People You Need To Meet: #45 Linda Strause

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Randy'sPaddleOut

Friends and family had always been an essential part of the life we shared together for 35 years of marriage. Our days were filled with activity; work, family, and planning travel adventures. We skied with friends every year, we arranged scuba diving trips with family and friends, and we traveled on extended family adventures almost every year since 1985.

“You take your children on adventure travel, but they are so young? What do you do with them in the airplane?” friends would ask. “Put their seat belts on” Randy would answer. This is what made our life so full of laughter and love.

We were having four people for dinner on Saturday, April 5th, 2008. It wasn’t a special dinner but one where Randy and I looked forward to introducing two couples to each other and enjoying not only our friends but also the making of new friends. However, for about a month he hadn’t been feeling well. We had been skiing in Tahoe with wonderful friends but, Randy felt weak so when we returned he went to the doctor. Nothing unusual was found so rest was prescribed and life continued. But that Saturday Randy said “I just don’t feel right.” He showered and off we went to the emergency room. Our “Life’s journey without maps” began.

I believe that a life’s journey without maps is one that has the best chance of leading to unique and lasting discoveries. Rather than an average journey with a defined direction it is rather a journey of “self-discovery.” It is also why our perspective of how life is to be lived changes with the ever changing path. And my perspectives were about to change radically! First, for so long I believed that a “caregiver I am not.” Mine was not a fear of dying but rather a fear that I would be responsible for the total care of someone I loved deeply. Friends, family, and yes even Randy, use to remind me that I wasn’t “Florence Nightingale.”

I recalled with laughter when a friend asked, “have you shot him yet” – referring to the fact that Randy had a cold for a few days. As for me, I am “NEVER” sick. Thus when we received the diagnosis of Glioblastoma Multiforme – better known as GBM and the most deadly, incurable form of brain cancer, all I could think of was that I could not possibly take care of him with the dedication, patience, compassion, and unconditional love that he so deserved. My greatest challenge in this journey would be to overcome this deep seeded fear.

That perspective was based on the experiences I had when I was traveling on a different life journey; a journey of life where future travels were planned, future work discussed, and future dreams of graduations, marriages, grandchildren, and retirement were possibilities. There were no maps for that journey either but we believed in living life to the fullest and striving to achieve our future dreams.

Early in April our life’s journey took a different path, and I suddenly found our two sons, 28 year old Tyler and 22 year old Brendon and I had become Soul Sitters to Randy. This new role gave our sons, our family, and our friends a totally different perspective on life. Without the support and love of our two sons, I know that this life’s journey would have included many “bumps,” “hurdles,” and “ditches” which were avoided as we came together to share with Randy – my husband and Tyler’s and Brendon’s father – the experience that this new journey would take us on. We evolved into Soul Sitting, learning one day and one moment at a time what was needed. We learned to live in the present while letting the next moments unfold.

Our home became open, in a sense that only those would experience Soul Sitting for someone so deeply loved, can ever imagine. One evening, when a friend was bringing over dinner, he politely asked, “How many people are going to be at the house?” I turned to Tyler and asked if he knew. “I just meet and great,” he said with a smile. Dinner came, people came, bread was broken, wine was shared, and we gather together with Randy who was ever so present. Others joined in to Soul Sit Randy and, in their own way perhaps, they were Soul Sitting Tyler, Brendon and me as well. Our life’s journey was shared with others and they each discovered the empowerment and encouragement that came from the experience.

Together we learned that the normal life, where one gets sick or injured and then gets better– “I feel much better today and I can get up and go to work”–was not the journey we were on. Soul Sitters must learn that each moment is measured by how little your loved one has declined from the day before. “Dad is only about 5% worse than he was yesterday, he can still manage to walk down the hall with only a little help.” Randy’s band of Soul Sitters never faltered; in fact it only grew and grew with a passion that to this day fills me with love.

Our wonderful neighbors, including 2 young children – 4 year old Ryan and 2 year old Taylor – were important members of Randy’s circle of friends. As Randy’s health declined and he was eventually forced to remain in a hospital bed, Taylor would come into the house with her mom, give me a hug and say, “I am going upstairs to hold Randy’s hand.” The image of the 2 year old little girl holding Randy’s hand still brings tears to my eyes. Randy’s band of Soul Sitters forever.

