Monday, September 22, 2014

The Road Ahead

For those of you who read my previous post I must admit to you that I didn't share everything I knew about my condition when I wrote it.  There was a very important piece of information that I decided not to share with the world until I could share it with my children after I was released from the hospital.

"Terminal".  It's such a devastating word.  One I hope you never hear.

I awoke momentarily in the ICU (intensive care unit) out of the narcotic induced haze and overheard a doctor in my room use the word "cancer".  I was too loopy to see anything and in too much pain to respond in any way... but I heard it distinctly before I fell back into my narcotic induced sleep.  It would be two days before anyone used that word in my presence again.  It was a nurse who asked me the simple question "Have any of the doctors actually shared your diagnosis with you yet?"  I responded that I had overheard the word cancer and she confirmed it for me.  I asked "Terminal?" and she nodded.

While this is the 3rd time in my life I have been diagnosed with an incurable disease (Crohns & PSC previously), nothing could prepare me for the phrase "terminal Stage 4 metastatic colon cancer".  We are certain that it has metastasized to the lymph nodes and we believe it has also metastasized to the liver as well. We cannot be 100% sure of this today because the surgeons were not able to get a liver sample before closing up my abdomen during my initial surgery (apparently they were worried I wouldn't make it beyond the 6 hours I was already in surgery).  Our hope is that we can stop/slow it from metastasizing to the lungs (the 2nd favorite destination of colon cancer beyond the liver).  We have found no evidence of lung involvement to date but, of course, cancer cells are too small to be seen so all we can do is hope.

An additional downside to the cancer diagnosis is that it makes me ineligible for a liver transplant if my PSC were to worsen.  Many thanks to those who stepped up and volunteered to be a living donor for me, I cannot tell you how your generous offers touched me and my family (I am crying at the thought as I type this line).  But it is not to be.

One of the few nice things about being ill the the outpouring of love and support that you receive (or at least that I've received) from my friends and family.  Emails, cards, text messages, phone calls, unexpected visits, comments on Facebook/blogs/twitter.  I read / listen-to every single one of them and while I cannot always reply, every one of them lifts my spirits and makes me realize how my life has touched others.  I got one of the most heartwarming voicemails from someone I haven't worked with in several years just yesterday.  I cried when I listened to it.  It's been wonderful to have my parents so close (about 30 mins away) and I've gotten to see a lot of them both in the hospital and since.  I talk to my brother in Michigan every week which certainly brightens my day.  But most of the heavy lifting has rested on the shoulders of my amazing wife, Kristen.  She is my wife, my home healthcare provider, and my savior at the moment.  She is the strongest person I have ever met.  I may not be lucky health-wise, but when it comes to choosing a spouse, I am truly the luckiest man alive.

With two young children at home (ages 6 & 9) Kristen and I had to decide what to share, with whom, and when.  We definitely didn't want them to find out about my diagnosis and prognosis by overhearing a conversation or piecing things together.  So we decided to be honest with them and sat them down last weekend and just told them everything as clearly yet concisely as possible.  They were upset of course, but I've been amazed at how adaptable children are.  We can now talk about it as a family without any hushed tones or raised eyebrows.  It's difficult to know for sure, but I think it was the right choice for us.

As for work, I am fortunate to work for an employer (Pivotal) that provides life insurance, short-term and long-term disability insurance, and is generous on top of all that.  I am not sure if I will return to work or not (or even whether I will be strong enough to have that option).  I certainly gain a lot of my self worth and gain a lot of satisfaction from my work, so it could actually be theraputic for me.  I'm currently on short-term disability insurance and will migrate to long-term disability when that runs out.  I guess I will just have to wait and see whether returning to work is a real option for me.

My prognosis is really difficult to determine.  All you really have is the statistics, but all patients are individuals and have specific advantages and disadvantages that bias those statistics.  For example, the 5 year survival rate for stage 4 colon cancer is about 6%.  But, was the average patient age in that study 30 or 60?  The average survival of a stage 4 colon cancer patient from diagnosis is just over 2 years.  Am I on the high side or the low side of the bell curve?  Who knows?  Obviously, my PSC is a complicating factor that could have a negative effect on my survival rate.  Then again, chemo may actually help my PSC in addition to slowing/stopping my tumor growth (according to my GI oncologist).  So instead of focusing in on a date, I've decided to focus on living the rest of my life focused on the things that bring me joy in life.  Starting with a 6 year old and a 9 year old who need their daddy.


47 comments:

Mallika I said...

