Band of Brothers and Sisters

Friends. Family. Brothers. Sisters.

Those words get used a lot in my current Stage IV life and they’re not necessarily referring to the people you would expect.  They’re referring to fellow cancer patients and survivors, often especially those also with Stage IV disease.

There is a special bond between fellow cancer patients and survivors that is the deepest bond outside of nuclear family I have ever seen.

In general, friends are brought together by some sort of shared experience or characteristic. These can be location, field of work, personality trait or…………

Cancer is no different. It is unifying as a shared experience. Once you are in that club (a club no one wants to join) – you are in it for life, you know the secret handshake. And the club has layers – the closer you are in experience – usually the closer the bonds are.  Colorectal cancer (CRC) has a lot of unique attributes – so I automatically feel close to anyone who had gone through it.  On the next level up are fellow patients with Stage IV disease (regardless of anatomical site of origin) – where you are actively thrust directly into the presence of the grim reaper.  This shared active survival unifies fellow Stage IV patients together on an even higher level, no matter the type of cancer.  We’ve all stared death directly in the face and we’re still breathing – that is about as powerful of a unifying characteristic as there can be!

And finally, you have the most select group.  Those that match disease & stage exactly.  In my case, these are my fellow Stage IV CRC Brothers and Sisters, in particular the early-onset ones.  And I do not use those terms “Brothers” and “Sisters” lightly.  These are people that have both gone through the CRC-specific issues and treatments but have also stared death directly into the face, in the prime years of their life, and continue to have to emotionally and physically fight.

I am in a relatively rare (but getting MUCH more common) cancer situation.  I am: a CRC patient with active disease; I am currently incurable Stage IV and I am relatively young.  In the pre-internet days, I would have been extremely isolated, probably with skyrocketing depression because of that isolation.  I know exactly two people in San Diego with similar circumstances.  That means that pre-internet, my early-onset Stage IV CRC family, including me, would consist of exactly three people.

The Power of the Internet

I still remember the very first early-onset, currently incurable Stage IV CRC survivor I became close virtual friends with.  Her name is Marie.  How did I meet her?  I googled “Stage IV colorectal cancer blog” (or something like that) and her wonderfully written blog “Adventures in Spiritual Living was listed.  I was home alone on a summer Saturday afternoon (everyone else was vacationing in Cape Cod) and I read her most recent blog post.  I was blown away and enthralled.  Through this virtual connection I immediately felt stirrings of possible friendship.  Marie had currently incurable CRC but she was approaching life with joy and wonder.  Her cancer battle was tough however and she did not mince any words to describe the battles she was fighting.  I loved her mixture of day to day disease realism with consistent hope and joy.

After reading that first blog entry, I sat and read dozens of previous posts (as a long term survivor (7+ years at the time, now 9+) she had a long blog history!). I continued to be enthralled and with each post read, I learned more of her background and personality and I could feel a 1-sided friendship developing.  I contacted her via her blog, we became close friends by email and when I started to join Facebook CRC groups, Marie came right along with me!  With her permission, I partially named my own blog after her blog as an homage!

The internet and then subsequently social media such as Facebook changed everything. The underlying technology of Facebook is much more powerful than simply sharing kid photos, funny cat videos or the political rant of the week.  It draws people together, into a shared conversation, regardless of geographic location.  That is very powerful. My local cancer family of three early-onset CRC Stage IV survivors?  Because of social media, that family of direct contacts now is thousands of Brothers and Sisters large – spread across the fifty states and the world!

On social media we share our most intimate moments, often in “closed groups” that are only open to us “cancer family” members. We laugh.  We cry. We have fun. We cheer on good news.  We mourn bad news.  We support. We virtually live together. We form social bonds that are incredibly deep and they can be formed very quickly, sometimes in a very first meeting.

There are limits to social media however.  It is virtual. Interactions have a buffer of the computer/phone screen and of a keyboard/keypad.  I find it absolutely amazing how strong of bonds can be made under those circumstances but they are not maximized.

Until that virtual bond includes a real life encounter.  At which point something magical happens.

2014-10_Dana Farber_First Marie Pechet Meeting

My very first virtual Stage IV CRC friend was Marie.  My very first Stage IV CRC friend I met in real life?  Marie.  I was travelling to Boston for a second opinion.  Marie lives in the Boston area.  I was actually getting my second opinion from her oncologist! (small world!).  It turned out that my appointment day lined up with Marie’s doctor & chemo infusion appointments – so we would be in the exact same location for the first time ever.  Appropriately, both would be significant days for us: My second opinion consult and her CT-scan results.

Our meeting was magical.  We knew what each other looked like from online photos so we ran to each other in the waiting room.  Virtual-only friends, we immediately launched into a non-stop discussion on everything under the sun like a separated brother and sister who hadn’t seen each other for a long time and needed to catch up. Marie and I both talk very fast, so to an observer it was probably impossible to keep up with the flying words but we were able to.

