Saturday, December 12, 2015

Charmed.....

I have a charmed life, I have said it before and I say it now.
Leading up to my diagnosis, the products of my life were brought by hard work, passion, good mentorship, a little bit of luck, and a lot of blessings
Then I got cancer, and the "charmed" part seemed to have ended.
Since diagnosis I have felt love like I have never felt, love so big I didn't even know it existed. Our community has come together to surround us with whatever we needed.
I have top notch medical care that has been very effective, in fact... I don't think I could ask for a better response from my body to the treatment.
And then there is my family.  
Regina is my rock and my cornerstone, she loves me with a depth that is a deep as the ocean, never a doubt that she has my back through thick and thin.  
My daughters love and inspire me giving me very strong reasons to live.
So ya....I have a charmed life.

Crisis Management and Disease Management
When you are first diagnosed with cancer, your world turns upside down in a manner 
that only somebody else who has heard those words themselves can understand.

I was in crisis for several reasons.

1.  Psychological Stress 
It overtakes your every waking thought, all of the unanswered questions put in front of you. Cancer takes away the control of your life in nearly all aspects.  You struggle to keep your chin up and you try to protect  those closest to you from the terror in your heart.  You try to keep a level of normalcy in your life to keep sane, but at the same time you are far from your "A" game, how could you possibly be anywhere near it? You begin to understand that pride is bullshit, and that humility rules all, and will be essential in order to get through this.  
When is the last time you really thought about your mortality? 
When is the last time you thought about your own funeral,  about your wife and kids forging through life without you?  
Those are daily occurrences for some of us, I try very hard to feed the "good dog" in my head, but some days are still rough.
You suck it up and ask for help, you let the emotions flow no matter how painful they can be, you fight with everything that is inside of you because there is no other option. 
This is life and death, there is a disease inside of my body and it is trying to kill me.
I cry often, but you probably don't see me, its a pretty small circle that witnesses that event.
The tears are mostly driven by seeing the effects of my disease on my family.
I try my hardest to appear strong, and that I have my shit together.
I attribute my ability to hold it together to my support systems, people who care about me, and the grace of god.

2.  Physical symptoms of cancer.
Part of the crisis is feeling poorly.  For me it was a partial airway obstruction from a tumor, and a persistent dry cough that made me miserable.  From the point of diagnosis it only got worse as the untreated tumors were growing fast.   I started chemotherapy June 25th and it was probably 2 weeks into treatment that I started to get relief from the cancer symptoms, the tumors were shrinking and the impingement on my heart and lungs was lessening.  I was still having heart palpitations and near fainting episodes deep into July, but by August it seems like most of the "cancer symptoms" had subsided.
Except for that blood clot they found in my lung on August 5th, that's a little bit of a problem, in fact.... a potentially lethal one at that.
I was promptly put on daily injections of blood thinner and instructed not to do anything that might make me bleed....so no MMA fighting for me for awhile.
I will be on blood thinner for at least 6 months to break down the clot and keep any others from forming.

3.  Side effects of Chemotherapy.
The double edged sword of chemo is that it helps you with the cancer but it is a toxic poison that is being pumped into your body, and this has side effects.
Heavy fatigue and nausea led the list from the beginning but were pretty manageable with rest and medications.  Treatment is every 3 weeks so you get your ass kicked, then you start to feel closer to normal, then its time for your ass kicking again.
My hematocrit(red blood cell count)is normally 45%, slowly over the course of time, the chemo chips away at that. By mid September my crit was down to 24% and my oxygen carrying capacity was basically cut in half, even the lightest exertion left me gassed.
At this point my counts were too low to get chemo so I got a blood transfusion instead.
The transfusion and the new regime(only 1 type of chemo) left me feeling better.
My blood counts have continued to climb and crit has leveled out at 38% for now.

At this point I feel like the "Crisis" is under control, physically, I feel pretty darn good, psychologically, every day is still a challenge but I find my head in a pretty good spot most days.
I am trying to have mastery over the things in my control as I move forward towards......

Disease Management.
This is the matter of controlling the progression of the disease and keeping in check so that I don't end up back in crisis.  This consists of my line of treatment with SCCA, second opinions from western medicine, and all of the alternative modes that I have engaged.
These are primarily outlined in my Remission Mission
Honestly I could live under the current circumstances for a long while, I have found a way to manage treatment and side effects that allows me to be pretty functional, and able to many of the things that I like to do.
I continue to seek out help from my therapist to help the psychological side of the equation, which as I mentioned before is huge.

What else is up?

The City of Olympia has accepted my occupational illness claim and it has been approved by Labor & Industries.  This is a really big deal, essentially my cancer is considered an "on the job" injury and I will get all of the benefits that come along with such a ruling.
Thanks to our union leaders and the WSCFF for getting the presumptive legislation on the books to protect firefighters. 
Thank you to my attorney Ron Meyers and his staff for making "action" happen.
The support of the Olympia Fire Department Administration and the City of Olympia has also been crucial with this process.

I just returned from Denver Colorado.
I went there to see Dr. Ross Camidge at the University of Colorado who is a world renowned expert in the very rare ROS1 genetic mutation that my cancer has.
When it comes time to change anything about my treatment plan I want all of the information and knowledge that I can get so it DOESN'T feel like another crisis.
When or IF my current line of treatment stops being effective, the next phase will end up being the clinical trial immuno-therapy or targeted ROS1 treatment.
I want to make sure the plan is what is right for Jim Brown, this is my story....
Dr Camidge was very encouraged by the progression of my treatment and the reduction and stabilization of my disease process, they said they had to look at my scans pretty hard to find disease.  He gave me some great information to take back to to DR Eaton and SCCA.
I want to thank my brother Greg Keller for attending the appointment with me and being another set of ears, we both heard some really good things today.
Thank you to Boulder Firefighters Local #900 and Mike Rangel for helping me out with transportation from the airport on the trip.

CT Can next Tuesday and Clinic/Chemo Thursday.

Prayer Request:
Complete healing from Metastatic Adenocarcinoma
Continued mental peace for myself and my family.

Thanks for taking time to catch up.

Big Daddy
#holdfast
Back on the drill ground with my brothers and sisters....
My brother Tom Wright from Lacey Fire, fighting brain cancer, we are stronger together.