Hi Matt,
I'm really really saddened to read this , you are amongst the finest ppl I know @ Pivotal. I pray for you and your family everyday.Be well. Be strong.

Lots of smiles and hugs~
Mallika

Unknown said...

Hey Matt,
It's long long time since we chat on google hangout. You are the coolest manager I have ever had. I will pray for you. BE STRONG.

Anonymous said...

Matt, thoughts and hopes are with you. Glad to see you are surrounded in a circle of love. Get better!!
Richard

Steve Greenberg said...

Matt,

I am speechless after reading this. I am glad we could meet face to face in Denver a few months back. Hearing about your impressive career experiences was exciting and inspiring.

Take care of yourself and your family. Stay strong.

-Steve

grafpoo said...

matt, i think you are a great guy. and everyone i know who has worked with, for, or even near you agrees. hang in there, get well, and soak up all the positive energy we're all sending your way

john

penny BAYLESS Clackley said...

Matt, my thoughts are with you and your precious family. You've always lived life to the fullest. Your happiness and enthusiasm has has always brought so much joy to other people. Stay Strong, love you my sweet cousin

Anonymous said...

Matt,

You are a great mentor and friend. Your life has been huge to so many of us, and now you are impacting us again by how you deal with such adversity. Not surprisingly, you do so with the same incredible grace and love that you bring with you every day to work. I'm honored to know you, my friend!

Here's looking forward to seeing you soon!

Anonymous said...

I am really so sorry to hear about all of this! You are a complete star at work and a genuine;y nice guy as well!

You are spot on with your attitude and focus! My wife was diagnosed with ALS when our son was just 5 years old. All the information and stats said we would have between 2 and 5 years. We ignored all of that and continued to live out lives. In the end, she managed to reach 12 years, against all of the odds! No matter what else is going on, life is all about the steps you take, and you just take each one in turn. True happiness and fulfillment comes from being about to enjoy the 'now'.

I wish you, and your family, all the luck and happiness in the world, and hope that they are able to slow and stabilise things as much as possible so you can continue to enjoy the happiness that life still has to show you!

Take care and let me know if there is ever anything I can do!

Shaun.

Anonymous said...

Matt: You are one of the sweetest people I have ever met. You and your family are in my prays and thoughts. For God nothing is impossible.
Stay strong and stay hunger... Life is a daily miracle.

with all my heart,
Ana Claudia Safar Oliveira - Pivotal Brazil

Sam Herren said...

Wow! I just read this. No words Matt. My wife had breast cancer a few years ago but outcome was good and she's still here. I am a born-again Christian, but I am at a loss except to say that I believe you will be the best person you can be no matter the outcome.

To use your phrase, you are a Rock Star!

Praying fervently for you my friend,
Sam Herren

Dan Carwin said...

Stand strong Quin'. You are a man of pride and integrity and you continue to inspire others. Keep moving forward and reach out if there's anything you need.

Unknown said...

Not a day goes by when I don't think about you and about how lovely it was to spent a nice long evening recently getting caught up. I want more time like that. I may just have to hop a flight. I need another Matt fix.

You are an amazing man and I love bragging about my sweet brilliant cousin. Call me any time. For real.

Anonymous said...

My thoughts are with you and your family Matt. Your outlook on line is amazing and I'm inspired by your thoughts and actions. Best wishes and I hope you and I can continue to make up the "Matt" quorum in any meeting.

-Matt Maccaux

Anonymous said...

Quin,

Stay positive. WE ARE POSITIVE!!
As Wood said, your life has been huge to so many people (me included) and it's so inspiring on the way you deal with all that.. true lesson to all of us.

I feel so lucky to have the best "mentorend" (mentor + friend) ever and I'm looking forward to see you again pretty soon!!

cheers!!!

Fred Melo

Jamie O'Meara said...

Lots of love Matt, you are truly an incredible person and have shared so much with all of us! I think of you often, you are such a good friend.

Jamie O'Meara

wxlund said...

Hi Matt,

Like all the others I'm shocked by the news. Your outlook and attitude, as usual, are such an uplift. You are one of the greatest managers I've worked for and haven't forgotten the job interview when you challenged me to whiteboard how to scale Amazon. Now I'd draw you the picture of PCF architecture :). Your in our prayers. Your influence is so sorely missed in the field and pray for the best outcome possible.

Your friend always,

Wayne

Anonymous said...

Quin,
This is very hard to digest. Why is life so cruel and unpredictable to the most Amazing people?

YOU are the original Rock Star! You have always done so much for your team selflessly and with great humility. A great mentor and a friend.

Our thoughts are with you and the family. Stay Strong!

