A Circle Completes on Capitol Hill

You know those moments in life when something so unexpected, so exhilarating & so meaningful (all wrapped up in one) happens – that each time you think of it you get the chills all over again? I had one of those moments a few days ago in the basement of the Congressional Rayburn House Office Building.  It was such a special meeting, even Katie Couric, a big CRC and cancer advocate, tweeted about it!  Although spirituality is not a focus of this blog – I have to admit that the confluence of events leading to such an improbable chance happening made me feel like I was meant to be there, doing what I was doing.

But First… Why was I in the Basement of the Congressional Rayburn House Office Building?

I had one of the most interesting & exhilarating weeks of my life last week.  I and almost 150 additional CRC activists took part in the 10th annual Call on Congress advocacy event organized by Fight Colorectal Cancer.  We were brought together from across the country for a singular purpose: to prepare and then meet with our Congressional Representatives, Senators and their Staff to advocate for some of the biggest issues facing colorectal cancer (CRC) patients today – with an emphasis on 1.) Increased treatment & cure research funding 2.) An expansion in facilitating screening and polyp removal (which cures CRC before it starts!) and 3.) Awareness of the explosion in early-onset CRC patients.

Young patients (like me) also tend to be late stage/currently incurable upon diagnosis because there is so much pushback to getting screening colonoscopies if you are under the age of 50.  Because of this, the disease is often not caught in its early/more curable Stages when young people are diagnosed.  Infuriatingly, if you are under 50, there is even often pushback to getting colonoscopies if you have CRC symptoms! CRC is unique in that the diagnostic test (Colonoscopy) can also prevent (i.e. CURE) the disease if it is caught while it is still in its pre-cancerous polyp form.

These are some of the faces of early-onset CRC from our Call on Congress.  They are my friends and Colondar Sisters Taylor, Maegan & Lauren. All three of them diagnosed with Stage IV CRC.

Taylor-Maegan-La Mill_Hill Day.jpg

A Patient-Scientist-Advocate

These issues (expanded scientific research, expanded screening and expanded awareness of early-onset CRC) are all very near & dear to my heart.  We had two “preparation” days before hitting Capitol Hill.  I’m very thankful that Fight Colorectal Cancer gave me the opportunity to serve on both their Research Discussion Panel as well as give a stage presentation on my views from the vantage point of a Patient-Scientist-Advocate. It was a wonderful opportunity to try to articulate in person and to a live streamed web audience many of the same messages I have been writing in this blog over the past year!

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2016 Call on Congress_Tom Marsilje Featured Speaker

Drawing Together a Community – Both Old and New

This event is coordinated with The Colon Club – so many current and former Colondar survivors took part including almost all of this year’s group in the just released 2016 Colondar 2.0 . As I mentioned before, this group feels like Brothers, Sisters and Cousins to me so it was an incredible family reunion albeit one with some sadness at the missing of family members unable to be there like Lindsey, Christy and Joe/Ashley/Kris.

It wasn’t just reuniting old Colon Club acquaintances however, as formerly online-only friends were converted to the physical world & many new friendships were made! I think this is what naturally happens when an incredible group of activists are drawn together from across the nation with a shared experience and a shared purpose to try to do something about it! When I left DC, I felt like my CRC family had grown by 10-fold!

Time to Go to Capitol Hill!

March 16th, 2016 will be a day I never forget!  It was the day, after 2 days of preparation, we descended upon Capitol Hill.  Our day was meticulously scheduled with meetings with Senators, Representatives and their Staff based upon what State/district you were from – all the way up to past & current members of Congressional Leadership of both parties.

There was a team of 4 of us that worked together for California.  One of the team members was my Colondar Sister Phuong – here we are getting ready for the day!

2016-03_Call on Congress_Phuong & I on Capital Hill

The four of us (Phuong, Yasmeem, Kathy and I) made an incredible team. Phuong and I met Yasmeem and Kathy for the first time at the meeting but we just clicked as a team, it was amazing to experience.  It was like we had been practicing together for years not just 1 day! I think the key to our effectiveness was that our experiences and viewpoints were diverse.  We had the shared advocacy experience of CRC but we complimented each other’s experiences/viewpoints perfectly to address the totality of the patient experience.

