Wednesday, December 31, 2014

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
.

Thursday, December 4, 2014

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



Wednesday, November 26, 2014

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 
   

Thursday, November 13, 2014

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
  
   

Tuesday, November 11, 2014

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
   

Thursday, October 23, 2014

Two more months

   My P.S.A. Test came back yesterday as undetectable. This is the 4th in a row now and it feels really good. I called Mandy right away to give her the good news. Today the game begins anew. I will see my oncologist this afternoon, get a bone infusion and a refill for Zytiga and not think about cancer until my psa is tested again in two months. 
   I talked to a good friend on the phone last night. He will be getting Provenge therapy before years end. I am really happy for him. He is a good man and deserves the very best. I hope to one day recieve a booster dose of it myself. Time will tell if that will happen. Dendreon stock is in the toilet and I worry about the companies survival. I believe Provenge will always be around but I can't help feeling that Dendreon may have been hurt beyond repair by the smear campaign that M.H. launched against it. That campaign almost kept me from getting the drug 2-1/2 years ago. Sometimes life isn't fair.
   I still hear doctors say that Provenge is too expensive and that the benefit does not justify the price tag. What a load of crap. Provenge gave me 14 side effect free progression free months. If my math is correct that equates to roughly $10000 a month. The number may have been lower as prior to starting zytiga I had no sign of progression other than my psa was rising and I couldn't emotionally handle seeing it rise month after month. I may have started Zytiga a little earlier than needed. Even if I did not start early, the cost factor is not that different between the two medications. 
   I agree that the sticker shock of Provenge is just a little hard to swallow all at once but Provenge treatment is over in 5 weeks. What about Zytiga?
   My Zytiga prescription is roughly $5600 a month. I have to have monthly Dr. appointments, monthly blood tests,and a  separate prednisone prescription. Not only that but the side effects of Zytiga are much worse than anything I ever experienced on Provenge. Albeit I didn't experience any side effects with Provenge. It doesn't take long if you do tha math to realize that the cost is very comparable between the two medications. An added benefit with Provenge is that receiving it first can actually help subsequent medications to be more effective. Zytiga cannot make that claim. I digress!
   Yesterday I was given two more months to be Cancer Free. It was a wonderful gift. This weekend I will celebrate with the beautiful love of my life. I have now lived 101 months since my diagnosis of widespread metastatic Prostate Cancer. Next weekend I will be on vacation for a week of elk hunting. I can only imagine what life would be like if these new medications had not been brought to market. Can guys even walk up and down mountains while undergoing chemotherapy. 
   Each passing year brings me closer to keeping my 30 year promise to Mandy. Each year new medications are being tested and approved for Prostate Cancer treatment. The future is bright and getting brighter every day. It makes me wish I had promised Mandy 40 years. I have an amazing wonderful life and I am going be here for a long long time. Yolo. Todd

Friday, October 17, 2014

you have cancer. Now what?

    I am not a doctor. I have nothing to do within the realm of the medical community. I am just a guy who loves to write who also has the luck of a prostate cancer diagnosis. If you find this blog by chance or if your a regular reader, Welcome.  I am sorry I haven't written much lately. I haven't had much to talk about. I recent doctor visit has inspired me.
   There are lots of places a person can find information about treatment options on the web. I talk about several of the ones that I have experienced in previous blog entries. The following will have nothing to do with treatments but I do hope to instill a mindset or perhaps a heart set regarding the road ahead that we must travel.
  A diagnosis of cancer can be devastating especially with prostate cancer because most often men had no idea there was a problem. In my case it was a little different. I knew I was sick I just had no idea how sick I was.    The question however is this. You have cancer .... Now what.?
   Your scared no doubt. I have seen all the cancer movies. The hero dies. Those sure are a ton of fun to watch. My wife and daughter recently goaded me into watching " The Fault In Our Stars" I need to tell you that I don't understand what the heck is wrong with women. Why do they enjoy watching stuff like that. Oh sure, I get the love story but the dude died!! HE DIED!!! They both had tears running down their cheeks and I must admit that I was struggling to hold back the tears but more was on the line here than meets the eye. They threatened to take away my man card the last time I cried at a movie. I admit that I deserved it. It was the Hanna Montana movie. Still. come hell or high water I was not about to cry at this one.
   I digress. Your scared. I get it. I was too. Looking back, I am certain I fell apart a little. That's okay. You can do it too but what is more important is what you do afterward. After the tears and/or the rage as was in my case. ( I sort of told God I thought he was an asshole ) what do you do next.
    Some people have it all together. Some don't. Prior to my diagnosis I thought I wanted to die. I guess you might call this stinking thinking. There is a lot of it out there and it is also the point I am really trying to make.
   We are all born with a death sentence. The joke says don't take life too serious because nobody gets out alive. I have seen so many people who just stop living life when they are told they might die. That is like throwing the last bowl of ice cream in the trash because there isn't any left. It's stupid and it is the worst kind of stinking thinking there is. You are sick! Your not dead!
   Cancer is no fun but life is amazingly good if you allow it to be and it doesn't matter if you have a week or 30 more years. I want to open up a new mindset that uses cancer as a turning point in your life. What have you always wanted to do. What have you always wanted to see. If you spend your time living life out loud you may find that your having so much fun that at times you forget all about the cancer. You may even forget to die. Sometimes when I think about it, it all makes sense. Well, not really sense but it makes me ask questions that are far too complicated for me to answer. I wonder, Did I get sick because I wanted to die? Did the thought of dying give me incentive to live? Has actually living life rather than being an idle participant made the difference in the overall success of my treatment? I don't have the answers and when I think about it I only have more questions but maybe it doesn't matter. We all have an expiration date. If we were born with the understanding that we only have 10, 15, or 50, years and when the day comes that we have to leave would we waste that time or would we experience life for all it has to offer. We are born with this false sense of immortality. Oh sure, we all know that one day we will die but it won't happen for a long long time. We go through life wasting day after day simply existing when we should be living and loving and going for it any time we want to. You have Cancer. You have an expiration date that may come sooner than later but the truth is that you don't know that. So what has changed? The answer is NOTHING!! Nothing has changed. You will have good days and some that may not be as good but you are alive today and God willing tomorrow as well. Use today as a turning point. From this day forward, have no regrets. It is a beautiful life. Go out and GETCHASOME. Todd

Friday, September 26, 2014

The end of an era.

