Master Foundation. We need people who care to pay attention and help spread this message. Change is not going to come from the government or the pharmaceutical companies. Change is going to come from you. And me. And all of the people who are tired of watching their loved ones die.

One person absolutely can make a difference. Are you going to be that one?

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52 People You Need to Meet: #21 Stacie Kneip

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Trisha Ann Kneip is my mother, and now she is watching over me from above. She wouldn’t have to if it weren’t for September 23, 2010. My mom was my support. She was there for me from the day I was born until the day she passed away on May 28, 2012…my 24th birthday. My mom and I were very close, and our bond grew stronger with the birth of my first daughter, Hope, who was born very sick and premature. My mother was my hero and the one person I could ever count on.

In late August of 2010, my mom and I were out on a walk and she was suddenly slowing down and said she was exhausted. Trips to the store were much the same, she was walking so slow and tried to push herself forward and her body wouldn’t let her. Over the next few weeks she was beginning to sleep more and became more exhausted. She went to her primary doctor who told her to take more vitamins. Since we both ate extremely healthy and exercised on daily basis, she knew it wouldn’t be fixed with a vitamin. She was at work one day when her cell phone rang and she answered, it was my one year old daughter. My daughter babbled in baby talk, and my mom told me she was going to the ER right after work because she knew something was wrong. My daughter’s voice was the sign she needed to get answers for her fatigue and the facial numbness she felt on her left side.

I called multiple times to see what was going on at the ER that night, and I will never forget those words, “ I am alright Sissy, they are going to keep me overnight though.” My mom was trying to save me from the agony of her diagnosis. I pushed for information and she said, “It’s going to be ok Sissy, but they said I have a brain tumor. “ Her voice dropped, and I could tell she was trying so hard to be strong, when she didn’t have to. But it was her nature to be strong for everyone else. We were in shock, and after that phone call I fell to the floor surrounded by tears.

The doctors stated they believed we were dealing with a high grade glioma. She was scheduled for surgery on the 29th of September for a biopsy because her tumor was in the thalamus region and was too difficult to be taken out. We received the results on October 7, 2010, after waiting at least two hours in an overcrowded waiting room. The doctor said she had what we suspected – Glioblastoma Multiforme, the most aggressive form of brain cancer.

My mom started radiation and chemotherapy which made her even more exhausted. On December 31, 2010, a tornado came through our area and knocked out several close neighborhoods. On that day, I came home and found my mom lying unresponsive. I called 911 and told them about her cancer and that they needed to hurry. They rushed her to St. John’s hospital, and we found out she was going to need a shunt. She remained hospitalized for a week. She was then sent to a rehabilitation hospital to help her get coordination again. She went on four rounds of chemo and a new drug called Avastin that worked for a while. But like those who have been on this journey know,  Avastin only works until it doesn’t. My mom went on hospice care in April 2012 and passed away on May 28, 2012.

What is it like to have the ONE person you love the most not be here? It is the absolute worst.   Every day I wake up with this urge to call my mom, to see her and let her granddaughters get to spend time with their grandma. Instead I show them pictures, and talk about her on a daily basis. It is important to me that they know of her kind heart, compassionate ways and her humor.

What I wish I knew before GBM?

I wish I knew life could be taken away so harshly. I have never seen cancer change someone’s appearance so much! And yet this change is recognizable by those who know a GBM patient’s journey . The journey of GBM lives in the eyes of the patient; they all have the same eyes.

I wish I would have said I love you more. I know I said it every chance I got, and as much as I could, but if I could have said it more I would have.

I wish I would have asked more questions. I wish so much when I cook dinner that I could call my mom and ask her about a certain dish. I wish when my kids are sick that I could call and ask what to do. I wish I could have heard more about life.

