Sunday, May 24, 2015

The Lay of the Land..

So it has been a little over 2 weeks since my diagnosis, and my head is still spinning.
I still wake up everyday hoping that the recent events are just a bad dream, clearly this is not the case.

I felt like it was time for an update as many things have transpired recently.

I truly have to say that I am humbled by the overwhelming support directed to myself and my family since the diagnosis of my condition became public knowledge.  I have many times been brought to tears by amazing acts of support and generosity.
Words truly do fail but my heart is full and my spirits are are high as I embark upon the biggest challenge of my life thus far.
One of the key pieces to the outreach has been the contact from cancer survivors, many of which were told of a much more dismal prognosis than myself.
They wanted to tell me their story and assure me that they are still here living life.
My Fire Department brothers and sisters have circled me with love and support, this support starts at the top with the city manager and works its way down through the fire chief and the rest of my OFD family.  
Bill Hoover paid me a visit and introduced me to the resources provided by these guys.
People I have never met reaching out with words encouragement, stories of victory over cancer, prayer, and generosity beyond my wildest dreams.
Chris McGovern had stickers produced to show support..... they are everywhere.
I truly have an army backing me; with my army of supporters there can be no other outcome but victory.
Some bike industry folks wrote a nice little piece here CX Magazine
Another group of friends set up a FB page as a communication portal: Hold Fast Page
Gift from Steve Fisher during the Tour of California
New friend and ally- Monster and Sea- Troy Nebeker

The "No Bullshit Zone"...
This is where I give you straight talk about my disease and the battle at hand.
If you read my first blog you know the circumstances that led me to to the Dr to get checked out.   
On April 27th, I had a bronchoscopy and biopsy to identify the abnormal tissue noted on my CT scan.
The results can back as Adenocarcinoma (Lung Cancer)
My disease is being categorized as Stage 4. 
Stop right there....
Don't you even dare look up any statistics, they do not apply to me, so don't waste your time.
It is Stage 4 because the cancer has migrated to multiple parts of my body.  My PET scan indicated cancer in my chest/thorax in lymphatic tissue that is actually OUTSIDE my lungs.  In addition to that, there is cancerous activity in my abdominal cavity and in one of the bones in my pelvis.
This means that I am not a candidate for surgery or radiation treatment.
Imagine pulling a weed in your yard. You got that weed for now, but there are spores all around waiting to take up root. Eventually unless you do something, the weeds will pop up all over.  
What you do is apply weed killer to the whole yard to eradicate the problem.   
In my case the cancer has set up shop in several areas right now but it is also circulating in my system looking for a place to proliferate. Chemotherapy is the weed killer that will be administered to my whole body. It should kill the tumors already growing, but it will also suppress/kill the cells circulating.
What is the GOOD news here
Brain scan is clean, no major organ involvement, liver, pancreas, etc..
Next Friday (5/29) I will undergo a procedure called a Mediastinoscopy.
Through a small incision in my neck they will extract tumor material to do further studies on the genetic make up and mutations of my cancer. This will help direct the specific type of Chemo that I receive and also determine my eligibility for clinical trials.
PET Scan: Left: Chest/Lymphatic Tissue Upper Right: Abdomen- tumors Lower Right: cancer in Pelvic Bone

My Physician Team:
On May 18th I saw a very highly esteemed surgeon at UW for a consult: Mike Mulligan I met him when my father was battling cancer. We had made a connection then and I always said if the need arose I would see him.
He will be doing the procedure next week.
I also wanted to know if he were in my shoes- what would he do? who would he see? what next steps would he take?   He said if he had my disease he would see Dr Keith Eaton. I said DONE...make it happen doc, and he did.
As my session ended with Dr Mulligan, he could see that I was choked up.  He got out of his chair and walked over to me, put his hand on my shoulder and assured me I was not going through this myself-  that he was there with me, and that he was indeed praying for my recovery (not the type of thing you expect to hear from a scientist like this) but I believe him.

Dr. Keith Eaton
is my new oncologist and I will be seeing him on June 3rd to map out my treatment plan.  If you haven't watched his video, please do... 
You will instantly recognize why he is the right guy for me. He is a cancer survivor himself with a wife and daughters he loves very much. When I sit in that exam room he is going to know exactly what is going through my head and what I have a stake here. 
The other promising component is that he had to go outside of the SCCA system to receive treatment.  This gives us confidence, in fact, that Dr. Eaton will scour the country and the world to find anything that might be of benefit to me. He will send me to wherever the most promising treatment can be found, if that is what is best.

With regards to further timelines I should be starting treatment the week of June 8th up at SCCA.  Most likely I will do 4 cycles (about 3 months) of chemo and then have a repeat PET scan to track the progress of my treatment.
The tissue samples collected May 29th will be studied for genetic mutations, and SCCA can use this information to be very specific with regards to my chemotherapy and also will indicate potential pathways to clinical trials.  Cancer treatment has made leaps and bounds in the past few years, there is a lot of good stuff out there. 

My Plan:
One of the things I try to teach the Rad Racing kids is this:
"Master everything that you have control over, then when something comes along that you can't control, you will have the preparation, poise, and confidence to deal with it".
Things I can control:
1.  My level of education regarding my disease.
2.  I can push my providers, and ask the questions to push my treatment.
3.  I can keep myself physically fit and strong.
4.  I can control my nutrition.
5.  I can control my sleep (to a certain degree).
6.  I can have a positive mental attitude and the mindset of a warrior prepared to do battle.
                            I accept nothing other than victory in this battle.
7.  I can have the humility to accept the help offered to me by my network,  and the knowledge that when they are helping me it makes them feel good and that they are making a contribution.
8.  I can have the humility to understand and accept that there is a greater power at work here and that the prayers being lifted for me will have an effect on my outcome and that a certain component of a miracle will be needed for me to come out on the other side of this journey. 

