Thursday, February 12, 2015

10 months and nothing has changed

   Ten months at zero. Yesterday I recieved a 2 month PSA result. My numbers have been undetectable since last April. 
   Common knowledge to my readers, it has been almost three years since I completed provenge therapy and 21 months since starting Zytiga. 
  I started zytiga in August of 2013. My PSA had risen to over 30 and I was just a little nervous about watching it rise. I could've waited. There was nothing to speak of on my scans that would warrant alarm but I am just not wired in ways that would allow me to watch the numbers rise and do nothing about it. 
   A month after starting Zytiga my numbers had dropped by 40%. It was a trend that would continue each and every month thereafter until my psa level was no longer measurable. My side effects were mild. I had slight nausea for the first couple of months but after that it diminished. I also had a slight increase in number and severity of hot flashes. They have not diminished but after 9 years of hormones I would not know what to do without them. My liver function appears to be normal. All of my blood tests remain dead center of tolerance. My oncology doctor expected Zytiga to last a year. It has been 21 months. Although he expects it to stop working any day, I intend to take this drug the distance. Provenge has my immune system tuned up and doing its part and I believe it is helping the Zytiga to work better.
   When I was diagnosed the only treatments available to me were first line hormone therapy and chemotherapy. I was diagnosed in an age where there have been great advances in the war on prostate cancer. Three days ago I had my blood drawn for a PSA test. I am fortunate that my results usually come back the same day as my draw. They post the results online so my post draw wait time is a matter of hours, not days. It is a good thing because after my blood draw my mind begins to play games with me. The question I always ask myself is " if my levels are up, then what comes next?". I asked this question to a group of friends and was in awe of the many drugs for PCa that are both available or in trial. Many of the trial drugs have been fast tracked. It appears I have an endless sea of option available to me if Zytiga fails.
   We live in an age of promise and hope. We live in an age that could quite possibly see the end of cancer. We also live in an age where the connection to our friends and family is on a 3 inch screen. It is a strange and amazing world in which we live. I am happy I know who is in control. Todd

Tuesday, February 10, 2015

West coast winter blues

    First of all, I would like to point out that I am not a global warming nut.  After saying that, I would like to add, that things are changing. People on the East Coast would probably be thrilled with the winter that we've had in Southwest Washington. It has been unusually mild. The mountain snowpack is the worst I have ever seen it. There is literally grass growing underneath the skilifts. Our snowmobiles have sat idle in the garage for over year now. Our snowboards hang on the wall. Mandy and I have gone snowshoeing twice this year. Both times were in November and truthfully we didn't need snowshoes as the snow was only about 6 inches deep. State hydrologists are forecasting low river levels this summer. They are not saying yet that we are in drought like conditions as we are getting plenty of precipitation it is simply falling as rain. During the hot summer months there will be no snowpack to keep the rivers flowing. Each night when I let the dog out to do his business the woods and wetlands surrounding our home are filled with the chorus of a myriad of frogs. Frogs in February. It doesn't seem possible. The Canadian geese have returned. There are nesting pairs everywhere around the lake. We have quite literally had only one week this winter of temperatures below freezing. Our home is near a lake and is surrounded by wetlands. The unusually warm winter means a really bad year for mosquitoes, fleas, hornets, and wasps. We had another winter like this back in the mid-80s. It's a cycle. Next year we will probably have record snowfall. Until then I guess we will just have to be content with warm weather outdoor sports.
I read an article yesterday saying that government is toying with the idea of cooling the planet by spraying sulphur pollution into the upper atmosphere. When will people realize that we are not in control. We tend to screw up everything we touch. I think we can all learn from the theme song of the Disney movie "Frozen" "Let it Go"

Monday, February 9, 2015

The games people play

Three years ago this May I recieved Provenge after fighting for it for six months. Why did I have to fight for it in the first place? I had to fight for it due to an article in the JNCI stating it was compared to a flawed placebo and wouldn't work. I often wonder how many men didn't get it because they wouldn't fight for it like I did. Three years later it seems nothing has changed. There are still people out there that want to see Provenge go away. Dendreon is being sold off to the highest bidder and people are happy about this. Wtf. I can only see one reason for this. It has to be that there are people out there who are going to make a ton of money. How sad. How much money is enough. What kind of people would dare profit by taking away hope from those who have none. I have written about this before but a recent comment about my last blog post( not on my blog) has peaked my ire. It seems today that the market is the almighty. I am so sick of it. . This post will be short but sweet. I needed to rant a little bit. 

Saturday, February 7, 2015

Resiliency A.K.A Overcoming Adversity

    Flight 3493 Santa Barbara to Portland. 38,0000 ft. over San Francisco. I am missing my friends. This disease took a lot from me but it has given back more than it ever took away. It's greatest gift is the friendships we have made along the way. Every place we have traveled we have made friendships that will last a life time.

    It has been a long time since I have written. I'm afraid I haven't been inspired.  It takes time to write and lately time has been a precious commodity. Work takes up a great deal of my time and with an unresolved labor dispute hanging over our heads I am afraid my mind has been distracted.
   Dendreon invited me back to share my story with them last week. They flew Mandy and I down to Santa Barbara for a few days and once again treated us like we were rock stars. It is common knowledge that the company is in transition. The company I work for was recently acquired so I know what they are going through. They said they were just happy that no matter what happens, Provenge would still be available.
   Mandy and I arrived late Tuesday evening in Santa Barbara. We said hi to a couple of people got some food sent to our room and went to bed. I had been up since 4 am so I don't remember my head hitting the pillow. I awoke at 6:00 a.m. dressed, and made my way to the ballroom where the meetings were being held. We did a short rehearsal before sneaking out the back door. Us being there was suppose to be a surprise. They didn't want anybody to see me who might recognize me.

    Last June, the Dendreon folks came to our home to film another video as a follow up to the ones they shot 2 years previous. At the end of that video I sang a Tom Petty song using the guitar they bought me and autographed while we were in Florida. They spliced together bits  and pieces of both videos to create a video specifically tailored to the meeting at hand. While the video was playing I waited behind a curtain. The last minute or so of the video included me playing the Petty song. Half way through the song they shut it off simulating a glitch. A few seconds after the video interruption I emerged from behind the curtain, guitar in hand, to finish the song. It was all really cool. After the song, I shared my story with a couple hundred people. I closed by singing " Live Like You Were Dying" by Tim McGraw. I left to a standing ovation.
Yep, we were treated like rock stars...... Awesome........

Afterward and for the next couple days Mandy and I were free to explore the resort and the coastline. We would on occasion have the opportunity to speak with some of the Dendreon staff and once again I was so impressed by why they do what they do. Each has a reason but collectively the just want to make a difference. They have! They do!

    Over and over I was told how inspiring my story is. Again and again we were thanked for coming. I pray for resiliencey for the people of Dendreon. They are good people. They deserve better than what has happened. Provenge will continue to be made though and that is all they care about.
   As I shared my story last week I began to realize that although cancer is a big part of my story it is not the focus. I once thought that the only people who might want to hear it were guys like me who have prostate cancer. The truth is that my story is about overcoming adversity and maintaining a positive attitude in spite of it. It's not always easy. Each time we face adversity it makes us stronger however and better prepared for the next challenge that lies ahead.
   We all face challenges. They are what shape us. they make us who we are and who we will become. I hope I continue to grow and become better with each challenge I face.