What cancer allowed me to see – Cancer allowed me the ability to show my mom that I would be ok. Once given the GBM diagnosis you know the prognosis is grim. Patients receiving treatment will live approximately 15 months from the date of diagnosis, some shorter and some longer. I did not want to see my mom as patient; I wanted to see her as only my mom.  I had no idea how much time I had left with her. I wanted her to live as much of her life as possible being as happy as she could and to live out her dreams as much as possible. Her dream since childhood was to visit California so I wanted to try and give her California. I wrote an essay to the Dream Foundation that would grant her a dream of her choice, and since she couldn’t fly to California she went to her second favorite place Florida. I wanted to show her I would be ok in life, as I felt that is what any mother would want before they passed. So I lived, and I tried to let her live her life as she did before cancer. Whether that was the right thing to do or not, I am not sure. But regardless what you do during this journey you will never feel it was enough, there is always a feeling of guilt or “what if”. What you have to remember is that you did what was right for you and your loved one in that time, and they knew that. As I write this just a few days before my mom’s two year angelversary and my birthday, my heart hurts, my emotions are a mess, and the pain I feel from the loss of my mom will never subside, it will only get easier over time to cope with it.

I love and miss you more than anything in this world mom.

To learn more about Brain Cancer please visit: http://www.abta.org/brain-tumor-information/types-of-tumors/glioblastoma.html

There is not enough awareness for Brain Cancer which is why Grey in May is so important, don’t wait until it happens to your family to raise awareness start now and help by remembering all of those who are fighting or fought for their lives from this horrible beast GBM.

52 People You Need to Meet: #20 Sarah Coffin Witte

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What I Wish I Had Known…

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By the time my son Andy was diagnosed at the age of 26 with terminal brain cancer (GBM/PNET, a brutal combination of Glioblastoma Multiforme and Primitive Neuro Ecto-dermal Tumor) there was a lot I already knew. I’d been his mother for 26 years, after all. I knew how to coax a funny little boy out of his moods, how to soothe a teenager through disappointments, how to see the big picture and not sweat the small stuff.

I knew how to let go. In 2008, I was in Maine and both my sons were in California, living a few blocks apart in Oakland, close to each other and loving their community of friends. Byron was a recent graduate of the University of San Francisco, hoping to find a job in public health nursing, and Andy was a musician and barista. He had just fallen in love with a beautiful drummer, just found a band to play with, just rented his first apartment out there.

I knew how to stay strong in crisis. I had risen to that challenge the day Andy was born, when he was taken to Children’s Hospital in Boston with ‘petechiae’, little red subcutaneous dots that indicated a concern for meningitis. I had stayed strong moving out to Arizona and back east again, strong through my husband’s unemployment, strong through the boys’ tearful nights of homework and meltdowns over girlfriends, strong through a devastating divorce, the loss of dear dogs and cats, and strong through an intervention in family alcoholism. I am calm in crisis. This is a good thing. When Andy collapsed in California, and an MRI revealed a large diffuse mass in his brain, and he was scheduled for a craniotomy and biopsy, my new husband and I left our honeymoon and flew west to get there in time to see him that night in the ICU, in terrible and unforgettable (really unforgivable… such a bad hospital) agony. I stayed calm. I comforted others. I made plans for getting Andy back east and getting the medical team lined up to hopefully buy some time from the monster.

I knew how to be realistic. I knew we don’t all get to old age. Having lost loved ones before, and having seen others endure what so many think is just unthinkable, I had done plenty of thinking about the so-called journey, and what befalls us along the way. S*** happens. We are fragile. It’s just biology. It’s nobody’s fault. My aunt, my parents, and even my sister had all lost a child. Children had also died in my town due to bone cancer and heart disease, as well as from accidents. My beautiful cousin, Lisa, died of a subdural hematoma one summer day, leaving two children and a stunned husband. Friends in our lives died of leukemia, breast cancer, and ALS. I knew that there were no guarantees.

I knew how to grieve, thanks to all those losses, though none are as close to you as your child. I started grieving the day of Andy’s surgery. I called my ex-husband at the hospital to see if Andy was out of surgery, heard the terrible preliminary diagnosis, and then called my sister from the runway at Oakland Airport after touching down, and said, “Google this word: G-L-I-O-B-L-A-S-T-O-M-A. Then call me back OK?” She said calling back with the grim news of a twelve to eighteen month prognosis was one of the hardest things she ever had to do. From then on, however, it was our reality. We never hid from it or denied it. That would have been a waste of time, we thought. Call it anticipatory grief: that’s when you know you’re going to lose someone you love. You grieve in private moments, and every day is a journey of courage and love.

