Saturday, September 28, 2013

Good morning

Lately my writing feels stagnant. I don't know why except for we have been couch potatoes for a few weeks. Everything we do feels forced Mandy wishes we could be bears. It would be so awesome to hibernate.  I am in my recliner beside the fire drinking coffee as my family sleeps. The fire feels good.  There is a storm coming. The wind is blowing  at a pretty good clip. The weather service predicts 5"-10" of rain. I am glad we live on a hill. That is a lot of rain.
There is not much happening on the cancer front. Zytiga is still making me sick. It is tolerable however and most mornings I keep my breakfast on the inside. It is weird what we tolerate to survive.  I never thought daily nausea would be the norm in my life but then again I never thought I would be okay with being an Enoch. 

Yesterday we took a leap of faith. Going into debt is always a hard thing for us to do. If I die what will happen to Mandy. Her attitude is that life does not come with a guarantee so we are going to have a good time while we are here. My thoughts are a little different. I kind of feel like the more toys in the toy box equate to more lures in the tackle box to catch herself a new husband when I get sick of fighting this crap. ........Okay that's morbid and y'all might not see the humor in it as I do. Anyway, yesterday we brought this thing home. I have wanted one my entire life. This year we will be camping in the snow and snowmobiling day and night. No reservations required. Oh and we can also tow the boat behind this baby. We traded our travel trailer in on it. We took a beating on the trade but the trailer was starting to fall apart. I would never again buy an R.V. made by heartland. They are not a company that stands behind the quality of their craftsmanship.

    It is time to log off. I need to go put air bags on the Dodge.  The camper is heavy.... Y.O.L.O.

The view of others.

At times we need to look at ourselves through the eyes of our peers. As we walk through our daily lives we most likely will not see the subtle daily changes but today I found out that others do. Today while I was walking through the mechanical department exchanging insults with my co-workers and generally being a complete smart @$$ one of the supervisors made the comment " you really do feel good don't you? " I paused and thought for a moment before saying. "Yes I do, I really do feel good Kevin"
His reply caught me a little off guard. He said " you look good, You look better than I have seen you look in a long time.  A year and a half ago I didn't think you were long for this life."
I didn't see the difference in my appearance. I didn't think that I looked sick. I really do feel good. Except for the hour of morning sickness after taking the Zytiga. I wish I didn't have to take this stuff. My testosterone level is fractional. I have lost 12 pounds. I think I am losing muscle mass and the hot flashes are the worst but I don't feel sick. People talk to me again. It's funny how they didn't talk much when I looked sick. Maybe they didn't know what to say. Maybe I didn't have much to say. Cancer, for quite some time, was all I had to talk about. Mandy told me I have had a gleam in my eye again since my first infusion of Provenge. Whether it is the medication or the hope that it gave matters not. The bottom line is I am alive, I feel good, and others around me can see it. How is it that money and outside interest can play such a huge role in the treatment of cancer? It appalls me that wall street impacts cancer treatment in the name of the almighty dollar. My humble opinion, "there is a special place in hell for those seeking to profit at the expense of those who suffer from cancer." Asta lavista baby

Sunday, September 22, 2013

My favorite things about fall

Windy days and falling leaves provide the most entertaining form of spousal competition Mandy and I could dream up. " Leaf Catching "For some reason Mandy derives great satisfaction competing with me but only if she wins. Everything is competition. Foosball, dart, kayaking, biking, etc. they are all forms of competition. Five years ago we invented leaf catching. Oh it is a game that has been played by countless others, of this I am certain. Mandy however, takes it to a new level. We chase  after falling leaves shoving them in our pockets until we are both out of breathe and exhausted from running and laughter. Last year she turned it into a contact sport. She has yet to beat me. Have I ever mentioned that she keeps me young.

As the mountain air turns colder the Roosevelt elk begin to rut. The high pitched bugle's make the hair stand up on the back of your neck. Thirty miles up the highway from me is the home of the Mt. St. Helens elk herd. I know of nowhere else where a person can find a greater population of mature branched antler bull elk. Hiking in this area is so awesome during the rut.

Hunting season, fishing season, watching the Seahawks on Sunday morning. Digging clams at the coast. A cold morning a warm fire and a hot cup of coffee.

I love this time of year so much. I love the beauty of the hillsides. I love being at the coast as the huge storm driven waves crash over the rocks. It's true that after a while the grey sky wears on me but fall is such as awesome time of year.

Amanda and I just closed the deal on a.camper for our Dodge truck. We will miss our roomy trailer that has given us 4 amazing summers but it is just not practical anymore. We are now looking forward to going up to the south side of Mt. St. Helens and camping with the snow mobiles.  I have a picture in my.mind of 3-6' of snow and the three of us chillax in the camper with a crock pot full of home made chilli. I have been waiting five days since approval and still I don't have buyers regret. I think this one just feels right.

Amanda applied for her passport today. The Caribbean is a mere 2 months away.

I have not heard much from my Dendreon family lately. I hope they have me visit again. I was so touched by the people I met and their dedication to the patient.  It's funny but I miss them. They have blessed me so much though in the last year that I can't imagine any more awesome stuff will be coming my way. I wish I could do more. I wish I could tell every man fighting this disease how amazing of a medication Provenge is.

I want every man fighting this disease to feel as good as I do. Maybe one day the truth will no longer be shadowed by the overpowering volume of lies.
How.many men will die before then.

I dont know how I got on my soap box about the merits of provenge but it is time to

Enjoy the beauty of the season.