   Elk season is a month away. Four weeks to be precise. It is a time that I usually look foreward to however this year is bittersweet. My first hunt with my dad was in 1975. It was something I had eagerly anticipated the two previous years. I couldn't wait to turn 12 so I could take a hunters safety course and be able to go out hunting with my dad. I got my first buck that year. It wasn't very big but neither was I.
That year was the start of a tradition I hoped would last forever. When the volcano erupted 5 years later most of the area that we hunted was closed due to its close proximity to the mountain. It would be another ten years before dad and I hunted together again. For the last 20 years beginning in mid October until mid November dad and I have spent all of our free time in the woods together. It is our time.
   My dad turned 72 this year. He is diabetic and needs a double knee replacement. It has become difficult for him to get out of the truck. The last two years my success has been compromised by the fact that I am basically hunting alone. It hasn't bothered me though. Getting an elk or a buck was always seen as a bonus. The true reward has always been time with dad. This year will be my first year of hunting without him. Weyerhaeuser decided to charge $150.00 per person to access their lands this year. For dad, it was the last straw. He didn't even buy a license and tag. It is the end of an era.
   For 50 years my family has hunted the same valley. My grandfather used to ride the rails on a hand car long before logging roads were built to hunt the mountains and canyons we affectionately refer to as the hole. Our camp never moved more than a half mile from its original location. Ten years ago, citing illegal dumping and vandalism, Weyco put a stop to camping on the tree farm. Elk camp was over. We could have camped elsewhere but we knew the area. We knew the trails. Baird mountain was our home. Hunting somewhere else was out of the question so each morning we would rise before the butt-crack of dawn and drive 20 miles of logging roads to hunt the only place we had ever known. When we lost our elk camp we lost much of the fun that went along with it. There were no more campfires and card games and countless hours telling stories. There were no more pancake breakfasts or drunken celebrations of success if we got an elk. We hunted because it was what we always did but it was never the same. 
  This year I will once again camp. It will be in an area unfamiliar to me with a group of guys I have never hunted with. My son will not be home from the eastcoast in time to hunt. My daughter is moving to Pensacola so she will not be hunting either. I refuse to pay Weyerhaeuser Corp. a single dime to enter the tree farm. The company recieves huge tax breaks because they have always allowed the public access to the forests of Washington State. Now they appear to be getting their cake and eating it too. A way of life is once again changing due to the greed of a large cooperation. How sad!!
   This year as I walk through the forests my dad will be in my thoughts. Todd

Sunday, September 21, 2014

A perfect end to summer.

   On this, the last weekend of summer, Amanda, Michaela, and I took advantage of a 90 degree day to burn the last of the fuel out of the boat before putting it away for the winter. As the sun was beginning its long decent to the western horizon we left the willow grove marina on the Columbia River and headed down stream towards the Pacific Ocean. 
   It was a beautiful cloudless evening and the river was as flat and smooth as I have ever seen it. Twenty miles down river we reached our destination. Ninety feet above the river stands "The Villa at Little Cape Horn" an upscale bed and breakfast and the site of our wedding seven years ago. Amanda and I posed for pictures with the Villa behind us before cruising the river bank and the slack water behind the various islands.

   The sun was low in the sky by the time we made it back to the marina. It was a spectacular sunset.

    Summer is over. The forecast calls for a week of rain beginning on Tuesday. Once again the season is changing like someone is flipping a switch. 
   I feel tired and worn down. Something isn't right but I cannot place my finger on it. I have simply had more days in the last week that I have felt sick than days I have felt good. I hope it passes soon. That's all for tonight. Todd



Tuesday, August 5, 2014

A long hot summer



   Summer began this year in May and by late August was still going strong.   It is not often we have hot summers. Perhaps that is why it is so green here. Summer for the most part was also cancer free. No tests, no appointments, no relay for life, and no blogging. 
    This last weekend as the unofficial end of summer came to a close so did my respite from dealing with my illness. My oncology appointment was scheduled for Tuesday, September 2 but Kaiser called me last Thursday informing me of a cancellation and got me in early. Thursday evening my psa results were in and I am still undetectable. I have now been fighting this battle for 99 months. Had I believed my doctors I would have been in the ground 87 months ago.
   Usually we spend Labor Day weekend at the lake. We had in fact made reservations to do just that but at the last minute we opted to head to the beach. It was suppose to rain so water skiing didn't sound appealing anyway. Instead we went salmon fishing and played on the beach.
   


   

   The sun was just beginning to rise as our boat left the marina in Illwaco Wa. The morning air was warm and still. It was apparent early on that I was overdressed. The rain storm that had been forecast the previous week had never developed and the sky was only slightly overcast. It was time to shed my jacket and my sweatshirt would be soon to follow.


We headed west out of Illwaco across the Columbia River Bar. Today was a calm day but the bar was still rough. I don't remember ever crossing the bar when it has been smooth. Once out into the open ocean we headed north searching for signs of plentiful baitfish. We did not have to travel far before we found sea birds by the thousands all feeding off the schools of herring and anchovy a few feet below the surface. In five hours all eleven of us had caught our limit and were standing on the dock back in Illwaco






The rest of the weekend was spent hanging out as a family. 


School has started and yet the summer like weather continues. I am ready for the rain. People often ask how we can live somewhere that has so many rainy days. I don't have an answer except to say that when it doesn't rain much I miss it. 
   Last weekend Mandy and I stayed home and did slightly belated spring cleaning and put up 16 jars of wild blackberry jam. Sunday morning we cut firewood and went to a matinee.