I also believed that depending on need, having Randy cared for and even die in a place other than his beautifully and passionately built home was “not a problem.” I explained to the hospice admission nurse that I did not have a deep commitment to having Randy die at home in our bed. Yet, that is exactly what happened. In the final hours, our home again was filled with Soul Sitters and in our bedroom family and friends enjoyed dinner and wine with Randy still present.

As the evening wore on, in-laws and friends drifted downstairs. In the end, Randy was in our bed surrounded in a circle of love. Our oldest son Tyler was on one side, our younger son Brendon nestled below him, each with their girlfriends cuddled closely, and me on the other side with my head, where it always was, deep within his shoulder. Peacefully Randy died, almost 2 years to the day after his diagnosis.

This “circle of love” was repeated at a tribute to his life. Over 200 people joined together at the Powerhouse Park and over 60 people paddled out beyond the surf, at our favorite beach wall – 20th Street in Del Mar – where Randy’s ashes were spread to the sea and to the heavens, his spirit remaining close to our hearts.

While I truly regret that our circumstances led us on this life’s journey – a journey with no signs, no boundaries, no maps– I am honored to have been a Soul Sitter and to have shared the unconditional joy and love achieved during this journey. I discovered that I could do things I never imagined being able to do. I discovered that through the love of family and friends one can move through any fear and overcome one’s greatest challenge.

This journey of self-discovery taught me that I need not be a single Soul Sitter and that banding together with the love of family and friends enabled me to become who I was meant to be, and a different if perhaps not better person because of it. It may not be possible for everyone, but it is wonderful when Soul Sitter is plural – “Soul Sitters.” In ways large and small I have been inspired by family and friends. I have learned the true meaning of friendship and have gained an appreciation of what it means to live life to the fullest, to strive to be our optimal best, to commit to being true to ourselves, and to continue to reach for our dreams. In a sense, this is a journey of self-discovery, one that will never end as long as it is immersed so clearly in the deepest love as this journey has been and continues to be.
As Brendon posted on FaceBook the morning after his father’s death, “When it comes to the end, all that’s important is family and friends.” That says it all and that is how I choose to live my life.

Editor’s Note: This series has been on a bit of a hiatus, but we will at least finish out the 52. It has  changed from its initial purpose, but it has evolved into something powerful for each participant, I believe. I hope that everyone who has a chance to read this series brings away a sense of hope – for themselves, for their loved ones, and for a cure.

Mother’s Day Wish

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As sweet and wonderful as my husband, daughter, bonus daughter, and bonus son are, they can’t give me what I really want for Mother’s Day. If you know me, you’re thinking I’d want David back. Well, sort of. I mean, with all of my heart, I’d love to have him right here beside me, but how can I wish him back from a world so much better than this one? Now that he is there, I know he must stay. So what I’d really wish for is that no other parent would have to prematurely say goodbye their child. I want a cure.

You can look at my son’s death in a few different ways. In the most detailed way, you could say, “he died from GBM so we want to cure that.” Or you could broaden that scope and say “he died from brain cancer so we want to cure that.” He was a teen when he got cancer and that would fall into “childhood cancer” territory, so you could say we should cure that. Or you could look at the big picture and say “he died from cancer, so we want to cure that.”

There have been successful foundations set up with each of those goals. I guess the difference we bring to the equation is that we see the synergy between all those goals. We need to see the minutia in order to see the big picture. But by focusing on just GBM or just childhood cancer, we may miss answers that lie just beyond in brain cancer or cancer in general.

Please understand that I am not faulting the foundations that came before us. They all have served a very important purpose. I believe that we fill a gap between all the other foundations. We want to bring them all together. We want to take data from the individual silos, from the small consortiums, and put it into one massive database. People think that researchers and institutions won’t share. We know that isn’t true. There are consortiums all around the world, and we have already signed on five hospitals to share their data with us.

The missing piece is the data – not the sharing. We need to create high-quality data that is meta tagged for a searchable, graphing database that can be used in real time by researchers in virtually any location. We want to give them access to the data AND the computational power they will need to work with it. In the same way that Facebook can suggest new friends, or Amazon can suggest the next book you should read, computers can help researchers find new leads in the war on cancer.