Tuesday, September 17, 2013


Lately I don't sleep. My mind doesn't allow it. When my bladder wakes me returning to sleep is unlikely. When I do sleep it is restless. The Zytiga is causing extreme hot flashes and night sweats. I think about getting sleeping pills but I take too many pills.
    Mandy and I have a travel trailer.  We bought it new three and a half years ago.  We financed it and in all this time we have never been late. The problem with having the trailer is that we also have a boat. We can't tow both at the same time. Last weekend we went to the r.v. show and found the answer to our problems. We found a really nice cab-over camper that would pair nicely with our Dodge truck. Our credit was approved as long as our trailer has a good trade in value. We can most likely pick it up next weekend. At 1:47a.m. last night reality hit me like a truck. I may not live long enough to pay it off. All I could think about for the next two hours was how can I get out of debt. How can I provide Mandy with any kind of security if my death bankrupts her. I promised her thirty years but it has only been 87 months and I am already on Zytiga. What if it fails quickly? How many more drugs are there? The truth is that I may have made a promise that I cannot keep. I need to get out of debt but that is impossible. We make decent money but we bought so many things. I am not a fan of reality. So each night I struggle to fall asleep and hope that the alarm will wake me. It never does. I am haunted by an overwhelming sense of dread. I am not worried for my life. Although I would love to live a long life I am not afraid of it ending. My fear is for those I leave behind.
    I still have high hopes that my Provenge therapy 16 months ago will keep this crap in check for many years to come.
   I need a plan. I really need a plan. Even if I live another couple decades how much longer will I be able to punish my body doing the type of work that I do.

I think trading our trailer in on a camper is out of the question!!

I am so bummed out. Todd

Tuesday, September 10, 2013

The battle

    At the time of my diagnosis I was given a year. I fired that Doctor. Eighteen months later I was given 30 months. I fired that doctor as well. I was told by another doctor a few years later that I could not have Provenge. I fired that doctor as well. I knew in my heart that receiving Provenge was the key to any successful treatment plan. It had to be the first step. It only made sense to me. What could be more natural than turning your immune system on high to seek out and destroy cancer wherever it is in your body. It worked. It stopped the disease for 14 months and when disease progression started up again it was way slower than it was before. You see Provenge is still working and every drug that follows Provenge therapy is going to have the added benefit of a supercharged immune system to help it as well. Provenge is still working.
    We live in a day and age where for many men Prostate Cancer is a chronic disease. There is no cure as of yet for advanced disease but it can be treated indefinitely. We have medications to fight the disease but the biggest battle that takes place in this war takes place in the mind. I have said it a hundred times in the last 87 ( yes it has been that long since I was given a year to live ) months. People do one of two things when they hear the word cancer. They either put on the gloves or they pick up a shovel and start digging a hole. I hate to dig. I am a fighter. There are times when I cannot sleep. There are times that the reality that I have a terminal disease will not let go of my thoughts. Those are the times when I need more than statistics. Those are the times when my faith is tested. Those are the times I stand on psalms 103 verse 1-5. Bless the lord oh my soul, he who forgives my sins and heals me of all my diseases..
   I read an article today about Dendreon being in financial straits. I heard talks of debt, and bankruptcy, and bad business model. I don't know about all of that stuff. All I know is the stuff works and the leadership team of Dendreon needs to figure this out. Thousands of men are depending on you. I was told I had a year. I will not give up and it has been 87 months. I don't care what the street says about Dendreon. I don't care what a certain stock anylyst has to say about Dendreon. We all know it works.

Monday, September 9, 2013

An Amazing year so far

Last year on December 15th the good folks at Dendreon came to our home to produce a patient story video. It was an amazing experience for my family and I. They came with a small army of people and spent an entire day with us. The filmed, interviewed, and took hundreds of still shots.

It was so much fun and I have to admit, they made me feel like a rock star. If that would have been the end, it would have been a very neat experience but that day in December was just the beginning. A month later they flew Mandy and I to St. Petersburg, Florida where I was the guest speaker at their annual pep rally.
I sat on that stage with pictures of Mandy and I and our daughter  displayed behind me and told my story to strangers. I told them how grateful I was to have received Provenge. I told them how grateful I was to be alive. We made a lot of new friends that day. I am still in contact with many of them. Some of them I view as an extended part of our family. They know who they are.
At the end of the event I was presented with a guitar signed by all of the Dendreon employees who were in attendance. It is impossible for me to convey the depth of emotions I felt standing on that stage. I can only say that gratitude was at the top of the list. We were so sad to leave Florida and say goodbye to all of our new friends. 

After Florida I was able to visit the Dendreon facilities in Seal Beach California and Union City Georgia. I met all of these wonderful people who work every day with the sole purpose of putting the patient first. I was able to tour the facilities and see the entire amazing process of turning white blood cells into cancer fighting machines. I was truly blown away.

I am from a small town. I have rarely been outside of my county let alone travel across the country but in the last year, I have been to our nations Capital, LasVegas Nevada, Seal Beach California, St. Petersburg Florida, Atlanta Georgia, and in a couple more months we get to go on a Caribbean cruise. I have got to do all of this because of Prostate Cancer. I am soooo not worthy of all the blessings that have been bestowed upon me. I am so thankful for all the people who made this all possible. I hope I can do more to repay the kindness that has been shown to us.
   It has been an amazing year. It really has been. Somehow in the middle of all this we were able to go on vacation to northern Idaho and spend a ton of time camping and water skiing over the summer. We even took a four day long weekend to snowmobile in Bend Oregon and snow ski on Mt Hood.
 I don't know what I will do when life slows down to the pace it was before my rock star status. I honestly hope it doesn't happen for a while. I hope you have enjoyed the pictures.
I hope if you guys that have Prostate cancer become refractory that you will opt to have Provenge first. I urge all of you to insist on it. I had 14 side effect free months. These were months where I lived my life out loud and choked as much as I could out of every day before I needed to switch gears and try something else. I intend on being around for many years to come and Provenge is a huge reason why that is going to happen. Todd