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. 

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. 

    

    

The countdown is over

   22 hours and 27 minutes. My retirement countdown is almost to zero. It seems like yesterday it was at 300 days. I was looking forward to retirement. I announced it to the world. I am now less than 24 hours from the day I was to leave the mill for the last time and I am still no closer to retirement than I was last year. I may in fact be further away than ever.

   Last June our labor agreement expired. After 7 months of negotiations we are not even close to a new contract. As part of the companies proposal they want to eliminate the permanent and total disability benefit from our life insurance. I'm sure they don't realize, nor do they  care, but that life insurance is the only life insurance that I have. It is the only life insurance I can get. If I am forced to quit working due to a disability my family is going to need that money. I'm sure that the company's proposal looks good to the stockholders but I think it stinks.

   My doctor told me a couple weeks ago that he could not, in good conscience, write a letter to the Social Security Administration stating that I am disabled. I'm just not sick enough. My PSA is at undetectable levels. I have no tumor mass that would show up on a CAT scan. There's nothing in my bones that would show up on a bone scan. I have stage four prostate cancer! I have failed three different treatments. I have had multiple doctors tell me that I have terminal prostate cancer, but I am still not sick enough to retire on a disability. 

   If the company that I work for is successful in their endeavors, it will mean that upon my disability retirement I would no longer be able to collect 75% of my $65,000 life policy on my way out the door. My retirement plans were contingent on receiving that money. No money, no retirement. At the rate I am saving it will take me another four years to put that amount into savings. I'm pretty sure I don't have any wealthy relatives who have included me in their will so it appears that at least for the time being, retiring is off the table. 

   I guess the real question here is how do I feel about this?. I'm healthy. How could I possibly be upset about that? Mandy tells me that I'm too young to retire and that I have way too much energy. I guess it's kind of hard to be upset about that as well. At the time of  my diagnosis I truly believed that I would never live to see the age of 50. A month ago I turned 51. I always felt that if I was ever going to retire I would have to retire early or work until I die. The odds of me living to normal retirement age are getting better all the time. 

   In the last three years Mandy and I have traveled more than I ever thought possible. We have been to places we never thought we  would go. We have seen things we never thought we would see. The future is an empty page that is yet to be written. When we began our life together Mandy and I were like two kids just out of high school. Neither of us really had much of anything to our name. In  eight short years we have gone from having very little to having it all. We have beaten the odds in every way. We are truly blessed. 

In three short years many of our monthly expenses will be paid off. We will no longer have to worry about paying the student loan or the mortgage insurance or car payments. In three years my 401(k) will be fatter and our savings accounts will be healthier. In three years we will be better prepared for me to retire. Perhaps I will reset the timer. Call me Mr. 1095

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51

   Two weeks ago I said goodbye to 50. I am sad to see him go. We only knew each other a year but it was a year of fun and friendships. 

   I first met 50 somewhere in the midst of the Caribbean watching the  Seahawks dismantle the Saints with Mandy at my side and 28 new friends who for the most part were rooting for New Orleans. It was a birthday celebration like no other and one I will never forget. At the start of the game we were surrounded by a sea of black and gold and could not get near the television. By half time we had front row seats. Our new friends were gracious losers that night. God bless the Saints fans.

   As the year went on I realized that 50 was going to be a lot of fun. To be honest it was just like 40 but with a discount. I had to laugh when my aarp card arrived in the  mail. 

   I was not sure I would ever meet fifty. There were those who claimed fifty was not in the cards for me but I guess nobody knows what the future hold except for the future. As time drew close I wasn't sure I wanted to meet him but in the end we became good friends. 

  After a year of hanging out with my good friend "50" I had to say goodbye. I know I will never see him again. In his place I have a new guy to hang out with. His name is "51"! He looks just like 50. I find it hard to tell them apart. His arrival brought with him none of the dread nor any of the pomp and circumstance. It was a quiet evening spent with family when he showed up. He is quiet and laid back. He is perhaps a little more patient and hopefully a little wiser. He is taking Mandy and I to Hawaii in a few months. He is putting me to work paying off bills afterward. 51 seems to worry about stuff like savings accounts, retirement, and debt reduction. 51 is looking to be anal. Time will tell. Thanks again for reading. Todd

Give Thanks

 Give thanks with a grateful heart. In the late 80's that was my favorite phrase of one of my favorite worship songs. Life was pretty good back then. We were very involved in a church that we loved. The fact of the matter is we were often at church or a church function 5 days a week. It was cool though because all of our friends were there as well. I was a worship leader and co-leader of the youth group. There was church on Sunday and Wednesday as well as home group on Friday. Worship team rehearsal was on Monday and Youth group was every Thursday evening. We were involved. We had it all. We would sing songs of worship and praise and thanksgiving. Looking back I wonder, was I truly thankful.