Instead of wondering why some patients are successful in a clinical trial and some are not, the computer would be able to analyze each patient down to the molecular level to see what the successful patients have in common. They’ll know what the patients have in common who aren’t successful on the trial. These answers mostly elude researchers right now because of the complexity of detail. This type of database will speed research by an incomprehensible amount.

In a span of moments, they could query the database for information that takes months or years to deduce with current systems. Think about it as trying to find information for a report in 1980. You would have to go to the library, dig around for books and periodicals, maybe even travel to a different library to get all the information you need. The internet has put the most mundane information at the touch of our fingers. We just want to do the same for critical cancer research data.

If you want to do something for me and for all the mothers who are mourning their child because of cancer, then please plan to attend this webinar: http://bit.ly/1dLwolc . You will hear people far more eloquent than me discuss this database and what it will mean for cancer research. It will give you hope, and I pray it will give you purpose because we need more people in this fight.

Brain Cancer Awareness Month Needs You!

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DavidWearGray

Brain Cancer Awareness Month is, at best, bittersweet. A time for us to bring awareness to a disease that takes a devastating toll on families. It is a time for us to celebrate the victories of those who are living with this disease and at time for us to remember those who were taken by it.

I will be posting a lot this month about the brain cancer warriors who have crossed my path, and I will try to bring awareness to the disease and to events happening around the country. Everyone can wear grey and talk about brain cancer awareness month, but hopefully, by posting this list, you may also be able to find an event near you to attend. Please also consider changing your social media images to a grey awareness picture. If you Tweet, I’d love to connect with you on Twitter. Tweet me at @AmandaHaddock and you can use hashtags #btam (for brain tumor awareness month) and #BrainTumorThursday – a day each week throughout the year that we raise awareness.

If you know of an event that isn’t on the list, please message me so I can add it. I’m pretty sure I’ll be adding events all month, so please bookmark this list and check back!

Anywhere
May 8 – Go Grey for a Day – Make sure you wear grey on this day and tell people that you are doing it for brain tumor/cancer awareness

May 15 – Webinar to learn about the latest in collaborative brain cancer research – http://bit.ly/1dLwolc

Tune in to Catch The Brain Wave each Friday from 6-7pm EST on WESS 90.3 FM LIVE in Pennsylvania!! Listen on the web here: http://tunein.com/radio/WESS-903-s28605/

Look for ways you can contribute to your favorite organizations every day. There are too many organizations to list all the possibilities, but here are some ways you could help Dragon Master Foundation:
– Following us on FacebookTwitter, or Pinterest
– Choosing us when you shop on AmazonSmile
– Recycling for us with our free shipping program
– Register your Dillons card using our #11547 – a lot of grocery stores have this option. If you don’t see your favorite foundation listed, tell them, so they can get signed up!
– Do your intent shopping with iGive

Also, check your favorite foundation’s website for other promotions that may be happening. For example, Dragon Master Foundation has the opportunity to win a unique piece of dragon art created just for the foundation! Check it out here.

Ok, now for a state by state listing of activities you can participate in:

California
May 2 – Bay Area Brain Tumor Walk – http://events.braintumor.org/bay-area-brain-tumor-walk/
May 3 – Los Angeles Ride for Kids – http://pbtf.convio.net/site/TR?fr_id=1980&pg=entry#.VUMDZ2TBzGc
May 8 – Striking out Pediatric Brain Cancer with the Los Angeles Angels – http://www.eventbrite.com/e/striking-out-pediatric-brain-cancer-with-the-angels-maxlove-project-and-the-mckenna-claire-tickets-16325952363
May 16 – Come Fly With Me Party with a Purpose – http://mckennaclairefoundation.org/events/come-fly-with-me-5th-annual-party-with-a-purpose-051615/
May 30 – San Diego Brain Tumor Walk – http://events.braintumor.org/san-diego-brain-tumor-walk/

Connecticut
Sharing Hope Walk the Walk Talk the Talk – http://hope.abta.org/site/TR?fr_id=3330&pg=entry