I knew how to make the best of every day. Something about the person Andy was, so full of insight (or his own extreme analysis of the world) and appreciation for the best things in life, brought us all to a shared focus on love, fun, laughter, music, art, animals, beautiful skies, firelight, the best of friends. From January 2009 to May 2010 when the cancer consumed Andy’s poor brain and quieted the rage at last, we boogied. We knew how to love, and live with love.

I knew how to trust my instincts as a mother, from Andy’s home birth to his hospice death. Five months before he died, he even fell in love again. People asked who was this person coming into our lives at this incredibly fragile time? The answer was Heidi, a talented, sweet and brilliant woman, who wanted to be with Andy. When I told her, you know he’s going to die and we’re going to have to see him through to the end, and if you don’t want to do it, say so now and I’ll understand, she said, I’m in. How did the universe even bring this star child into my life? Heidi’s previous life experiences brought us domestic serenity, massage, herbal healing, creativity, caregiving skills… even more calm in the storm. She had my back and I had hers. We made it through the worst of days, the worst of nights, and I am a better person for having had her walk into my life. She is now my daughter-in-love, for life.

So after all that, what do I wish I had known? I have asked myself this question, so many times, ever since Amanda posed the question. The first answer is: I don’t wish I had known anything that it is not within a human’s potential to know.

I know there’s no doctor or alternative healer who could have saved Andy. I know we gave him the best of medical care. If Senator Edward Kennedy with the same diagnosis – who could have afforded ANYTHING – went through the same radiation and chemo regimens as our son, and died within the same typical time frame, then I know there was nothing on earth that could have saved either him or Andy.

I know that the afterlife is not for humans to know. I know that wherever we go and if we have any consciousness after we die, no one has ever proved to know. I am fine with not knowing. I suspect we go back to wherever we came from, and I feel no fear or worry about that. I trust it is a place free from pain or sorrow.

I know how blessed I am. I know that the world I live in – lucky, lucky me — cares deeply about me and my family. I had nothing but love and support of every kind. My neighbors fed and housed our extended family as they came and went. My employer gave me security and flexibility. My church and pastor took amazing care of us during and after Andy’s illness and death. My dear husband, Drew, offered nothing but love, support and kindness. Our new marriage went through quite a test, and essentially was put on the back burner for the first year and a half. I found empathy and support through online communities such as Cancer Compass, Young Adult Survivors of Glioblastoma, Daily Strength ‘For Moms Only’ grief support, my Oasis friends group, and eventually, the astounding blessing of the GBM Warrior Women, a private Facebook group. Since joining each of these virtual communities, I have met the people in real life. We have embraced and wept and even laughed together. Nobody knows like somebody who knows. Compassion makes a huge difference.

What I wish I had known then, and what I seem to care most about growing as a skill in my life going forward: I wish I had known how to comfort. Deeply, meaningfully, and successfully. I have learned from others who have journeyed through terminal illness as parents and spouses and friends and children that we want to know what to say. We grope and grasp and struggle. I felt desperately unequipped to comfort my beloved and terrified and outraged son.

Yes, of course, I said many good words. Loving words, the best I could think of. Constantly and every day. I told him it wasn’t his fault. That terrible unfair things happen to good people. I told him that we would be with him to the very end, that he would never be alone, no matter what. I told him he could have as much of the narcotics and painkillers as we could get, and he could manage. I told him how much I loved him, a hundred thousand times. The very few times he crashed and raged and wept and howled in grief over the end of his own life, I held him in my arms and I said I’m sorry. I am so sorry. I am so, so sorry. I said I wish there was something, anything, I could do. I said I wish I knew words to say. I said I wish it could be me instead of you. I said I am sorry they haven’t found a fucking cure; they’re working on it, sweetie, but right now there’s nothing. I said I know, it sucks! I said I can’t believe it either, that there’s nothing else out there. Isn’t it terrible? Isn’t it unacceptable? I said you will never be forgotten. I said you have been an amazing person and goddammit yes, please, you have to believe this, you really have made a difference in the world. Yes, I said, you have, I swear! I said you have given people so much, and the ripples will go on and on and on. I said I’m sorry. I said I will never stop loving you.