Because that is what we had to do.  Address the totality of the patient experience. Our goal was to speak for the patients that couldn’t be in Washington DC.  To be their voice.  We all told our personal stories to personalize CRC.  I tackled the issues of current status of science and related research funding.  The others very effectively tackled screening and patient experiences. The group of us working together made for very effective presentations.  It will remain to be seen the political outcome but at the very least I don’t think the members of government we met with will forget us or CRC anytime soon!

Here is a picture of the four of us with Representative Eric Swalwell of California’s 15th District. He listened and interacted intensely with us during our meeting – it was positive and empowering beyond words.  This is the picture Rep. Swalwell broadcast throughout his social media networks immediately afterwards.

2016 Call on Congress_Rep Eric Swalwell

All in all the day was exciting and empowering.  It is hard to describe in words (oops a writer probably isn’t supposed to say that!) what it feels like to take such positive control over your own disease. Not only telling your own personal story and advocating for yourself to the very seats of political power but to also take on the mantle of doing it on behalf of so many friends and others throughout the CRC world. As I said, to be their voice.

It was simply incredible. I can’t wait to do it again next March!

Speaking of incredible… Time to get back to where we started.  Since you now know why I was in the basement of the Congressional Rayburn Office Building!

What happened there was simply amazing. Which is why even Katie Couric tweeted about it!

I was approaching the elevators hurrying to our next congressional meeting appointment.  I looked up. I saw someone standing there.  I looked at her.  She looked at me. I then got chills.  Standing at the elevator was Linnea Olson.  I had my “CRC Advocate” bag on my shoulder.  She had her “Lung Cancer Advocate” bag on her shoulder. As we both looked at each other in shocked disbelief, the shock melted and we ran to each other and gave each other a big hug. I was meeting with members of Congress for Fight CRC’s “Call on Congress” – on the exact same day she was meeting with members of Congress for Lung Force. We didn’t talk long (I regret) – speaking for myself, I think I was too overcome with emotion.

2016-03_Washington DC_Linnea and Me_PNG

Who is Linnea Olson?

Linnea is quite simply my personal cancer hero and my inspiration as patient, advocate and writer.  She has currently incurable Stage IV non-small cell lung cancer (NSCLC).  I have currently incurable Stage IV CRC.  Everything you have seen me do as a Patient-Advocate was initially inspired by Linnea.  My survivorship attitude, my advocacy, my online writing – everything.  There are many inspirational survivors – she was the particular one that inspired me from the beginning.  Even the title of this blog (“Adventures in Living Terminally Optimistic”) was (with permission) directly based upon the title of Linnea’s blog {“Life and Breath: Outliving Lung Cancer for the Terminally Optimistic”) as a homage to her, something I talked about in the very first “set-up” post of my blog.

To further make our connection & meeting amazing… one of her clinical trials (which she did before we knew each other personally) was a project I was a co-inventor & team member on – further & forever cementing our personal link.  She represents my internal drive to positively impact patients’ lives with new medicines – as a scientist it was an incredible experience to run into her in person.

If you haven’t checked out Linnea’s blog it is amazing. I have followed it for years and so should you.  It was one of the major inspirations for me to start this blog!

As the first Stage IV patient I followed in the blogging world – I directly modeled my attitude on survivorship after her’s.  I modeled my passion for patient advocacy & writing after her’s.  I would not be the same patient or advocate I am today without her. The scientific project I worked on helped her to physically live; the example she set helped me to emotionally live as a survivor & advocate.

As fellow Stage IV survivors with many things in common, Linnea and I have talked by email over the past few years after my diagnosis.  We have never met in person.  Until March 16, 2016 in the basement of the Congressional Rayburn Office Building.

A Personal Example of the Power of Research Progress and Clinical Trials

Linnea’s story of being given a dire prognosis as a Stage IV patient over 10 years ago is a cornerstone of my own personal Hope. Hope in the power of research advances & clinical trials to potentially arrive in time to have HUGE impacts on patients’ survivorship (including mine!).