Florida
May 2 – National Walk to End Brain Tumors – http://wizathon.com/walktoendbraintumors-fl/
May 9 – Prohibition Gala – http://btagala.com/

Georgia
May 5 – 11 Annual JSL Charity Classic – http://www.jslcharityclassic.com/
May 31 – Bowl for the Bull – http://www.gofundme.com/bowlforthebull

Illinois
May 9 – 17th Annual Vernon Hills Brain Tumor Walk – http://www.abta.org/get-involved/events/17th-annual-vernon-hills.html

May 13 – Dine out at Kouri’s in Pekin – https://www.facebook.com/events/840909205993896/
May 15 – 3rd Annual Act for Alan Fundraiser – http://www.abta.org/get-involved/events/3rd-annual-act-for-alan.html
May 17 – Join the Voices 5K in Chicago – http://www.voicesinmotion.org/site/TR?fr_id=1291&pg=entry

May 30 – Cocktails for a Cause – https://myab.co/events/EC/

Iowa
May 1-3 – Lambda Chi Alpha Teeter Totter – https://www.indiegogo.com/projects/lambda-chi-alpha-teeter-totter-a-thon-for-abta
May 9 – Race for Hope Des Moines – http://www.raceforhopedsm.org/

Kansas
May 3 – Avengers Age of Ultron Movie Screening – http://www.dragonmasterfoundation.org/events/

Massachusetts
May 2 – Brain Tumor Alliance 5k – http://events.braintumoralliance.org/site/TR?fr_id=1160&pg=entry
May 17 – Boston Brain Tumor Ride – http://events.braintumor.org/boston-brain-tumor-ride/

Michigan
May 2 – BT5K – http://hope.abta.org/site/TR?fr_id=3183&pg=entry

Minnesota
May 17 – MN Brain Tumor 5k – http://mnbraintumor5k.com/

Mississippi
May 2 – North Mississippi Kilt Walk & Fun Run – http://www.kiltedforbraintumors.com/

Nevada
May 16 – Desert Gray Matters – http://wizathon.com/walktoendbraintumors-nv/

New Jersey
May 30 – National Walk to End Brain Tumors – http://www.wizathon.com/walktoendbraintumors-nj

New York
May 17 – 11th Annual Team Billy Ride & Walk for Research – http://www.braintumorcommunity.org/site/PageServer?pagename=BTR_SS_Homepage

North Carolina
May 3 – NC Triangle Ride for Kids – http://pbtf.convio.net/site/TR?fr_id=1990&pg=entry#.VUMC6mTBzGc

North Dakota
May 24 – National Walk to End Brain Tumors – http://wizathon.com/walktoendbraintumors-nd/

Ohio

May 18 & 19 – Joggin for the Noggin Benefit Dinner – https://www.facebook.com/events/350866698444089/

Pennsylvania

May 1 – Brews for Brains – https://www.facebook.com/events/1377664142561766/

May 2 – Avengers Age of Ultron Movie Screening – https://www.eventbrite.com/e/the-avengers-age-of-ultron-2015-3d-private-movie-screening-at-king-of-prussia-imax-and-stadium-16-tickets-15957153275

May 24 – BRAINFEST – https://secure2.convio.net/abta/site/Donation2;jsessionid=0C748EA3B0B8BED03111BA4D4F56B5A0.app274b?df_id=6720&6720.donation=landing

Utah
May 25 – National Walk to End Brain Tumors – http://wizathon.com/walktoendbraintumors-utah/

Virginia
May 29 – 3rd Annual Lambda Chi Alumni Clay’s Day – http://akidsbraintumorcure.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=515

Washington DC
May 3 – Race for Hope Washington, DC – http://www.braintumorcommunity.org/site/TR?fr_id=2360&pg=entry

Washington
May 3 – Seattle Brain Cancer Walk – http://www.braincancerwalk.org/
May 16 – BT5K – http://hope.abta.org/site/TR?fr_id=3182&pg=entry

May 30 – Bellingham Brain Cancer Walk – http://braincancerwalk.org/bellingham

It is my hope that these events will inspire you to get involved in awareness events throughout the year – not just in May.