We talked non-stop until Marie’s doctor was ready for the appointment.  She got called back for her CT-results.  She asked me to join her for them and the ensuing medical discussion.  That is the kind of thing Brother and Sisters do.

I’ll never forget that Marie meeting and the first real-life Stage IV CRC friend formation I ever made.  Since then, these real-life encounters, although spaced apart, have become more common.  I now know so many people online that when I travel, I can usually find an online friend almost wherever I go.

This Week was a Very Special Week for Me

One of the deciding reasons for me to have my lung biopsy done at the University of Michigan was that I would not be able to fly afterwards and we had pre-existing family plans to vacation in my Michigan hometown.  There was a week between my biopsy and the start of the family vacation so how did I fill that time?

By having another type of family vacation!  I became a vagabond and drove around the Midwest visiting friends from my Stage IV CRC life.  Some of them I have met before. Some I have only known virtually.  One of them I exchange texts with multiple times per day, most days, and we have never met in real life.  To make the connection points even stronger, she is a fellow Ph.D. scientist in addition to having early-onset Stage IV CRC. We spent hours together with laughs and tears like long lost friends.  Another is my inspiration in my personal immunotherapy research. I’ll be profiling her on my blog later this year, prepare to be blown away! Others were very close friends from the Colondar 2.0/Colon Club who I try to meet whenever possible – and then tears always flow when we leave each other again. For me, the Colondar/Colon Club connections are especially strong, once again initiated first in the virtual world as we prepared for colon camp and then followed by the most incredible in-person meeting imaginable .  We have an emotional bond beyond words. I wish we were able to see each other more often, those are the hardest ones to return back to a virtual connection.

The amazing thing is that due to the sheer number of online friends I now have, I actually had to turn down meeting many people this trip that I would have enjoyed seeing.  The reason? For this trip, on a personal level, I decided that I wanted to focus only on long 1-on-1 meetings to maximize depth of conversations.  With only a couple of days available, that unfortunately meant a very limited set of meetings. But it is OK, I’ll be back to the midwest! 🙂

The exception was the final night when I arrived in my hometown.  For my hometown, I opened up the meeting to a group dinner.  Only through the power of the internet was it possible to piece together this group of fellow survivors (and related supporters) in my own hometown area. One of the virtual sparks for our meeting each other was a woman I went to high school with who writes an inciteful blog on living life with another life-threatening disease Friedreich’s Ataxia.  We lost track of one another after high school until… via Facebook, we started reading each other’s writings and that instant virtual bond was formed. Tonight was the first time we had seen each other in person in 26 years.

2016-07_Holland Fellow Patient Meeting.JPG

The meetings this week were emotional, exciting, fun, inspirational… words can’t describe the full range of emotions.  We laughed.  We cried.  We celebrated a birthday (which is a huge deal for someone with early-onset Stage IV disease – no bitching about getting another year closer to wrinkles happens in this group…). We had so much fun with one another. One way or another, we have all been surrounded by cancer life & death.  But… we have all persevered despite this and we were together, even if only for a moment, embracing and living LIFE. Words can’t describe the level of shared experiences we have had and because of that, we have bonds beyond belief.

The photo at the top of this post is from a meeting last May, I absolutely LOVE this photo and I think it illustrates the bonds perfectly.  It was a group of us from the Colondar 2.0/Colon Club impacted by early-onset Stage IV CRC, on the dance floor, towards the end of a Stage IV CRC Brother’s wedding reception, sad that we were about to go our separate ways again.

What a special day in May is shown in that photo – what a special week this past week was. A band of Brothers and Sisters with ties that can’t be broken. I’ll never forget either trip – I can’t wait for the next family reunion.

2016-05_Colon Club at Joes Wedding_2_Cropped

6 Comments on “Band of Brothers and Sisters

  1. Great blog entry Tom. It’s true a shared experience creates a bond and I think the life and death of our situation is what makes it so strong, a lot like war buddies. We fight a common enemy, grieve fallen friends and curse or celebrate battles won and lost while we courageously continue to fight the war. I for one am glad to have you in my foxhole! Let’s continue to lob those grenades until air support comes in and blows away cancer forever. In the meantime, virtual and real friendships sustain us, nothing wrong with that. Thank you for the writing, research and inspiration. Got your back my friend, let’s stay on that front line and keep fighting the good fight.

    Liked by 1 person

  2. And your blog, openness and transparency (along with Hollys of course) has given me courage to be more open in my journey. It’s easy to underestimate the ways we can impact each other, and your brother and sisters so how very much we can encourage each other. So cool. Enjoy the “second” family vacation

    Like

  3. Thank you for your sharing!
    Can someone help me?
    My first pathology report said i had wild kras, all set for vectibix,
    and the second pathology report said i was kras mutation…no vectibix
    Now i am sending for a second opinion pathology thru Johns hopkins…..any suggestions? help?

    Like

    • Hi Chia, I have met other patients with conflicting KRAS genetic reports. I am glad you are getting additional medical advice through a top cancer center like Johns Hopkins. Best of luck, -Tom

      Like

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