Arni

Anonymous said...

Quin,
This is very hard to digest. Why is life so cruel and unpredictable to the most Amazing people?

YOU are the original Rock Star! You have always done so much for your team selflessly and with great humility. A great mentor and a friend.

Our thoughts are with you and the family. Stay Strong!

Arni

Unknown said...

Hi Matt,
I'm very saddened to hear this news. Its been almost 2 years since we last talked but you have left an indelible mark on my career. I still remember that day clearly when I interviewed with you in Alpharetta. I was so impressed with how you carried that interview and with your leadership the 2 years to follow working for you. You played a key role in what I do know.

You and your family are in our prayers.

george v.

linda said...

Dear Matt, we have been praying for you and your family daily. We are so saddened by this news but know,from your parents what a strong young man you are. If anyone can beat this we believe you could. We are Dave and Barb's next door neighbors and want to be here in any capacity for all of you, anytime. In the meantime we will continue our prayers for you and your beautiful family.
Our love,
Ken and
Linda
Quod

Unknown said...

I haven't known you that long but I really enjoy working with you and learning all the techie stuff you know. My heart goes out to you and your family and hope you enjoy your time together because it's the moments in life that count the most. Please let me know if you need anything or if I can help you in any way. All the best, Ellen

Tim Cole said...

Matt, you're my strongest nephew and bravest -- and most likely the most intelligent! I can't find the right words to express all or even part of my feelings. Know that I love you, respect you, and pray for you every day. And know that Kirsten and the boys will be in our hearts forever.

Darrel Sharpe said...

Quin-

You are one of the best, and I'm humbled by your perseverance.

I am proud to know you as a friend, bud, and my thoughts and prayers are with you and your family.

Anonymous said...

Hey Matt - my thoughts are with you and your family - I can't imagine how difficult this must be for everyone. If there's anything I can help with, just name it.

Anonymous said...

Matt,

Thank you for sharing with us.

Be with family and friends. Tell your amazing wife "thank you" for us. Hug those kids.

You are in our minds and hearts.

Dave Roberts

Unknown said...

God bless you and your family Quinn. You all are in our thoughts and prayers.

Scott Deeg said...

Matt, you'll always be my gold standard for managing a tech team. Your dedication, energy, creativity, empathy, and integrity certainly inspired me. You make the type of environments where people want to be.

Chris DeLashmutt said...

I have no words to describe my sadness at hearing the tribulation you and your family are undergoing right now. We have been praying nightly at dinner for you and your family since you entered the hospital, and we will continue to do so, Matt.

You have influenced so many people in your career and I am blessed to be one of them. I certainly wouldn't be where I am today if not for you. The skills you imparted to me back in the JBoss days are something I continue to use everyday.

We are just down the road so you and Kristen please let us know if you need anything.

Kick this thing's butt and get well.

Adam Goldberg said...

Hi Matt,

While you and I have not worked super closely since I jointed Pivotal, our paths have crossed a handful of times. Those experiences have always been positive and refreshing - you always have a "can do" (yet balanced with a certain amount of pragmatism) attitude.

One experience that has always resonated with me was from before I actually started at Pivotal. Joe Ventura had invited me to joint the end of Q3/start of Q4 QBR as I just accepted my offer to join Pivotal (about 11 months ago). I met you in that QBR and you shared the evolution of the Field Engineering team.

What really stuck with me the balance of your commanding understand of the reality of things in Field, but at the same time offering repeated "paths forward" and how things would evolve. It wasn't so much what you said.. but rather how you listened and how you responded. I often reflect back to that interaction when I think of you driving the Field Engineering team forward. That is the first thing I thought of when I read this blog post... Matt the dude from the QBR.

I am as surprised as anyone to hear about your health challenges. My thoughts go out to you, your wife and your kids. I can't begin to imagine what you are all going through. I tend to be a "half glass full" guy and as such expect you to be around for a long time to come. You have some challenging times ahead, but you seem better prepared than anyone I know to face those challenges head on.

Please take care of yourself, know that the Pivotal Family is thinking of you and know that I am personally thinking of you. Most often it will be about that the QBR and the role that you play in setting the culture that Pivotal is based around.

Get well soon!

Adam

Josh Long said...

Hi Matt,

I know we don't work too closely at Pivotal, but I've known of your work and contributions since VMWare. I’m not sure what to say, but I want you to know I care. I'm rooting for you and yours.

-Josh Long

Anonymous said...

Matt,
I don't know you well through work but safe to say that your glowing reputation preceded you over here to the other side of the pond. It was a pleasure to meet, even briefly.