Life is really good. I promise I will write more soon. Todd





Friday, July 25, 2014

Everybody loves a success story

   My post today reflects my state of mind. Last year I was a rock star. It was fun. I have videos on the Provenge website. If you google my name there is material all over the web both by me and about me. Dendreon took me to meet all the folks who make and market the drug. My picture is on their promotional flyers. I admit it was fun and exciting and God knows I am happy to be doing so well in my fight against this disease. It feels good that my story can be a source of hope and inspiration for others but what about the others. 
   I have friends that are dying. I have friends that are in a life and death struggle with this disease and they are not doing as well as I am. What about them. What about the guys who have run the gauntlet of treatments and have come to the place where palative care is all they have left. What about them. What about their wives and children and grandchildren who are forced to watch this disease take it's ugly toll on the men they love. They are forced to watch these men waste in pain before their eyes. I am one of the lucky ones. I have been blessed but for what reason I don't know. It is true that new drugs are coming out every year that can give quality to life and extend it for months and maybe even years but that is not good enough. I am sick and tired of losing friends. I am sick and tired of watching the clinical trials to see if another new drug is coming down the pipe. I am nobody. I don't deserve the attention I have been given. 
    I believe I will see a cure for this disease in my lifetime. I really do believe it. It cannot come soon enough. That's all I have to say today. I am worn down and my mindset is not real good at the moment. I will be better tomorrow but for now I am sad. Todd

Tuesday, July 22, 2014

Life returns

   In the spring of 1980 I was 16, a new driver, and had my first car. It was a 1962 Chevy Impala. The previous year our community and perhaps the world was ubuzz with the story of Mt. St. Helens. The mountain had come to life and the north face was growing at a rate of 5' per day. Geologists predicted an imminate eruption but could not forecast when or how large it might be. My family lived in the town of Castle Rock Wa. a mere 20 miles due west of the mountain. It was a warm spring that year and we had already spent the two previous weekends waterskiing on Mayfield Lake, a reservoir on the Cowlitz river. The weekend  of the eruption was no exception. In Washington you play when the sun is out or you don't play. 
   I awoke at 7a.m. the morning of Sunday, May 18th, and offered to drive a friend to his grandmothers house on the opposite side of the lake. A few minutes after 8a.m.,as we were crossing a bridge I glanced to my left at the exact moment the mountain let go. 
   It has been said that the mountain blew apart with the force of a multi megaton nuclear bomb. Within seconds the sky was filled with a dark cloud of ash, steam, and super heated gasses. Lightning erupted out of the cloud in all directions. The north face of the mountain blew out at super sonic speed instantly  leveling thousands of acres of old growth forest. The mountain was still covered with heavy winter snows in mid may. The eruption melted all of that snow at once. A wall of mud and debris hundreds of feet high raced down the pristine Toutle River valley destroying and burying everything in it's path. The eruption of Mt. St. Helens forever changed the landscape and the lives of everyone around her. That day is forever seared in my memory. The town of Castle Rock was covered in a foot of ash. The Cowlitz river valley flooded with mud and debris. The water was so hot that Chinook Salmon were jumping on to the riverbank to get away. Houses, bridges, logging equipment, and millions upon million of board feet of old growth Douglas fir, came down the river in a churning mire of melted glacier and volcanic mud. The shipping lanes of the Columbia river filled with silt and to this day dredges work constantly to keep commerce moving. Fifty two lives were lost that day including Harry Truman, the cantankerous old codger who refused to leave the mountain. Hundreds of homes were destroyed. A way of life all but ended. The east side of Castle Rock, including the fairgrounds, the race track, and my high school football field were burried under 10 feet of mud. The mud flow came within 20 feet of my High School. We were forced to evacuate until the flood danger passed so for a week we shared a home with 5 other families on a hill top out of town not knowing if we would have a home to come back to. 
   When it was over the Toutle and Cowlitz River valleys looked like a wasteland. Due to the poor soil quality of the dredge spoils along the river banks it was 15 years before vegetation returned. It took months before people could drive the freeways without sending up a cloud of volcanic ash. Dredge spoils line the river bank. Some are over a hundred feet high. Logging companies went bankrupt. Things change. The mud flow damned the outflow of creeks up and down the river valley creating new alpine lakes. The bottom of Spirit Lake is now 200 feet higher than before the eruption.
    Today, life has returned to the mountain. A new forest is springing up from the wasteland the eruption created. Wildlife is abundant. Large rainbow trout fill the alpine lakes.
    The Mt. St. Helens national monument is the Nations newest National Park. There are now over 200 miles of hiking trail in and around the blast zone. Herds of Roosevelt Elk abound in the mountains and on the valley floor. The mountain has the worlds newest glacier. The area was not replanted as is typical with logging operations but rather has been allowed to regenerate naturally. Scientists from around the globe come to the mountain to witness and study the rebirth of this landscape that only 30 years ago was compared to the surface of the moon.
  Sunday last, Mandy, our daughter, and I hiked the Coldwater Lake Trail. Coldwater is one of the new lakes created when the mud flow covered the valley floor. The lake is 5 miles long and is deep and crystal clear. It has  a boat ramp but power boats are strictly forbidden. On any given day kayaker's, and people in canoe's can be seen exploring the lake or fishing for the plentiful native trout. It is a beautiful tranquil place.
   The Coldwater trail begins at the boat ramp on the southwest end of the lake and follows the shoreline the entire length. It never rises more than 300' in elevation and has several areas to access the pristine waters. As you enter the trailhead it is easy to imagine the world at the dawn of creation. To the left the mountains soar up some 2000'. The trail itself is flanked on all sides by wild flowers and tall wheat grass.