But what can you say to really, truly, deeply comfort someone who is dying, someone young and strong, who doesn’t want to die? Someone whose life was just coming into focus? Someone who loved life so much, and wanted to go on? What can you say that would put that person’s mind at ease? I don’t know. I didn’t want to say anything that was not true, that I didn’t absolutely know for sure, so I said I love you. I said thank you for being in my life. And I have said it every day since he died. And I will say it forever. I love you.

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Cancer is a Completely Solvable Problem

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This is a completely shameless photo of our dog, Cooper. Because everyone reads stuff on the internet that has a cute animal pic.

Do we have your attention now? (This is a completely shameless photo of our dog, Cooper, because everyone reads stuff on the internet that has a cute animal pic.)

Did that headline get your attention? It certainly got my attention when a researcher said those words to me a few days ago. As a lot of you know, we have formed Dragon Master Foundation to build a database that will make cancer research easier, faster, and more effective.

As part of our research into what exists already, we identified a large public resource called canSAR which aims to support cancer research and drug discovery by bringing large volumes of different data together. I have spoken with the leader of the canSAR project, Bissan Al-Lazikani, who agreed with the importance of building a global clinical database to support clinicians and have more immediate return for the patients in the clinic. As canSAR is an open public resource, there are ample opportunities for future links and collaborations with Dragon Master Foundation which we will aim to pursue.

We are still in the very early stages of development, so some would say I shouldn’t be sharing this information with you. I believe, however, that we need all of you to understand what is lacking in the world of research today so that you can help fight for these tools that the researchers need.

There are a lot of really good causes out there. I have friends who are committed to helping the homeless, rescuing animals, or fighting for research dollars for a variety of diseases. I’m asking all of you to put those goals aside for one moment. What if you could really do something that would cure cancer? Not one type of cancer, or one group of patients. But cancer. Period. I think that this database can do that. And there are some pretty respectable researchers who also believe that.

So here’s what I need you to do. Tell people about the Dragon Master Foundation. Share our Facebook page (https://www.facebook.com/DragonMasterFoundation). Follow us on Twitter (https://twitter.com/DragonMasterFdn). Share our vision.

If you are in the medical profession, give us a quote we can use about how this type of database is important.

If you are a patient or caregiver who experienced a “well-oiled” communication machine during treatment, or conversely, a lack of communication between hospitals, please tell us what you witnessed. And please share our vision with any of the doctors on your team.

If you can give, please consider donating toward our database. It is a massive need, and we will need massive funding. But wouldn’t you like to have some small part in bringing about a cure for cancer?

At this point, we are run completely by dedicated volunteers. However, the time is fast approaching when we will need to bring on a project coordinator who can take our project to the next level. Foundation funding is key to making this happen.

Lastly, I’d like to thank all of you who participate in the blog, social media, or other efforts that support Dragon Master Foundation. This is a wild, amazing ride for me and I want all of you to come along. Dr. Anna Barker told me, “Changing the world is hard, but it can be done.” Let’s do this!

52 People You Need to Meet: #19 Austin Pearson

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What I wish I knew before my brother got cancer was that not having him around would be the biggest obstacle in my life. For most of my life I have always been in a group of four. Meaning it was me, my brother, my mom and dad. Even after my parents got divorced, there was still an even number of people and I always got paired up with him. He and I were almost inseparable. Well, as inseparable as a brother and sister could get. Granted that changed slightly when we got into high school, but still we were still pretty close. When he passed I was alone. Not completely alone, mind you, but the person who I did just about everything with was gone.

Today marks the second year of the day David passed away. My life has changed significantly since then. I’ve grown up in some ways, but in some ways I have stayed the same 16-year-old I was when he died. When you lose someone a part of you stays the same. Stuck in time. You stay that person you were they day it happened. There’s not a day that goes by that you don’t think about the person you lost. Sometimes you see something that reminds you of them, and it makes you smile. Then you get a little sad because you can’t tell that person what it was that reminded you of them.

However, at the end of the day you might be relieved or maybe even a little happy because you know deep down that the person you lost is now free. Free from sickness. Free from spending countless hours unhappy in various hospital rooms with needles going in and out of their body. Sure, you are going to wish that they could have lived to see 100. Unfortunately, that’s not how life works. I learned that now. I’m not happy that my brother is gone. I’m not happy that I have to sit next to the guy that reeks of B.O. on a plane instead of my brother. I’m not happy that I have to say, “my brother passed away from brain cancer” every time a conversation about siblings come up. But I am happy that my brother is cancer free. I am happy that he is up in Heaven making all the little boys and girls who have passed away smile until their family joins them. I am happy about the impact he made on the people he knew and even some he didn’t know. He is my brother, my best friend, and now my guardian angel.