Things I can't control:
1.  The progression of the cancer in my body.
2.  How my body will react to the treatment.
             I'm feeling pretty good about the things I can control verses the things that I can't.

The Lesson:
As I move forward in this chapter of my life I feel an obligation to approach this with class and character. I also feel obligated to share the lessons I am learning along the the way.
Since my diagnosis became public I have had an outpouring of love and support that has been nothing that I could have ever predicted.  One beautiful component to this has been hearing from people I have touched over the years, and hearing stories about how I taught them, motivated them, or inspired them along the way. 
Hearing these stories fills my heart and makes my proud of some of the work I have done over the years.
But here is my question....Why wait until somebody is sick to tell them these things?
This is my challenge to you:
Pick 3 people who have impacted you in your life.
In the next 48 hours call them (or write them if you can't call) and tell them the impact they have had on you, tell them what their mentor-ship and guidance meant to you. 
They need to hear it, and they need to hear it now.....

Disneyland has always been a special place for our family.
When each of my daughters turned 5 they got a 3 day, one on one trip with daddy to Disneyland.   
3 days, whatever that 5 year old girl wanted to do, no cell phones, no email, nothing but pinpoint focus on those girls.  Those 3 trips were some of the greatest moments of my life.  This spring, prior to my diagnosis, I had decided that I was going to take Phoebe and Lilly one more time while they were still young enough for it to be magical.   
Once we got my diagnosis Regina suggested we turn it into a whole family trip.
I dismissed it initially, primarily because of costs and the unknown effect my illness was going to have on our financial situation.
Then an amazing thing started to happen...... friends, neighbors, even complete strangers stepped forward and essentially completely rebuilt the trip that I had planned. 
This new plan included our entire family... and included some significant upgrades to the original plan.  I am going to let those friends remain anonymous per their preference- but I am going to give a shout out to the Anaheim Firefighters who stepped up and provided park passes for my entire family....
Is it going to be a #baller trip?  Lets just say we are being picked up by a limo Monday AM for our trip to the airport and the rest of the trip is going to follow a similar theme.
                Let me make one thing clear....This IS NOT A "Make a Wish" foundation trip! 
This is recharging our batteries and having some amazing family time before I put my head down
                                                  and KICK SOME ASS!

The Tools: 
The Most Amazing Wife Ever 
3 Amazing Daughters
Good Medicine 
Strong Mind
Strong Body
Strong Support System
A Miracle (if you are praying for me I accept and believe in the strength of your prayer)

BTW yesterday I gave cancer the finger, and flew to Spokane to see my RRNW homies, and ride a lap with one of my favorite little rippers... 

Ok then.....Lets do this.


Sunday, May 10, 2015

Dream interupted....

Those who know me, have heard me many times refer to my life as..... "Living the Dream".
I do live the dream, I squeeze out every bit of life that i can.
My dream has been interrupted by an unwelcome guest.
I have been diagnosed with Lung Cancer..... Adenocarcinoma to be specific.
It's very serious, and it has a bit of a head start on me.
The symptoms that landed me in the doctors office were started about 8 weeks ago, and included stridor, shorteness of breath when exercising at a high intensity, and a dry persistent cough, eventually the stridor was happening all the time.
Of course I am a knucklehead and the symptoms scarcely slowed me down, shit 3 weeks ago I rode a 92 mile Gran Fondo at Sea Otter... IDIOT!!!!
After returning from California I initiated getting to the root of the problem because it wasn't getting any better, and actually at Sea Otter it seemed a little worse.
There were several other things that fell into the differential diagnosis to figure out what this was, Lung Cancer was never really in the mix,  and my doctor was as stunned as I was.
I have been doing my job long enough, and seen enough "bad things" happen to good people, to know, that there is no need to waste a lot of energy on the "hows" and "whys", there is no explanation sometimes.  The only true risk factor that I carry is my job as a firefighter.
Our family has a rough road ahead of us, I told my daughters yesterday and it goes down as the hardest thing I have ever had to do, but we will get through this.
I have given myself a couple of days to be stunned, crushed, sad, and accept my circumstances.
I am now putting on my game face, and I am gonna do what I do....Kick Ass!!!
The next steps are, more diagnostic testing with PET Scan of my body and MRI of my brain on Monday.  Next Friday May 15th will be my first consultation with Oncology and Radiation.
My brother Andy is coming in from Boston to be there with Regina and I as we map out a plan.
We will be initiating immediate treatment here in Olympia while simultaneously seeking out 2nd opinions on treatment options from SCCA and other well regarded cancer treatment centers.
I have the full support of the Olympia Fire Department and they are willing to do anything they can to support us.  Because of the administrative nature of my new position I should be able to work as I go through treatment.
Our family will indeed need support through this next chapter but we really don't quite know what our needs are going to be.  I am not too proud to ask for prayer though.
We are going to do everything we can to maintain a level of normalcy to our lives, I am gonna go to work as i am able, ride my bike, go to soccer matches, track meets, laugh, live life.

I got these wise words from a friend a couple of days ago:

These things I promise you:
Statistics do not apply to me.
With my family by my side I can face anything.
I will fight this with everything I have inside of me.

-Big Daddy