In all directions a new forest struggles to survive on a rocky landscape that receives as much as 10' of snow in the winter. Life is everywhere. Beaver, otter, deer, elk, bear and the occasional cougar roam the hillsides. Wild berries are plentiful and very tasty.


Chipmunks and grey squirrels scamper about on logs and in trees. The sound of songbirds is everywhere. Honey bees and bumble bees cover the wild flowers. Every now and then a trout can be heard or seen jumping out of the water. Along the trail you pass small waterfalls and streams. At the far end of the lake you pass under palisades rising thousands of feet from the lake. A recent rock slide from one of these ancient rock formation spreads out over a hundred yards as you near the far end of the lake itself. It was so large that it narrowed the width of the lake by a third. At the end of the lake the terrain flattens and elk can be seen in the tall grass. There is lake access and primitive campsites here and also a sandy beach to lay out on.


At this point the trail begins to climb a few hundred feet and goes through a somewhat older forest that was protected from the volcanic blast by the steep hills that surround it. Once atop of the hill you descend to a wooden bridge that crosses Coldwater Creek.

  
It is at this point that the lake trail ends and the ridge trail begins. The ridge trail is poorly maintained and overgrown. It is a two mile trail that connects the lake trail to the boundary trail and with a 1200' rise in elevation it is not for the faint of heart. Those who throw caution to the wind are rewarded when they reach the top of the ridge with spectacular views of the volcano and the entire valley below. As we hiked up I began to wonder if we would ever reach the top.





After reaching the top it was 3.5 miles down to the east parking lot and a mile and a half to the truck down the highway.. After the hike I was exhausted but felt as young as the dawn of time. It was truly an amazing day shared with two of the people I love most in this world. Hiking through the back country of Mt. St. Helens helps me to believe that there is hope for this world. To see such beauty after complete desolation renews my faith and strengthens my spirit. Surely God is in control. Todd











  

Thursday, July 17, 2014

Rare days

     As I walked out to my truck this morning I was in awe of the beauty surrounding me. Days like today are rare in the Pacific Northwest. The summer sun has warmed the lake and the mist moves across the water like a ghost. There are numerous bass boats among the reads and Lillypads. They glide silently across the water in search of that record largemouth. The valleys below are shrouded in a blanket of fog but up here in the mountains this sky is a brilliant blue. Everything around me is green. A Doe with twin fawns in tow is grazing in the field behind our home. The sound of a freight train echoes from the valley below. A myriad of birds are singing a morning song and in the sky above a bald eagle and osprey  fight over a fish the osprey caught. I loathe the idea of driving to work. My retirement clock said 168 days this morning but with contract negotiations at a stand still working another year or two might be closer to reality. Time will tell.

    The temperature soared into the mid-nineties by early afternoon so we took the dogs to the Toutle river to cool off and have a little fun. Our black Labrador " Cash " is 13 years old and this was the first time he acted his age. He is such a good dog. I know he won't be with us for too much longer. I wish we didn't have to get old. I wish we could stay the way we are right now.  He swam across the river and back twice chasing after us but then was content to lay in the sun. He is grey in the muzzle and long in the tooth. I will miss that dang dog. Our daughter turned 16 a month ago. She will be out of High School and on to Nursing School in just two short years. My eldest grand-daughter is already 8 years old. The time slips away. One day I will be like Cash. One day I will no longer be able to do those things that I enjoy so very much.

    The days are rare. There is only one of each of them. They slip away quietly until they are gone. I find it sad that I spent 3/4 of my life without paying attention to them. I never saw the beauty of the sunset or rejoiced with the birds as the first light of day greeted the world. It took so long to see what a wonderful place it is in which we live. I never saw how much there is to live for until I was forced to face my own mortality. I hope that as my children and grand-children grow that I can impart this one lesson learned. The days are rare. Don't let a moment slip away. Open your eyes to all that is around you. Life is such an amazing gift. Don't squander it on that which is material. Most of what I have spoke of  here was learned from my wife. Thank you Mandy for showing me the light. yolo, Todd

Tuesday, July 15, 2014

I would change nothing

   Today I read a scientific paper linking vasectomy surgery to advanced aggressive prostate cancer. The article took me back to 1988. At the time I was married with three children. My wife was adamant that she did not want to have anymore babies. I believed at the time that I was never going to get a divorce. My thought process was simple, it was much easier for me to have a procedure than it was for her. Although in my heart I would have preferred to have more children, I reluctantly went through with it and at the age of 26 I became a gelding. Five years later we divorced. She remarried a couple years later and had another baby. My procedure was irreversible. I confronted her one day, saying, I thought you didn't want to have anymore children. She said, I didn't want to have anymore children with you. 
    Flash forward 16 years and I develop aggressive, advanced prostate cancer.
   I have had most of the morning to ponder this quagmire and have come to the conclusion that if my life could be done over that I would change nothing. Don't get me wrong. We all have a number of things we have said or done that given the opportunity we would do differently but those are the little things. As my junior high school physical education teacher use to say. " Don't sweat the small stuff seals "
I am referring to the big picture. The life changing events. 
    Through the course of my journey, and with he help of some good friends, I have come to see that every step of a persons life has brought them to the place they stand today. I realize that this sounds like a no brainer, obvious statement, but think about it. If any of us had done one thing differently we would not be standing in this place at this time.
    I am extremely happy in my life. I am living out my hopes and dreams with the only person in this world whom I would want to share them with. If I had made a left turn or a right turn along the way I would be doing something else with someone else. Some may call it divine intervention and to be honest I don't quite know where I stand on the subject. I would like to think God has a hand in guiding us to our calling in life but perhaps he just lets us muck it up and sometimes we manage to find our way through the mire. Either way it doesn't matter. I am here because the road took me here. When I wanted to die someone showed me how much I really wanted to live. I needed to know that because without the desire to live I might not be able to survive what was coming. When I thought I might die, I learned how to live. Learning how to live opened the door to all the possibilities that life has to offer. If I hadn't of lost my home, I wouldn't be living where I live today. If I hadn't of gone through hard times then I might not have a heart of compassion. The list is endless and I could give example after example but they all lead to the same truth. I am here in this place with the woman I love because of the aggregate life events. Cancer played an enormous role in making me the person I am today. Were it not for cancer I may have never become the man my wife adores. 
   We spent the last two weekends at our favorite lake. We were with friends and family both weekends. I have never been so happy in my entire life. The Caribbean is still fresh in our memory and yet we are already planning a trip to the Aloha State. We have yet to choose an island but we will be going in late March or early April. I would like to go to Molakai or the big island. Time will tell. Prior to cancer I really never cared to travel. Cancer has given us so many good friends throughout North America and beyond. 
   I love where I am in my life. I went through a lot to get here. The road was not always easy and I lost many pieces of myself along the way. When I am in my shop I know that it takes a lot of sanding to bring out the true beauty of the wood grain. Maybe that is what the hard times are all about. Perhaps it is God's way of taking off the rough edges until the world is able to see the beauty of the human being we are called to be. Y.O.L.O. Todd

