June 9th, 2009 – The Day My Life Changed – “Year ONE on the Board”

Thanks so much for stopping by today! It’s so good to see you this morning. Pull up a chair and sit awhile with me and let’s get caught up on stuff.

June 9, 2009 was a very significant day in my life. It changed my life forever in ways that I could never have forecast or thought was even possible.

What’s the significance of this day, you ask?

It was the day that I found this Board – and all of its wonderful residents whom I’ve become so closely attached to. Today, I celebrate being here with you for one full year of service and dedication.

It seems like only yesterday – yet it seems like a lifetime too. A lot of you know this story, but for those who do not, I’ll give you the Reader’s Digest version of it.

From the time of my Dx in June 2004 until I found the board in June 2009, I walked the Road of Cancer as a man lost in the desert without an Oasis to quench my thirst.

I went through the surgeries, I did the chemo treatments, I struggled with the recoveries and side effects – and I had no one to talk to about it. For those I did try talking to, it was like talking to a “Deer in the Headlights.” You see their eyes glaze over, their feet shuffling nervously, and you knew it was time to move on and just keep it to yourself.

I had no sounding board in which to bounce my thoughts off of to see how I was faring or if I was normal. Was I a freak? Does it take this long for me to recover? Are these side effects supposed to be like this? Is this area supposed to be burnt red like this? Why am I so tired? Is it supposed to last this long? Why do I feel this poorly? When will it ever end?

Early on, I accepted the fact that I was a “science experiment” gone horribly wrong, but yet my medical team never sought to give me any guidance or forewarn me for what I was going through. I learned the HARD WAY and took my beatings over and over and occasionally I would get a snippet of “Oh, yeah, that can happen to you.” I took mental notes and vowed that I would not let anyone go through this alone again – ever.

I had searched for outlets for me to try and become a Patient Advocate. To help others who were about to walk down the same trails I had been on. It became my mission to help others avoid the fate that I had experienced. And if I could not prevent it, perhaps I could help “soften the blow” and give them a heads up on what to expect – thus, taking away some of the “mental ping pong” I had gone through, just alone with my thoughts in those first 5-years.

As I was researching thoracotomies for my first lung surgery, I came across the board – one of my searches took me to the Lung Board of the house. I read through there and then backed out and found the Colorectal Board.

Once I clicked on that tab, the light bulb went off and my world turned over – I knew I would never be the same. I was a Semi; in heart and soul and knew that my “bread and butter” was right here in front of me.

I saw the same questions I had been asking myself all of those years – more importantly I thought I knew the answers, LOL:)

I read a few posts that morning – registered immediately – and then crashed into Our World, like a bull in the china shop, and immediately began posting help on the topics of the day.

I think you can see now why I am so passionate about what I try to do here. I found the board after the fact – meaning I had done most of my surgeries and treatments by the time I had come here.

But I thought, I can certainly use what I’ve experienced and try to help and support others who are just starting out and who are in the middle of their fights and looking for some help. I thought I’ve finally found a place where I can do some good – or at least try to. I can only imagine what the community thought of me then. “Who the flip is this guy and what’s he got to say?”

I thought I had a lot to say (LOL) and I just wanted so much to be a part of all of this. I saw the relationships that were formed – the knowledge of the group – the love and friendship being offered – and I thought I’ve got to get in here. I was like the annoying house guest who shows up on your doorstep with his bags, but never leaves, LOL:)

I just knew that I wanted to be a part of this community – to finally be accepted somewhere – and I learned how to love and be a friend and have friends right here in this virtual world.

The Colorectal Board ROCKED – and still does! This place was happenin’ and the people and the personalities that filled the halls here were mighty contagious – and I “liked it, I loved it, I wanted more of it!”

I was welcomed in with open arms – I unpacked my bags and have been here ever since – and it’s still one of the proudest things I’ve ever done. I know there is a good deal of talk about “virtual friends” and the virtual world etc.etc.

I can honestly tell you after a year, that the relationships that I’ve formed here are the truest and strongest ones I’ve got going. They are very, very Real to Me. Virtual does not matter to me – the only thing separating Virtual vs Physical is your address. Otherwise, I’d be on your doorstep knocking on the door to your house, instead of knocking on the “door to your heart.”

I don’t think I’m any different in person than I am here on the board. Jennie, Eric, and Jan might have different ideas, LOL:)

I agree that being in touch physically – talking with someone – reading the expressions on their face – getting a good hug, you know the kind where electricity passes between your bodies, is not quite the same virtually as it is physically, but we are each separated by distance and our cancer battles and sometimes logistically, we can’t be there in person for one another.

Many of us have met each other and discovered that the walls between Virtual and Physical is only a myth – if we let each other into our lives, the relationships form and become solid over time – they become real. After all, I share your Fears, your Tears, your Trials, and your Smiles. I know you have felt mine as well. Am I wrong in this?