Editor’s note:

Today is Mother’s Day, and some of you might have been expecting a post from that perspective. In many ways, Mother’s Day is overshadowed by David’s death for our family, so I wanted to share Austin’s story with you today. I’m so proud of her, and I’m happy to share a little bit of her with all of you. May 11th also happens to be my brother’s birthday, so we have reasons to smile and celebrate today. The sadness is always there, however, just under the surface. Be gentle today with those you know who have lost a loved one. Those smiles may be held on by sheer force of will.

 

Every Person To Their Part

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This morning I got a message from a brain cancer friend asking about my Facebook profile photo. It features my son, an awareness message and his date of birth and death. It’s very classy, but I didn’t make it. The lady who did, made it for me before we ever met.

Her name is Cindy, and she has made it her mission to make these pics for anyone who wants one. I gave my friend her info, and I’m sure she will make him one – even though they’ve never met.

I have another friend who makes awareness images every day, Monday-Friday. It’s her second job, only nobody pays her. She just does it because it needs doing.

Yet another friend also makes awareness images from her artistic perspective. Others spend extra time on Facebook just answering questions from new caregivers or patients.

I’ve been in the spotlight a little lately, but I wish the world would take the time to see the amazing work being done, one small gesture at a time, by those irreparably changed by the world of brain tumors/brain cancer. It is remarkable.

I wish I had never had a reason to be here, but I am so thankful to be part of this community. A friend of mine likes to quote something David said to her one day. He said to “be a giver not a getter.” I guess that’s how we are blessed to be surrounded by so many givers. It’s part of David’s legacy.

We are coming up on David’s angelversary this weekend. It’s so hard to wait to see him again, but I know he sees us. When he checks in, I want him to see us giving others hope. I want him to see that we remember him and are trying to be as nice to others as he was. (That’s impossible for me, but I try!!) And I want him to see that we are part of a group that is making the world a better place, one small gesture at a time.

52 People You Need To Meet: #18 Anner Charrier

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This one goes out to all the BFF’s. The girlfriends from way back. The sorority sisters. The confidants. The first call after the first date. The wardrobe consultant before the big interview. The first to toast the big award. The pick-up-the-phone-no-matter-what-and-start-the-conversation-exactly-where-you-left-off kind of friends. We’re the Best Friends.

And then there’s brain cancer.

We’re not the patient. We’re not the caregivers. We’re not quite on the sidelines, but we’re not in the inner circle either. Ours is always a story of friendship.

Like everyone who has been a guest on this blog, I can tell you exactly where I was when I got the news that my best friend’s husband had just been diagnosed with a Glioblastoma. I already knew something about brain cancer because a family member had died from it, and I had a co-worker down the hall who had shaved his head in solidarity with his recently diagnosed best friend.  I didn’t need the person on the other end of the phone to remind me “it’s the bad kind,” I already knew. Only six months earlier, I had flown from Seattle to Anchorage to celebrate Karen and John’s wedding. We had a great time that day. I couldn’t even imagine how things could take such a horrible bend.

What do I wish I would have known before my best friend’s husband was diagnosed with brain cancer? What not to say.

“Just let me know what I can do to help.”

I wish I would have never uttered those totally useless words; much less used them in Every. Single. Conversation. I put Karen on point for finding me something to do; mostly so I could feel better. This turned out to be a really hollow gesture; a well intended one…but one that was never going to be cashed-in. Over the 15 months of John’s cancer, Karen always politely declined my lame offer. Then, on a particularly bad day, I said those dreadful words and Karen gave the most honest response, “Cure him! Do you have a cure? Because if you don’t, there’s nothing I need.” Believe me, I would have done anything to give John a cure, but instead all I could do was secretly vow to never, ever say those words again.