Monday, July 7, 2014

Living life out loud

    Vacation! It is the reason for all the long hours. There is no other reason to work so hard the rest of the year.
   We left rain soaked Washington on June 20th for the warmth of the Caribbean and sailed aboard the Norwegian Getaway on Saturday June, 22. As we left the harbor in Miami a lightning storm provided the fanfare! Sailing with Mandy and I was our youngest and my eldest daughters. With the four of us sharing a stateroom it was clear from the start that romance would be difficult if not impossible. We still managed to eke out some quality time but I am forced to admit this was mostly due to Mandy refusing to take no for an answer. I am blessed to have a wife of immense patience. I question often why she loves me the way she does but who am I to argue.
   The ship was beautiful and sparkled like a brand new penny. It was only our second cruise and our first aboard one of new large ships. I must admit that I prefer the smaller ships if only for the fact that they are less crowded. Aside from the crowd, the time spent at sea was of the highest caliber of quality. The food was excellent and the service was great. The ship's crew spared no expense making guests feel special. It took the entire week to explore the ship and at the end there were still things we hadn't seen. We spent our afternoons soaking up the warmth of the sun and cooling off in the pool. The water park on board was crowded with kids but the slides were worth the wait in line. We played basketball on the sports court and had a good time watching our 16 year old beat up on the boys by consistently sinking three pointers. We never made it to the rope course, the climbing wall, or the miniature golf course. We were excited to see the reggae band " Groove International" aboard the Getaway. They were the band aboard the Jewel last December. I was able to spend some time on stage and we had a great time getting to know them. 
   On Tuesday the 25th of June we docked at St. Maarten. We left the ship and boarded a water taxi for the far side of the bay. It cost us $30 dollars for 4 beach loungers and 2 umbrellas for the day. A bucket of Corona was 10 bucks. Blue sky, azure waters, a warm breeze, and ice cold beer made for a perfect day in paradise.
My eldest daughter bought a liter of Malibu Rum for $11 dollars and for another $10 dollars the locals kept her supplied with orange juice and ice the entire day. With a little help from Mandy she nearly finished off the bottle and we thought we might have to carry her back to the ship. The carribbean was the perfect backdrop for the picture below. What Hailey didn't realize was that while setting up for the photo the bottle was knocked over and partially filled with sea water. She never noticed the difference but Mandy and I got a good a chuckle out of it.

    We returned to the ship at 6pm sunburned and sticky sweet from a day spent sunbathing and swimming in the ocean. After we had all showered and rubbed in ample amounts of of aloe Vera we headed to "Taste" for a delicious meal before heading out to resume exploring the ship. It was late by the time we finally returned to our state room. I don't recall my head hitting the pillow that evening. When morning came we were already docked in St. Thomas. 
   We left the ship in St. Thomas and took a taxi to the most beautiful place I have ever seen. It is called Meagan's Bay and the beach in St. Maarten paled in comparison. Most of the day was alcohol free until we returned to town and stopped at senior frogg's on our way back to the ship. It was a very relaxing day. Mandy and I left our mark on the beach. Mandy learned to snorkel. I would love to spend an entire week there.


   After St. Thomas, we had one final day at sea. Amanda and I were tired of the crowds and needed a little space from our daughters so we sought sollice at the vibe beach club onboard the ship. It was a small cover charge but we had our choice of the 75 padded lounge chairs as there were only a dozen people in the place. It was a day spent reading and drinking yummy raspberry mojito's from the private bar soaking in a private hot tub and enjoying the view of the ocean as it stretched out before us. It was by far our best sea day and the girls didn't mind having the run of the ship to themselves.

    Nassau was my least favorite port of call but ironically holds my favorite memory. We were caught in a rainstorm and were instantly soaked to the bone. Our scooter refused to start so we danced in the rain.
It is a memory I will never forget.
    There is so much more to talk about. We saw shows. We won a few bucks at the casino. We lived life out loud. We went to comedy clubs. We played in game shows. We danced.The important things have been said. It was an amazing vacation and one I will never forget. It was made perfect by having the love of my life by my side. 