Linnea was fortunate to be in the right place at the right time with a tremendous oncologist Dr. Alice Shaw. But… just as importantly she is an incredible example of the power of being a tenacious self-advocate when it comes to your own health & survival in terms of clinical trials.   She was one of the very first patients worldwide to enter a clinical trial for her sub-type of NSCLC. >10 years and 3 clinical trials later… she is still living with currently incurable cancer.  Despite being given a dire prognosis >10 years ago, Linnea just signed a 3-year lease on her apartment.  Speaking with her last week, you would have no idea she has Stage IV cancer. I’ll say it again: she has had currently incurable Stage IV cancer for >10 years (20% of her entire life!). The potential power of clinical trials and research breakthroughs indeed.

A part of my Fight CRC Call on Congress Research Panel Discussion

Although I do not mention her name or specifics of treatment, her general story of long-term survival via research is a cornerstone of my patient advocacy talks. She probably had no idea how her inspiration was spreading far beyond NSCLC patient communities into further tumor types – but it should, her story of Hope and inspiration are universal no matter what your Stage IV tumor type.

Linnea’s story had been a part of my research panel discussion for the Fight CRC Call on Congress crowd earlier in the week, preparing the advocates for their visit to the Hill to ask for increased cancer research funding. To illustrate to them to never give up HOPE while research is continuing to advance at a rapid pace.

For any scientist, meeting anyone helped by one of their projects is incredibly special.  On top of that, for me – seeing Linnea was also seeing my Cancer Survivor Hero for the very first time.  Seeing her gave me chills and brought home so many emotions of: my scientific Hope, my goal of shared survivorship beyond all stats, my writing, and my advocacy efforts.  Meeting her anywhere would have been special.  Meeting her on Capitol Hill during Call on Congress was incredible – I walked away shaken.

Tearing up as I write this, seeing her was simply amazing. I know in my heart we were both meant to be in Washington DC that day.  To finally meet for the first time while we were both advocating and being the voices of our respective patient populations that were unable to be there. Both of us attempting to survive, regardless of statistics, with currently incurable Hope. I know I inspire many people – now you know who inspires me.

We are all interconnected in this crazy thing call Life.

All Things Come Full Circle

6 Comments on “A Circle Completes on Capitol Hill

  1. Hey pal—made me cry. Seeing you on that day was beyond magical. I was looking at the back of your head and thinking ‘could that be Tom?’ And then you turned around and it was. You. Flipping unbelievable but oh so right that we should run into each other like that. What were the odds? About the same as the odds that we are now beating. Further confirmation that we have a knack for being in the right place at the right time. So once again, thanks rock star!!!

    xo Linnea

    Liked by 1 person

    • Love this Linnea! Damn, you should be a writer! Oh that’s right, you are 😉 “Flipping unbelievable but oh so right that we should run into each other like that. What were the odds? About the same as the odds that we are now beating. Further confirmation that we have a knack for being in the right place at the right time.”

      Like

  2. Such a wonderful story!!! So reminds me of the first time Kristy Cuevas and I talked about you and my cousin John Cresto……….’It was meant to be’. Again, thank you for the marvelous support you were to John and Bridget.

    Liked by 1 person

  3. I truly admire and appreciate all that you do! I believe you are making a dramatic difference in the spirit and lives of current and future fighters. It’s really, really amazing!

    You know, there are some cultures that believe that certain characteristics are attached to a name. It’s a person’s job to work to keep the integrity of the name they’ve been given. I’ve always loved the thought of that. I now feel like I need to up my game in life to keep up with all that Linnea is doing! She’s raised the bar for us Linnea/Lynneas out there!! She sounds like a truly amazing person, and I’m happy that she’s been a guide to you in your journey.

    Lynnea 🙂

    Liked by 1 person

  4. Pingback: True Faith (FAVORITE POSTS OF 2016) | AdventuresInLivingTerminallyOptimistic

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