Truthfully, you guys have done so much for us emotionally and physically, that it’s really hard to believe. How can folks you have not met be so kind to you? How can they care so deeply? Why do we do the things that we do for each other?

Well, good people are just that – good people. And you take those anyway that you can find them – they are a treasure in the days and times that we live in today. When you have a relationship like these, they have to be nurtured – who knows, they might turn into a lifetime friendship.

One cannot close the door here without regrets of knowing what could have been. My back pocket has never been lined with an abundance of people in it – now, I’ve got folks scattered all around the U.S. and I’ve got friends in other countries. That’s some remarkable stuff – it makes me feel connected and knowing there is a lifeline out there should I ever make it to your area. You would know you would not be a stranger.

You all have taught me a good many things about human nature – what it is to have a friend – what it takes to be a friend – how wonderful it is to share the hurts and the joys in our lives together. And to stick with it – you never leave your “wingman.”

Remember MaBell’s advertising slogan back in the early 70’s?

“Long Distance, it’s the next best thing to being there.”

Well, that sums it up for me! I’ll be there one day if you let me in when I knock – but if you don’t, the Board is still the next best thing to being there. It is for me anyway. I love you guys!

Sharing your lives and me sharing mine has brought about many feelings over the past year. I realize the world can be a cold, cruel place sometimes. Being able to come to this place of refuge and “dip from the waters” and be renewed quenches the thirst that I had all alone in the Cancer Desert, desperately searching for validation and for someone who understood my plight and would listen to what I had to say or felt.

And along the way, I’ve found that it’s not all about cancer – we get to talk about many fun things too – and it’s very reassuring and heartwarming to see your avatar and your name on a post – just fits you like a warm blanket. I still think I see your lips moving when you talk to me, LOL:)

My first post that I opened was “Sundance Says Howdy From Texas”, June 22nd. I’ve read that post again and it’s great reading to see how I started and where I’m at now.

Guess who was on the post? Shayenne (my Chicky), Daydreamer (Sherrie), Annabelle (sweet Kim), Gail (dearest Toots:), Luv3jay (Sherri), and Lisa (California sunshine:)

Everyone was still trying to figure me out to see if I was real or something – it takes time to build relationships, but these ladies opened their hearts and welcomed me in. The guys were like “Get this Texan a taxi and get him outta’ here.” LOL:)

The list has grown quite a bit since then and it’s been just wonderful talking with all of you on any given day of the week. I know we have to take the good with the bad, but I still feel this is the place to be. The good times far outweigh the bad times, IMO

I wanted to take a minute and talk about a couple of Personal Milestones that I’ve been able to achieve during my Cancer Journey.

I was Dx’d in June 2004 with rectal cancer. Today is June 2010. That makes 6 years in my current fight, which puts me on a pretty short list of hard core vets – I’m still new to the board, but not new to the Cancer world.

So, I celebrate 6-years of no recurrence in the rectum or colon – we know five years is the marker. And I also am celebrating a smaller milestone, in the fact, that I’m 2.5 years with no recurrence in the liver….getting past the 2 year mark is the first good marker of being clear in the liver and expecting no recurrence…knock on wood:) I’ve still got another 2.5 years to go here, but if I can make 5 years out from that, I could be sitting in pretty good shape.

It’s significant to me, because they told me Christmas 2007 that I would not see Christmas 2008 and that even with surgery, Cancer would be GUARANTEED to return within One Year. Yeah, right, well you don’t know Craig:)

They made me mad that day. I had an internal fury just building after they told me that. I was polite, but deep down, I was thinking “I’m just gonna’ show them!” Three different doctors including my surgeon made these “predictions” and I thought I’m going to show all of you that I will be here a year from now.
June 2010 and I’m still here. I’ve seen 2 Christmases since then – anyone remember Santa Craig, LOL:)

So, just tell me it can’t be done and then get outta’ the way – when you got to war with Craig, you better pack a lunch and bring all of your troops – gonna’ be a long one:) I might not win every time, but you’ll know that you were in a fight.

I managed to bloody Cancer’s nose a time or two – and what can bleed, can be killed. Cancer is like any insect or rodent – you just can’t let them “in your house.” You’ve got to get rid of ‘em.

I know all of you are tired of fighting (me too) but I like to think of myself as proof that you can beat the odds and come out on the other side of life – it ain’t easy, but the good stuff never is.

I’m still waiting to get hit by that mythical bus that Phil talks about, but as long as it’s not Cancer, stamp my ticket. Just did not want Cancer to be the epitaph of my life if I could help it.