   A bitter divorce in 95' changed everything. I would not attend church again for 14 years. To this day I won't attend on a regular basis. I have nothing against church. I have nothing against most who attend. It is said that "time heals all wounds". That may be true but even a wound that recieves the proper care leaves a scar. For many years I blamed myself for the failed marriage. In time the truth became self evident and I was able to forgive myself and my ex.

  My divorce in 95 began my journey through hell. Not only did my family unravel but my life did as well. From another marriage and divorce to a crazy woman to a bout with drug addiction, I spent the next 10 years systematically destroying my life and losing everything along the way. 

  In the summer of 2005 I thought I had finally found the bottom of the hole. It was a long way up but with the help of family and friends who had never lost hope I threw away the shovel and began the long climb "Back to good" as I began to see the light of day I was diagnosed with terminal cancer. It was almost as if God was saying " Are you serious" and kicked me in the nuts. I know that is not the truth but perceptions create reality.

   Tomorrow is Thanksgiving. I know it is cliche to do this but although I will be working a 12 hour shift tomorrow  I want to share with my family and friends the gratefulness I feel in my heart. I am so thankful for the unconditional love of my wonderful wife "Amanda" who has never doubted for a moment the decision she made when she said "I Do". I am thankful for my Children, All four of them, who make me proud even when facing trials of their own. I am thankful for my 6 beautiful granddaughters who are perfect in every way. I am thankful for my friends and family who never gave up on me even in my darkest hours. I am thankful for my mom and dad for always being there even when it was a challenge to do so. I am thankful for the people of Dendreon who continue to do what they do and saving lives under adverse conditions. I am thankful for my doctors who keep finding ways to keep me keeping on. I am ever so grateful for the last 8 and 1/2 years since being told I had a year to live. I am thankful for Cancer. If not for my diagnosis my life would not be the amazing wonderful ride it is today. Last but certainly not least, I am thankful to God, who had the grace and mercy to give me another chance to get it right. I hope I never let all of you down again.

  I know my story is inspirational. I get inspired just reading it and I lived it. I just want all the afore mentioned to know that I couldn't have done it without you. Happy Thanksgiving, todd 

   

Dark days

   In the last few days many of my friends, old and new, have experienced dark days in their lives. I feel for them. I have gone through these times along my journey and I know what they are going through. For some reason most of my dark days have come during late fall and winter. Perhaps it has to do with the shorter days. I only know that most people I have known who have a terminal illness go through them. 

   I have been fortunate that the darkness has been at the fringes these last few years. Omnipresent but easily ignored. Provenge and Zytiga are doing as advertised. Consistent undetectable numbers keep the light burning bright even in the cold grey days of winter. I am blessed. For some of my friends it is a different story. I will use my limited literary skill to try and take you into the darkness.

   For the terminally ill darkness can be one bad day away. Perspective is everything. Prostate cancer, especially advanced disease, presents its own unique circumstances as many of the treatments carry with them, the probability of causing depression. In the beginning of my treatment I faced many dark days. I was a newlywed. I was faced with zero libido and E.D. My bride tried to be understanding but she was hopelessly and passionately in love with me. I was unable to reciprocate the physical desire she felt towards me. In 8 years of marriage we have adjusted to the new normal. As my body has slowly adjusted to the near zero testosterone, I have  regained function and some semblance of physical desire. It has been a long road. It has not always been easy. Our love for one another has carried us through. We have matured as people and as a couple. The light of our love has burned bright to light a path through the darkness lurking beyond. The rest of this entry will be hypothetical in nature but will be based on actual events in years previous.

   It is 2a.m. I close my eyes but sleep will not come. If I sleep will I awake in the morning? Mandy is crying in her sleep. My mind is racing with questions. There are no answers. Dr. Liemert retired. After 18 months my PSA is rising. We met the new doctor today. He is taking me off Casodex hoping my PSA will drop. He said he has never seen it happen. He said I have 30 months of life left. He said it in front of Mandy. I think he is a sadistic S.O.B. We are suppose to sign papers on our home next week. What's the point? Will it hurt to Die? Is there really a heaven? I feel so ripped off! I had plans. I am suppose to be putting my life back together. My doctor is an ass hole. Doesn't he realize what he did? He took away our hope. It felt good to tell him he was fired. What a prick! Should we buy the home? How will Mandy survive the house payment without me? I should retire! Will it hurt? There are drugs for that. Good drugs. They didn't help Paul. He was in terrible pain at the end. They took him off Casodex. It didn't work. Maybe the doctor is right. I should get drunk. Why would you get drunk idiot? It's 2am. Why did I allow myself to marry Mandy? I am going to die and she will be hurt. I am an idiot. She deserves better! I am scared. I should wake her up! No!!! She is sleeping peacefully now. 

   This was one night. The darkness can go on and on. Sleepless nights, question upon question without answers, torment. You become your own worst enemy drowning in a pit of despair.  Nights turn  to days, days into weeks, weeks drag on. Without hope darkness prevails. Motivation wanes, and dreams are forgotten. In the war on cancer hope is a mighty weapon in our arsenal. It is a game changer. It is not however the mightiest.