Along with everyone else, I wish you and your family all the very best for the future.

Take care.

Unknown said...

Matt,

I respect you and admire the work you did at Pivotal. I am pulling for you and your family. Stay strong and take care Matt!

--Shawn

Unknown said...

Matt, we all love you and are rooting for you! And praying for you and your family. Your strength is unbelievable, but since I've known you all your life, I'm not surprised! You and Kristen are a match made in heaven. Both of you will figure this all out as you go along. For many of us, myself included, you two are a model of how to live life to the fullest. You're always in my thoughts and in my heart! Love ya...Aunt Linda Koziol (aka 'fellow geek')

Julie Steele said...

Matt, I've known about your Crohn's disease for many years, but I've only recently found out how serious your condition now really is. I just read your latest blog here at work, but now realize that this was a mistake, because now I can't stay focused, and want to cry hard. I'm so sorry you and your family have to go through all of this; it isn't fair.

I don't know where you get your strength and courage, but you are AMAZING! I love you very much, so this is hard for me to write now, as I'm wiping away tears and swallowing lumps in my throat.

I really miss you, Kristen, the kids, Dave and your parents. Since I live in the Indianapolis area, it's hard for me to stay connected.

I know I don't have to tell you to "stay strong," since you've already proven that you are.

Please know that I am thinking of you and praying for you.

tbone said...

Matt, your strength is inspiring. Your kids will be strong because of your example. Much love and prayers for all of you.
-Tom Longo

Steven B. Becker said...

Matt, thinking about you and hoping you are doing the best you can. We will keep you in our thoughts and prayers. You are a class act and one hell of a guy !! Be strong for your family !

Steven B. Becker

Anonymous said...

Matt,
I've just heard the news. I don't have words - We will pray for you and your family. I have always known you to be one of the good guys, talented and even keeled and always willing to help. It breaks my heart to read your blog.

Please do let me know if there's anything at all I can do.

Brian Flood
804.399.8401

Anonymous said...

Beyond speechless reading your blog. You are in my thoughts and prayers.
God bless you Matt.

Belinda Gonzalez

Al Sargent said...

Like so many things you've done, I admire your courage and selflessness in facing this disease. You're clearly a great father and husband in addition to a wonderful colleague, mentor, and leader. Your steps in facing this down are an example for us all. Whatever happens, in the future, asking myself, "What would Quin do?" is going to be part of my mental toolbox. Stay strong, as I know you will.

Unknown said...

Matt,
So sorry to hear this. My thoughts and best wishes go out to you and your family.

David Turanski

Mark Little said...

Matt, it's been a long time since we last spoke but I'm really sorry to hear about this. My wishes are with you and your family!

Anonymous said...

Matt,

We've only met a few times, but those times were full of your knowledge, caring, and passion!

I understand some of what you're going through.

You never know what you can do with positive thoughts. I never believed in the normal or short tails, and I'm sure you don't either!

Keep Strong! Keep Focused! Keep Positive! I know you will!
Kevin

Unknown said...

Matt,

Sorry i haven't responded to your post earlier, I just found out recently of your condition.

I'm amazed at your strength and determination and glad to hear the support and love you receive from friends and family.

I wish you all the best for you and your family during this difficult time and hope and pray you beat the odds. If anyone can, I'm certain you can.

All the best!

Adam

Roz said...

Dear Matt,
Truly an inspiring and thoughtful message. It makes me reflect upon the positive way you have informed and inspired since we met in 2012.
My happy thoughts are flowing to you and your family... go ahead and suck the joy out of life!
Roz

Unknown said...

Matt,
We met very briefly at the EMEA QBR this year. I so enjoyed talking with you and realised fast you were a true gentleman, smiling, generous with your time and fun to talk to. I wish you all the luck in the world and will be thinking of you - praying for the best of news. Be strong, enjoy each day. Rupert

Anonymous said...

Matt, we have met briefly at the EMEA QBR and in in the US. Really sorry to read the latest developments, my thoughts and prayers are with you and your family.

You have a lot of friends here @Pivotal who talk about you with a lot of respect, everyone misses you !!!

Suf

Anonymous said...

Darn you Matt. I'm sitting here in a Sky Zone while my kids are trampolining and I have my hood pulled over my face and I'm crying.

I remember us doing a management training together and we did a worksheet evaluating our personal history and what our ideal job was. I remember you were doing exactly what you had always dreamed of doing. I think that's why you're universally respected and admired by your colleagues.

My wife remembers you from Paris and we have you and your family in our thoughts and hearts.

Take care
Steve Griffiths