   We left the ship at 10am Saturday June 29 and arrived home in Toutle WA. Sunday morning at 3am. We were exhausted yet fulfilled. Amanda was back at work Monday morning but we spent the 4th of July weekend camping with family and friends at our favorite lake. The water is still cold but we donned wet suits and water skied anyway. 
   Vacation is over. I am sitting at work wishing I could find the motivation to do something. I find my mind drifting off to a place filled with Palm trees and rum. My blood work came back undetectable. For the moment I am cancer free. Summer has just begun. Life is good.Y.O.L.O. Todd






 

    






   

Thursday, June 12, 2014

Contract negotiations

Every 4 or 5 years during the first couple months of summer our lives are placed on hold while the union and the company hash out a new contract. This, unfortunately, is one of those years. I first experienced this phenomena in June of 2000. I was a new hire at the time. I had worked at Longview Fibre 9 months prior to the contract expiring. It was a fair contract that year. We recieved 3% raise per year for 4 years. Our pension at the time was over funded so excess interest was divided up among hourly employees. We each recieved $1,100 dollars per year of service to keep in a cash account for our golden years. As a new hire I recieved the 5 year minimum amount. Four years later it was much the same. The raises were a little smaller and there were no cash bonuses but there were also no take aways. The contract of 2004 was the last good contract we have seen in 10 years. Shortly after that the company sold to an investment firm who set to work cutting the work force in half and shutting down 7 of the 12 paper machines. We felt lucky if we still had a job. The mill site had been using the 650 million acres of timberland to offset annual losses. The new owners separated the mill from the timber and gave us the option to sink or swim. We learned how to swim. The new owners told us at the time they bought the company that there would be changes and a lot of jobs would disappear. They also told us that for those who remained we would be rewarded if the mill became profitable. They were honest about the first two statements. 
   Four years ago are reward amounted to an anemic 1% annual raise and the end of our defined pension. My pension was frozen at $582 a month. Any hope of a good retirement relies solely on the stock market and my 401k.
   Last year Brookfield asset management sold the mill to Kapstone paper and packaging. We were thrilled to once again be owned by a paper maker. We had just completed our most successful year ever recorded, beating our projected profit goal by an entire year and $17 million dollars. We had made 217 million dollars a year earlier than we were asked to do.
Elated to be owned by a new company and having happy stock holders who were receiving large dividends, we were cautiously optimistic that we would finally be rewarded for the long hours and dedication we had demonstrated over the last 6 years. So far, it appears that we were mistaken.
   Last week the company presented their first offer. I feel as though I have been slapped in the face. They are asking for a 5 year contract that gives us 1% raises each year and strips us of over $300 dollars a month in benefits. I realize it is early in the game but I feel sick inside.
   Ever since my diagnosis 8 years ago my view of the world has changed somewhat. I have more respect for life. I rarely will squash a bug unless it is a spider which I have deemed far too scarey to live. I see things in a different light I suppose. I am appalled at the all encompassing greed of the world. I expect it but for some reason it still surprises me. When will the haves of the world have enough that they no longer need to take it from the have nots?. How much money is enough? The value of our currency keeps dropping. The 4% pay raise I recieved over the last five years is eclipsed by the rate of inflation. The city of Seattle legislated a $15 an hour minimum wage. Soon the cost of goods and services will be such that people like myself working skilled labor professions will no longer be able to provide for their families. Once upon a time labor unions got greedy. They went too far and Ronald Reagan took away their claws. Many of the gains my father and grandfather fought for are gone. The pendulum has swung and labor must once again fight for their piece of the American dream. I fear blood will once again flow until balance is restored. It is we who run and maintain the machine. It is we who drive this economy down the road. It is we who must stand as idle observers when the wheels fall off. We can no longer be passive as our incomes shrink and our share of the social safety net grows. I do not wish for a strike but I will walk the line for throse who are forced to live out the legacy if men who are afraid to stand up for what is right. Todd
   

Thursday, May 29, 2014

Owning the battle

    I am sitting in the infusion room with an IV in my arm. I only have to do this every four months. I come here alone. Usually it is because Mandy is working. Today she had the day off and wanted to keep me company during my infusion. I told her that I didn't want her here. I don't know if she understood and to be honest I don't know if I understand why but today as I write I will be attempting to define my emotions surrounding the infusion room as it pertains to my wife
   I am just now beginning to understand the way this disease impacts the ones we love. We call them caregivers. Prior to cancer we may have called them are soulmate. I used to share everything with Mandy. This is an aspect of the disease that I refuse to share. In the infusion room cancer becomes real. In some ways I think maybe I am attempting to protect Mandy. Cancer takes it's toll on the ones we love. We don't have to share everything. Maybe I'm wrong but I do feel the need to shelter my bride. She worries enough. Even as I write this I just now had to give her a call. The nurse hung my IV bag but hadn't hooked it up. I have been sitting in this chair for an hour and 45 minutes. They just now started the drip I had to let her know that I was going to be late and not to worry. She was livid. She has worked in a clinic for 16 years said that she would never treat a patient that way. She said there is no excuse for that. This post istaeted off to be one thing but is now something entirely different. I'm sitting in the corner by myself. There is only one other patients in the infusion room. There is a head nurse and three medical assistants walking around bullshitting with each other as I sat in this chair for an hour and a half without anything being done. An infusion that should've taken an hour will now take a minimum of three. My employer pays Kaiser Permanente $20,000 year for my health insurance. $20,000 a year to be set in a corner and ignored. No one talks to me. No one checks on me. I will sit here by myself until the alarm goes off. I am completely pissed off at the moment. I worked a 12 hour graveyard shift last night. I got four hours sleep. I had Amanda wake me at noon in order for me to be at my appointment on time. I'm tired and I'm grouchy. The company I work for is in the middle of bargaining a new contract with the union that represents us. It is the company's intent to no longer offer Kaiser Permanente as a health insurance option. At this point I really hope they get what they want. I'm getting really sick and tired of the take a number and wait in line health care mentality. I'm getting really sick and tired of the lack of personal care. Sometimes I feel the patients of Kaiser Permanente are treated no better than cattle herded through the Feed lot. My butt hurts and I want to go home. I am so thankful that I only have to go through this procedure once every four months. The bag is almost empty soon they will just be able to flush the line was saline. With any kind of luck I will be out of here in another hour. The sun is shining.  I want to be on the lake or hiking in the woods. I want to be anywhere but here. 
    I am very thankful that Amanda's not here right now. And in saying that this blog post has come full circle. We can shelter those we love from this disease. Not all of it of course but definitely from some of the day to day things that serve to remind them that we have a terminal disease. Thank all of you for reading and God bless. Todd

