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.

Community
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.

Chemotherapy:
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:
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
Love
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.

Big Daddy #HOLDFAST

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