In the event, that I did not come out on top, I was prepared to put on my tombstone my favorite cancer slogan: “Cancer does not define me, but how I lived and fought Cancer Did define me.”

Truthfully, Cancer had me on the ropes, but somehow I was able to persevere and throw a couple of roundhouses to his jaw and send him backward to the canvas. I do respect him, because he is a formidable adversary, wily and conniving, who would take me from this place with a blink of the eye, and not think twice about it – but not without a fight, LOL:)

HO HO HO! I had a real good time this past Christmas ’09 playing the role of Santa Craig. It was pure, unbridled joy and being able to hear your stories, and seeing your smiles, and knowing I was a part of your holiday celebrations, was a defining moment in my time here on the board.

The most amazing thing about that whole experience for me, was to see for those few weeks, the pain in your life, being replaced with joy in your hearts by a simple act of love

I saw the “CHILD” in all of you – momentarily free from your Cancer worries – free to just enjoy the moment and share it with your families. The Board had a flavor of the holidays as people were keeping the secret until the “packages” arrived to all the good boys and girls in Our World. It was fun trying to see people wondering what was going on? And what was it?

For those of you who were not here, we were exchanging Christmas cards. I got the bright idea (right after DaVinci #1) that I was going to also make a CD of some of my favorite Christmas songs and send that inside the card, so that when you opened it up, Santa Craig would have given you a present:)

The response was overwhelming and very gratifying. Santa was a busy man, so he did some outsourcing and dubbed me Santa Craig and left me a couple of his elves and a couple of his reindeer down here in TX, so I could help him “make these deliveries” to the folks on the list.

As the word spread on what was inside the cards, folks began requesting Santa Craig to make one for them and hotshot it over to their houses, so they could have them, just in time for the holidays. Me and the Elves worked overtime to make it happen – you know Santa has a pretty tough job after all:)

Next thing I know, folks are posting all over the board about how they loved the music, and were playing it in their houses for dinners and visits. I was getting stories about people being in bad moods, but put the CD in their players and their personalities changed in an instant. The songs on the disc are the “old school” classics that we all grew up with as kids, so it has magical properties and melts away the Grinch in us.

And that’s what I wanted to happen – for your worries to go away for a moment or two, and you could just sit back and enjoy the music and let it take you back to the good ol’ days – long before cancer and adulthood – back to a time of fun and innocence. Essentially, it was a Time Machine that transported you back to the Days of Yore.

Everyone was so appreciative and enthusiastic and the boards flowed temporarily with the Elixir of Life and for a brief moment, Cancer was not our only topic. It was a magical time and one I will never forget – I will hold it dear to my heart always – it meant so much to me to be able to make a small difference in your lives, if only for a brief moment – it will last a lifetime with me and I hope with all of you as well.

Who knows, Santa Craig may come riding up again this year and drop one “special packages” down your chimneys, for those of you who did not get one last year. We’ll see if anyone is interested in that as the year winds down.

The most hurtful time for me on this board was just as 2010 got under way. We were coming out of Christmas and wishing everyone a Happy New Year 2010…and then we began losing valuable members of our beloved community. We lost three dear family members in a row, right out of the gates and then some political mess got started and some of the family began turning on each other.

It was ugly – made me sick to see my friends who were getting along so well just a couple of weeks before, now at each other’s throats. Each time you logged on the board, it just intensified and got uglier – the nasty side of human nature, which does not come around here very often thankfully.

I thought “What just happened?” “And how did it change so quickly?”
Aside from seeing my peers in-fighting, we had also lost Roy (shrevesbud) to his cancer fight. His passing got lost and he did not get the posts he needed, due to all of the brouhaha. Only a few folks were aware of the notification and posted condolences, but he passed off the board and into the night without a lot of fanfare due to that mess.

This hurt me deeply – Roy was a person and I had talked and tried to meet around Thanksgiving, but he was busy visiting relatives. He was going to come by on his next trip to Dallas in the spring – sadly, that day never came.

All of the bickering and squabbling, sobered me up in a big way – made me evaluate my place on the board – made me feel like all the work I had done was for nothing and meaningless.

It was the closest that I came to walking away from the community that I had come to cherish. And for a day here and there, I did drop out, but like a train wreck, I kept coming back, hoping the storm would eventually pass.

Things finally settled down – we lost a lot of members as a result of the fallout and many good friends. And this has also been a sad year with so many (too many) of our family members passing away.

This year was my first experience with Death on the board – I hurt so badly I opened the “Life and Death in our World” post to express what I was feeling and what others might be thinking. It helped me to sort out those feelings. I could finally understand the pain and frustration that the “Old Timers” experienced when they lost their friends on the board.

I’m the type of a person who is “In for a penny – in for a pound.” Meaning, I love in a Big Way and cannot do anything half throttle. I develop a relationship with you and will be your friend to the end. So, it hurts when you lose someone – part of you dies right along with them.