Wednesday, May 28, 2014

Taking the summer off I think

Hi everyone,
   One of the biggest challenges in dealing with this disease for me is maintaining my sanity. Every month I get new blood work and it always includes the usual P.S.A. test. Aside from the monthly anxiety about this test I do really well. Usually the anxiety comes a few days before the test and climaxes as I log on to check the results. There have been times when my hands tremble as I enter my password. It would be no different on Thursday May 29 except I have decided to take the summer off from cancer. I will still have to go in every month for blood work but Thursday I will not be having my P.S.A. tested. I will not spend restless nights waiting on test results. I will not live my life 30 days at a time this year. I am in remission. I will stay in remission all summer long!!! 
Cancer is powerless. It cannot steal my joy. It cannot break my spirit. It cannot cause me to lose faith. It cannot take away the love in my heart. It cannot kill my love of laughter. It will not take my life. It will not steal my courage. 
   Mandy my daughters and I will depart on an eastern Caribbean cruise on Saturday, June 21. I have never been able to take any of my children on a vacation like this. It is my hope that this will be the first of many vacations. I hope that in the near future I will be able to take my sons as well. When we fly to Miami on the 20th I will be leaving cancer behind. I won't think about it. I won't worry about it. I will spend time under the warm Caribbean sun with my family living life out loud.
   When a person has cancer it becomes an all encompassing part of life. For eight years now cancer has been the underlying focal point in everything we do.  Our life revolves around doctor visits blood tests and treatments. Mandy is tired of it and I'm tired of it as well. I will still write my blog and I will still post at healingwell.com. I will go to my monthly appointments but that is all. It is 2 am. 5 more hours and I get to go home. Good night everyone. Todd

Saturday, May 17, 2014

Stand your ground

    Knowledge is power. That is the first rule I learned in my war on prostate cancer. Nobody, not your doctor, not the insurance companies, not the pharmaceutical companies, will put your interests first in this fight. I was fortunate to learn this lesson early on. I was educated by those who had come before me. One man in particular, Zufus, is a master at thinking outside the box. His ideology in treatment selection might not be right for everyone but they work for him. I was fortunate in my battle. The first line of defense in stage four prostate cancer, A.D.T. , continued to be effective for five full years. I spent the bulk of this time arming myself with information. I spent many hours at the computer researching current available treatments as well as clinical trials. It was a very frustrating time in my life. Many of the available treatments were not effective for long periods of time. There was however, hope on the horizon. A new biotech company, Dendreon, was conducting A phase 3 clinical trial on a revolutionary medication that harnessed a person's own immune system to combat prostate cancer. Sipuleucel-t or Provenge, was the first treatment of it's kind. It was a true cancer vaccine. Although Provenge was not a cure, it was hope to those who had very little hope at all. I knew early on that when hormone therapy eventually failed the next treatment I would pursue would be Provenge.
   Counting a one year vacation from treatment, hormone therapy lasted a full five years. Midway through year number six it became obvious that hormones were no longer doing the job. I was facing a rapidly rising P.S.A. and I was beginning to feel sick again. It was during an oncology visit that my doctor concurred a change in treatment was necessary. He offered five or six different treatment options for me to weigh in on. The last one he mentioned was Provenge.
   When Provenge first received approval by the F.D.A. I was elated. My elation soon turned to discouragement when the product label stated that lung metastasis was excluded. I would not be able to receive Provenge. However, by the time I needed Provenge the exclusion had been lifted by the C.M.S.
    I didn't need to think about it. I had five years to think about it. I believed in my heart that for a treatment plan to have any kind of long term success it would have to begin with Provenge. Blood tests, CT scans, and bone scans, were ordered to see if I was a good candidate for the treatment. It came back as a mixed review. In her own words, my case manager stated that I was "the perfect candidate for Provenge" My doctor saw things differently. The CT scan had revealed a small lesion in my right lung. Citing the product label excluding lung metastasis he would not prescribe me the medication. Mandy and I were devastated. In our hearts and minds Provenge was hope. We appealed and won the first battle based on the C.M.S. Decision to drop the exclusion for lung metastasis. It was however, to be a short lived victory. There was at this time, an editorial written by a stock analyst, in  the journal of the National Cancer Institute circulating throughout the medical community. The article, authored by the world renowned scientist "Marie Hubor" accused Dendreon of comparing the medication to a faulty placebo. It didn't matter that the author of the article was not qualified to write the document. It didn't matter that her hypothesis had been debunked as bad science. My doctor cited this article to deny me the medication. I will never forget the words he said over the phone that day. "Mr. Seals there is new scientific evidence that proves beyond a shadow of a doubt that this treatment will not work for you because you are too young. It may in fact make your situation worse" 
   My PSA was doubling every six weeks. Mandy and I were scared. How much worse could it get? 
   We would not be deterred. Provenge was the right choice.  Provenge  was the only choice. We made the decision to set the course and to not be moved from it. We began the appeals process while simultaneously searching for another way to receive the medication. We found a doctor in Las Vegas Nevada who would prescribe me the medication. We contacted the patient assistance program through Dendreon in order to receive the medication as soon as possible once we had exhausted the appeals process. We made an appointment to see the doctor in Nevada in early April 2012. Two days prior to leaving for Nevada we received a call from my case manager at kaiser Permanente. The Washington state insurance commissioner had ruled in our favor. In his decision he stated that Kaiser Permanente had made the decision not to prescribe on nothing more than speculation. I was to receive the medication at the earliest possible date.
We kept our appointment with the doctor in Nevada. He has been invaluable in our fight against this disease. 
   A lot of people have already heard this story and perhaps to some it is old news. It is my belief that everybody needs to hear the story. I could've rolled over like an abused dog and urinated all over myself. I could've been a good submissive little patient and done precisely what my doctor said but my doctor was wrong. My doctor was wrong when he told me I only had a year to live. My doctor was wrong when he told me that hormone therapy would only last a couple years. My doctor was wrong when he told me that Provenge  would not work for me. The fact is Provenge is still working for me. 
   There are some places where I cannot speak my mind. This is my blog and by the very facet of the possessive is not one of those places. Provenge is expensive. Provenge therapy $97,000. Lucopherysis and infusions $35,000 ballpark, office visits scans and blood work to qualify, $10,000 In my humble opinion this was the real reason kaiser denied Provenge to me........ Fourteen side effect free, progression free months..... Priceless!!!.
    14 months after receiving Provenge it was time to find another treatment. Perhaps it was unnecessary. PSA is not a good indicator as to whether or not Provenge is working. Nevertheless my PSA was rising and it was difficult for me to sit back and watch it rise. I began Zytiga 10 months ago. My PSA has fallen from 29 to an undetectable level. I am in remission. Nobody knows how long this remission will last. We hope it will be for a long time. It gives me great comfort to know that there are new cutting edge medications on the horizon. It gives me peace knowing that my own immune system has been empowered and is still hard at work beating the crap out of cancer.
   The title of this post is Stand Your Ground. It really is an appropriate title.
We as cancer patients must look out for our own best interests. Nobody else will do it for us. Bringing cancer medication to market is expensive. This makes cancer medications very expensive. I hope I never lived to see the day where the cost of the medication will outweigh the value placed on the human life. We are advocates. We are the frontline. We are band of brothers fighting a war that is inclusive of all aspects of this disease. Stand your ground. Make sure that your doctors are doing what is best for you. Our friends, our wives and families, our grandchildren, they all need us. Stand your ground because in the words of a very good friend, "We Will beat this crap!!" Todd