     In my personal war, the love of my bride has always been the trump card. She would not allow me to fall into the pit. She motivated me to stay active. She dared to dream of the future. She made me laugh long and hard. She helped me to keep my sanity. She helped me to have faith during the times of uncertainty. Faith hope and love are powerfull weapons but to quote Corinthians, " The Greatest of these is Love" Todd

  

   

The Last Day

  Fog has set in. There is no rain but here in the forest the fir trees shed water with each passing breeze. Moss hangs thick from the towering trees. It soaks up the fog like a sponge. The earth is still around me. I am cold and wet but I have never felt more alive.

   It is the last day of elk season. The camper is on the truck and all of my gear is loaded. I am waiting for my friends to return from a mid-morning hunt to begin tearing down the tent. As I walk through the heavy timber behind camp I wonder why I haven't hunted here. The forest floor is covered with elk scat and tracks. Beneath  my feet is a thick carpet of moss. I am silent as walk along the forest trails.

   This is my first time hunting the hills and mountains above the Columbia River. I refuse to pay Weyerhaeuser company to hunt in my usual area. My dad was so discouraged  that he stopped hunting all together. This year I hunted with new friends who were strangers nine days ago. I am in unfamiliar territory but it has been an amazing week.

  

   On Friday, October 31, I left the mill parking lot in our camper for 9 days of elk hunting. During the last 10 years Mandy and I have been apart for no more than 2 days. As excited as I was to go hunting, I was just as sad to be leaving her behind. With our little Pekingese "Brody" riding shotgun, we left the parking lot to fuel up and buy groceries before heading for the hills. Mandy and our daughter met us at the gate with a platter of fresh baked chocolate chip cookies and one last hug and kiss goodbye. It was dark thirty before I arrived at camp and completed setting up. I shared a meal with the guys and headed for bed.

  On my first hunt of the week I headed into the forest on a north, northwest heading. Three hours later I came out on a road and had no idea where I was at. My gps said it was 5 miles to camp but a sheer rock cliff was between camp and myself. It was a 15 mile walk by road. Fortunately a couple of high school kids who were out shooting pictures and who were lost and low on fuel gave me a ride in exchange for navigation.

   It was a great week. We chased elk everyday but couldn't quite put one on the ground. We laughed, told stories, drank beer, and played pinochle in the evenings, before hitting our racks around 9 p.m. My alarm would go off at 5:30 in the morning and we would chase elk all day long. On Sunday November 2nd my dad and uncle made a surprise visit and actually were excited about the prospect of hunting a new area next year. On Wednesday my dad made a return visit with my mom. They brought pizza doughnuts and oranges.  Mandy was coming to elk camp for a night on Friday. She is my good luck charm. On Friday afternoon I got my bull. He wasn't one for the record books for sure but he was the only bull any of us got a shot at all season.  I can't help but feel that just knowing Mandy was coming out was the reason I got my elk. We skinned and boned it and hung the quarters from a vine maple I cut down and lashed to a couple of fir trees. We packed out the back straps, tenderloin, and rib meat, leaving the rest until morning. 

    I raced back to camp for a quick shower and change of clothes and headed to town to have a dinner date with Mandy before bringing her back to camp. After a few introductions we retired to the camper for a glass of wine and a movie. I really missed her. We both slept like babies that night.

   We packed The rest of the elk out early Saturday morning. It was only a half mile pack. When the elk was hanging in the cooler I returned to camp to take Mandy for a hike on the Bradley trail. Long before logging roads and modern forestry practices the trail was the only access to the area. While on the trail we had a rare sighting of a cougar. After reaching trails end we returned and noticed a fresh cat track in the middle of my boot print. The cat had been stalking us. I returned to town with Mandy Saturday evening to perform at a fund raiser for a 6 year old little girl with leukemia. After the show Mandy and Brody returned home and I headed back to camp.

   The one hiccup of the trip came Monday morning. We returned to camp and noticed that both passenger side tires on my truck were going flat. I aired them up and made a quick trip to Les Schwab for new set of Toyo Open Country 10 ply A/T's. I couldn't help but go 2 inches taller.  

   Elk season is over. We will have meat in the freezer. That is always a bonus. As I sit beneath the trees listening to the sound of the forest around me I am thankful. I am so happy to be alive and in this place. I am grateful for my life and my family. Tomorrow I will be back at work. Life will resume as it always does. Winter is coming. The air is cool and crisp. Soon the holidays will be upon us. There will be elk sausage. 101 months since diagnosis and I have just spent a week chasing elk up and down mountains. I had a blast man. It was cool. Never give up my friends. Never give in. When my life is over I want to come sliding through the gates of heaven grinning ear to ear and proclaiming, "Wow....That was a hell of a ride" Todd