So here’s how I re-live it in my mind: Instead of saying those stupid words, I would have said, “I love you, and I’m sorry you’re going through this.” I’ve since stayed true to my silent vow. Sadly, it turned out Karen wouldn’t be my only friend dealing with brain cancer. Now I know to just call and say, “I’m headed past your place later today, would you mind if I dropped off something for dinner?”

“How ya doing?”

I’m pretty sure I never thought twice about it because we all say it all day long, and we never really expect an honest answer. I bet I say it 30 times a day at work, “How ya doing…fine. Say…I need your expense report by noon.” It’s a rhetorical question: fine or not fine, I still need the expense report. Whenever asked that question, Karen always gave a brave answer. I didn’t even realize what I had done, until my dad died. True to the Best Friend Code, Karen was the first to call me and on autopilot she said, “How ya doing?” And then without missing a beat, “Wait! Don’t answer that. You’re probably doing crappy. Don’t worry, you can tell me. You don’t have to be ‘fine’.” Yep. Another lesson learned.

Those are the type of things I regret most; the things I wish I would have said differently. I’m sure there are a few other things but those are the ones I really wish I could take back. Still, there are things that I recommend to all the Best-ies out there. These are the little things we can do in spite of stupid brain cancer.

Keep calling and writing even when we don’t know what to say. (I proved that!)

Don’t bail out because it’s uncomfortable, and the situation totally sucks.

Gossip. Come on…we’re the best friends and we’ve got the low down. I don’t care what Miss Manners might say about it, somewhere between “How ya doing?” and “Let me know what I can do?” toss in a snippet of, “You won’t believe what so-and-so did!” No one is going to forget the cancerous elephant in the room. Brain cancer gets all the air time – it is all-too real, depressing and at times it can be hopeless. A well-timed bit about the latest headline in People Magazine might be a welcomed break from recounting the situation to every single caller. Let’s face it, when there was real news about John, someone always called me…and it wasn’t Karen. Not because she suddenly didn’t want to talk to me…but because it’s all too much and best friends don’t care who made the call. They just care.

I got involved. I’m a doer. Everyone is different but in brain cancer’s Sea of Helplessness there are little islands of things we can do.

I combed the internet for a way to put a drop in the Find-a-Cure-Bucket that Karen so rightly demanded. For the longest time, I couldn’t find the brain cancer community! I honestly think that it was much smaller and harder to find 9 years ago when John was diagnosed.   Two years after John slipped away, I finally found an opportunity to DO something. In the back of a local magazine I saw an announcement for the Seattle Brain Cancer Walk. I dashed off and emailed Karen with the subject line: “I FOUND IT!!!!!!!!”complete with a zillion explanation points and giant red letters. I asked if I could walk in John’s memory. Um, that was a rhetorical question too.

Two Saturdays later I took a t-shirt, grabbed a Sharpie and wrote, “Walking in Memory of JOHN NORSWORTHY”. It’s a long story, but that day made such a difference to me and Karen. I could see all the HOPE. I saw BRAVE, HUMBLE, DETERMINED patients; who, at least for the moment, are brain cancer SURVIVORS. I could see a doctor and research team really and truly MAKING A DIFFERENCE. I saw all the other Best Friends rallying. I knew first hand from John’s experience that clinical trials buy time, which, until there’s a cure, is everything.

I couldn’t contain myself after that Walk. I immediately signed-up to help organize the next Walk. Then I called Karen and started squealing, “NEXT YEAR YOU HAVE TO BE HERE!!!”So that’s how it began. Karen would go on to say that looking forward to doing the Walk together was one of the first things that gave her hope after she lost John. It was one of the first positive things to look forward too.

There are a lot of big and small ways Best Friends can get involved and help fight brain cancer. There are a lot more walks, runs and benefits around the country these days. We can “Go Gray in May” and tell our stories throughout brain cancer awareness month – and all year long. We can post on Facebook and Tweet. We can drop off groceries that no one asked for. We can just show up…but just for a minute. We can give space and just be waiting until the time is right.