Tuesday, May 13, 2014

Graveyard shift

3:39 a.m. Tuesday, May 13. I have had very little to do this evening and time is moving at a snails pace. I am the lone pipe fitter in my area and I have nobody to talk to. I have entertained myself playing spider solitaire and Minesweeper. I have perused websites dedicated to those who monitor black helicopters. I must say it was quite entertaining. The odd thing about conspiracy theorists is that what they're saying makes sense for a little while then they just go way too far and you see that they're absolutely insane. I spent a little bit of time checking in on my friends at healing well.com. I ate three maple bars. In two more hours I will be able to call Mandy to give her a wake up call. In 3 1/2 hours I will be halfway home. I can't wait to jump into a nice hot shower and then get some much-needed sleep. Ordinarily on a tour shift rotation I will work two12 hour day shifts followed by two 12 hour night shifts followed by four days off. This week I have to come in on one of my days off for a machine overhaul. When I left the house last evening I glanced at my retirement clock. The timer is already down to 236 days. It's amazing to me how quickly time passes. I hate this place. There was a time not long ago when it felt good to come to work. This company used to be owned by a local family. Back then it wasn't real profitable but you knew that the owners cared about the employees. It doesn't feel that way anymore. Now days we are expected to do more for less. it's a contract year. Four years ago during contract negotiations we lost our pension. Contract negotiations began two weeks ago and the company has already presented us with a long list of takeaways. One of those takeaways may very well adversely affect my retirement plans. Currently if an employee receives a disability retirement, the employee will receive 75% of the life insurance policy the company has on the employee as a retirement benefit. It's not a lot of money in the grand scheme of things but to a person who will no longer be receiving a paycheck it can make a substantial difference in post employment finances.    in my case it literally will be the deciding factor whether or not I can retire in January. The company wants to take this benefit away from us. There are a lot of other takeaways on their two page list but this is the one that will impact my future the most. Eight years ago when this company was bought out things begin to change. In many ways I'm grateful for the change. The business was losing money. There was no job security and really no hope for the future. From the onset of acquisition by the new owners changes began. The workforce was cut from 1200 hourly employees to 700. At the time of acquisition there were 12 paper machines at this facility. Now there are only five. The new owners promised us that yes, changes would be made jobs would be lost, but for those who were left,  they would be rewarded. The new owners set production and profitability goals. They asked a lot of us and we did everything that they asked. We exceeded profitability and production goals and did it a year earlier then their projected timeline. Perhaps I am na├»ve but I was actually cautiously optimistic about the upcoming contract negotiations this year. I really felt like we were going to be rewarded for our hard work. After several meetings between the bargaining board and the company I now feel like I have been slapped in the face. We have done every thing that they asked of us and more. We have worked long hard hours every day every week for the last four years. We have brought this company from the verge of closure to being one of the most profitable mills in the country. I suppose we should be happy that the new owners didn't pack up the whole mill and ship it to China. Personally, the way I feel right now, I wish they would have. 
I'm tired. I know I'm whining but I think I'm just a little frustrated. I also have a real understanding about the way things work. I know that a lot of the items on this list is simply posturing. After all, if the union is going to come in asking for improvements in wages and benefits, then the company has no choice but to present the union a list of takeaways. The problem is ithat some of these takeaways will certainly come to fruition when the contract is ratified. The union is tasked with providing the best contract for the majority of the membership. Until the contract is ratified my future is left uncertain. Had I known that the life insurance benefit would be on the chopping block I would have initiated disability retirement months ago. Now it may very well be too late. I've crunched the numbers and if I lose the disability benefit it will mean that I have to stay here for two more years. For most people two years really isn't that long. To a person with stage four cancer two years could be a lifetime. I don't want to retire because I'm too sick to work. I want to be able to retire and enjoy a few years of not working. When I was diagnosed I never thought I'd see 50. I actually never thought I'd live long enough to receive my journeyman rating as a pipefitter. I sure as heck didn't believe I'd live long enough to retire. Right now retirement for me is a reality. I may actually get to spend a few years not working and enjoying all the benefits that retirement has to offer. I really hope so. Todd