But, I still contend that it is “Better to have loved and lost – than to never have loved at all..” Losing all of these folks was extremely hurtful – but I think of how empty my life would have been not knowing them and who they were and what they meant to all of us.

It’s a chance I would take over and over again – no regrets. Sometime people can live a lifetime in a very short time and I know that I’m a better person for having known each one of you than if I had never met you.

I went through so much of my life being guarded. Tragedy has been my middle name and throughout most of my life, there are very few people who I would let inside my heart. I did not want to get hurt anymore

But I discovered two things wrong with this approach. First, by not giving of yourself, by not reaching out, you guarantee that nobody will hurt you. On the flip side of this equation, by not reaching out and exposing your heart, you don’t get hurt – but you never GROW either.

And while reaching out can get you rejected, can get you hurt, I have found (again on this board) that what comes back to you cannot be measured by the things we are taught to revere and treasure.

The risks can be great – but the rewards can be so sweet and fulfilling. To me, it’s the only way that I want to live. I want to know you and I’ll take whatever comes our way – but at least we’ll do it all together, right?

So, I’ve learned to throw myself out there – for the world to see – to use my life as an example of what to do and what not to do – and what can be achieved, if you are open to all the possibilities that our lives have to offer.

To show the frailties and fallibilities of a man, who is just trying to figure out Life as much as Cancer. And to show the joys and wonderment of discovery and experiencing what it is like to be human – and not be too afraid to talk about it openly….and certainly to not be embarrassed about it.

I suppose I’m sort of like the Phoenix – rising from the ashes of Cancer to be re-born and become something stronger and better than I was before.

My dear friend Patteee used to tell me that was what she liked about me – was my willingness to “put myself out there” as she so fondly said. She also used to say that I have a “Cut through the crap gentleness that people can see.” Oh, my Patteee sure had a way with words. I miss you, Patteee:)

The Board represents many things to me as I pause to reflect on my past year here. First and foremost, our mission is to provide quality information and support to the newly diagnosed, who come here afraid for their own lives or that of their loved ones.

We strive to be a port in the storm, when things look so bleak and hopeless. We blaze the trails and shine the light, so that others can follow in our footsteps – knowing that they will never walk alone as long as we leave the lights on for them.

And by doing so, we become the Circle of Life – we pass the torch down to future generations of fighters, who will do the same for the next generation – and so it goes – our stories are their stories – our legacies will be written and the new folks will write their own. So let it be written – so let it be done.

And I think the Board is so much more than a Cancer board – it is a Life board – it is a Friendship board – it is a Family board. We know Cancer is the #1 topic, but it’s good to be able to share other aspects of each others lives too – that’s what attracted me so much to this place I now call home.

It just seemed like a happy place and it’s the people and the personalities that I treasure so very much – I feel comfortable here and it’s great to talk about other things from time to time as well.

We all know we can gather information from a great many sources, but it’s the people and the personalities of Our World that make this place just hum and click. And when it’s hot, baby, it is so super contagious and you can easily get swept up in it. It’s great, am I right?

I know more about each of you than I do anybody else in this world – I get up everyday thinking about you and go to bed wondering how you are. I think that much of you to do that and I know you are all doing the same – that’s what makes this place so wonderful.

That’s when the Board is at its “collective best.” United as one – looking outside of our own situations and thinking of others – and being there for each other in good times and the bad times. Without our membership, the board would be a quiet place. It’s the people that make this merry round go in circles – and when I see it happening, it just makes me smile so big and is so comforting to witness and be a part of.

I’ll always be a Semi; - I’ll live as one and die as one – we’ve all paid the price of admission for this roller coaster ride – you can’t say we were shortchanged It has been one he11 of a ride – only one ride to a customer – and please keep your arms and feet inside the car while the ride is moving, LOL:)

One thing I am sure of – the Board will live on – and will continue to do the good work that the American Cancer Society and the Cancer Survivors Network created it for. To be able to help others in need, as we once were in need.

It is one of the greatest gifts that we can give to each other – the other gift, being Our Time that we give to one another. The people may change, but the mission will continue as long as there is a need.

For now, we are all together, at this time and place in our lives – when we look back, I think each one of us will be proud of the contributions that we made here and the friendships that we’ve formed. I know that I certainly feel that way about it.

We know it is a CHOICE to be here and I am glad that we each choose to be here when we can.

I want to thank you again for taking your time to share my reflections on my 1-year celebration on this board with me today. It means nothing if I don’t have my friends with me. If it were not for you, then I’m just back talking to myself.

Stay strong – keep fighting – heal thyself – be well.

May our next year together be even better than the first one:)

(((Semis; 4-Ever)))

-Craig