When this blog posts, Karen and I will be on a girlfriend’s trip to Boston. I promise we’ll be Going Gray in May and sharing this story to those who ask about it. Then in September we’ll latch arms and walk together again in the Seattle Brain Cancer Walk. Karen will reach out to strangers and offer comfort from someone who really understands, we’ll both be inspired by the people we meet, and we’ll take the day to re-tell our favorite stories about John. We’d all do anything we could to make him be here healthy again, and I’m not naive enough to think a little walk around Seattle Center replaces a man and his life, but it helps us pick up the pieces and keep moving forward. We remember him and we try to put a little bit of good into the world. That’s what he did his entire life and it’s always seemed to me to be a great way to honor him. Then we’ll clink our glasses and start planning to do it again next year.

I do it. I know a lot of other friends who do it too.

We do it because we know it’s what our best friends would do for us.

Anner is the Chair of the Seattle Brain Cancer Walk. If you’re in town, latch arms with her and Karen on Saturday, September 20, 2014 in the shadow of the Space Needle. www.braincancerwalk.org.

Here’s What’s Happening In Your Neck of the Woods

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May is here!! I know a lot of you would like to get involved in an event, but it is hard to know where events are being held. Last year, we had a pretty decent list on the Operation:ABC “Annihilate Brain Cancer” Facebook page, but this year, I haven’t had the time to update there. It is quite a bit faster to make a list on the blog, so I’m going to list stuff here. These are just May events, listed by state. Please share with your family and friends in these areas so they can help spread awareness, too! If you know of an event that I missed, please feel free to list it in the comments.

California

Brain Cancer Movie – Studio City, CA, All May – Help fund a movie about brain cancer. Make a donation here: http://www.gofundme.com/aimoore

4th Annual (Aloha themed) Party with a Purpose – Huntington Beach, CA, May 2nd – Buy tickets in advance: http:///www.eventbrite.com/e/mcfs-4th-annual-party-with-a-purpose-aloha-friday-tickets-10579157545

Bay Area Brain Tumor Walk – San Francisco, CA, May 3rd – For more info, visit: http://events.braintumor.org/bay-area-brain-tumor-walk/

Connecticut

Purchase an awareness t-shirt to support the Connecticut Brain Tumor Alliance at this link: https://www.booster.com/mariagoesgray

Illinois

2nd Annual Run/Walk – Lincoln Park, Chicago, IL, May 4th – Full details here: http://www.voicesinmotion.org/site/TR?fr_id=1191&pg=entry

Boxing and Beer for Brains! – Northbrook, IL, May 16th – Get details here: http://www.braintumor.org/join-the-fight/find-start-an-event/events/boxing-and-beer-for-brains.html

2014 Chicago Half Marathon & 10k benefitting Northwestern Brain Tumor Institute –  Chicago, IL, May 18th – Register to run for NWBTI here: http://nmh.convio.net/site/TR?fr_id=1210&pg=entry

Iowa

Race for Hope – Des Moines, IA, May 10th – Find out more here: http://www.raceforhopedsm.org/

Head for the Cure – Des Moines, IA, May 18th – Get details here: http://www.headforthecure.org/des-moines-ia/hftc-des-moines

Kansas

Gamesgiving – Wichita, KS, All May – Mention Dragon Master Foundation when you pay for Mobile GameDen services (GameDen, laser tag, archery tag, & human hamster balls) and 50% of the proceeds will go directly to the Dragon Master Foundation. Certificates are good for an entire year. For booking details, go to http://www.mobilegameden.com

Massachusetts

Make a Blast Against Brain Cancer – Charlestown, MA, May 17th – Buy tickets here: http://www.makeablast.com/EVENT_INFO.html

New York

Irwin Berson Art Exhibit – East Meadow, NY, May 4th – Get info here: http://www.braintumor.org/join-the-fight/find-start-an-event/events/irwin-berson-art-exib.html

Texas

Head for the Cure – Plano, TX, May 10th – Find Info here: http://www.headforthecure.org/north-texas/hftc-north-texas

Washington

Pedal It Forward 1st Annual Bike Ride for Brain Cancer Research – Seattle, WA, May 3rd – Registration info can be found here: https://kathigf.ejoinme.org/?tabid=520387

Washington, DC

17th Annual Race for Hope – DC on Sunday, May 4th – For more information, please visit: www.curebraintumors.org.

Wyoming

Dinner/Show benefitting the Olivia Caldwell Foundation – Cheyenne, WY, May 16th – More details can be found here: http://www.oliviacaldwellfoundation.org/#!upcoming-fundraisers/c48r