I love Christmas

    It is six a.m. on Christmas Eve day. I am at the the mill for 7 more hours and then I am free. I love this holiday . I love Christmas. I love everything about it. I love the food, the music, and having family over. I love the tree and the lights.  Mostly I love to give gifts. I am a sucker for Christmas. Mandy balances me. There was a time that I would spend money we didn't have to give nice gifts to the people we love. Mandy introduced me to a new concept. It's called a savings account. They should have had those things years ago.   Sometimes it is still tempting to pull out that little piece of plastic but this year I was a good boy. Maybe Santa will put a little something extra under the tree for me because I was so good. Miracles can happen. 

   In our family Christmas Eve is the big family get together. When we bought our home in 2006 my mom was thrilled that it had a large family room on the back of the house. Christmas Eve has been at our place every year since. The past few days have been spent getting our home ready. Mandy has been busy baking and making her smoked salmon dip. The prime rib is seasoned and warming to room temperature. The tree looks beautiful. I felt like a little kid this morning. I haven't felt like this in a long time.

   Last year was the first year without Grampa. My gramma past away the year Mandy and I were married. I miss them the most at Christmas time. I am certain they will be close by. 

   This morning I woke up at 4:30 to be at work by 6:00. I cannot describe the feeling I had inside as I stood in the kitchen making coffee and looking at our daughter asleep on the sofa under a pile of blankets. She stayed up late to finish wrapping gifts for her mom and fell asleep to the glow of the tree lights and of course to the light of the television. There was a cat on each side of her and they must have been cozy as they didn't even come to get their morning piece of turkey. I felt such a warmth in my heart. It was like everything in my world was as it should be. Yes.... There is a Santa Clause. 

   As I was writing this I remembered that I had an oncology appointment yesterday and among other things they drew blood for a P.S.A. I took a break from writing to visit the Kaiser website and check my latest numbers. The numbers dropped again for the fifth consecutive month. I am now all the way down to 0.29. I cannot believe that after 91 months I am still close to zero. I guess I won't be needing anything extra in my stocking after all . What an amazing wonderful Christmas present.

    As I said previously I love Christmas. It hasn't always been this way. When you live in a garage for three years you don't even bother putting up a tree. I didn't have the money for one anyway. One year during that time in my life I did a drive by at a Christmas tree farm and stole one that was growing near the road. Looking back upon that time of my life truly makes me thankful for the blessings in my life. I don't deserve them. There were a host of angels that brought me from the darkness to the light. I will never forget them. Some were merely people who were put in my life when God knew I needed them and I believe some were truly angels. It is Christmas time. It is the season for miracles. I believe in them because I am one. Merry Christmas. Todd

The tide turns

    In January of 2012 faced with a rising P.S.A. and growing metastasis despite continued androgen deprivation therapy I approached my Oncologist at Kaiser Permanente about possible options in my treatment. He informed that there were three possible options available to me. He mentioned Taxotere, Zytiga, and Provenge. I had been following the Provenge saga since my diagnosis in 2006 and I was excited to be a potential candidate for the therapy. After the blood work was completed my case manager told me I was a perfect candidate for Provenge. Mandy and I were elated. We began to plan for the 7 weeks I would be required to miss work and to get all of our other ducks in a row. It was at this time that a C.T. scan was ordered. The scan revealed that I had a 1.5 cm metastasis in my left lung. My oncologist said that due to the lung metastasis I was no longer a Provenge candidate. We appealed the decision citing recent changes to he C.M.S. guidelines stating the only exclusion to Provenge use was Hepatic (liver) metastasis and we were once again placed on the list. A few weeks later in mid February I received a call from my Oncologist. He was calling to inform me that a new scientific study published in the Journal of the National Cancer Institute has proven that Provenge would not work for me. He told me that the evidence had shown I was too young and that Provenge might actually cause the cancer to advance expediatly. Mandy and I were crushed. Once again we were taken off the list. I began to post our frustrations on Healingwell.com. I received a lot of encouragement and a lot of good advice and also to my surprise I began to receive information from an unknown source that the scientific article that my doctor was citing might not pass the smell test. We began to look into things a little deeper and made the decision to fight Kaiser Permanente foregoing all other treatment in an endeavor to receive Provenge. We appealed the decision all the way to the Washington State Insurance Commissioner who ruled in our favor stating that Kaiser had made the decision not to treat on speculation and unproven scientific documentation..

   At this point I must digress. Our appeal process with Kaiser took roughly two months. During this time my Psa had risen from 22 to over 100. It was doubling ever 6 weeks and I began to feel sick again. We were afraid but we knew in our hearts that if we were to have any kind of longevity that I had to receive Provenge first. We began to formulate our backup plan. We would apply for patient assistance through the folks at Dendreon and we would go outside of our H.M.O. Network and see a doctor who would prescribe Provenge. We made an appointment to see an expert in the field of Prostate cancer research who was based in Las Vegas Nevada. The people at Dendreon were wonderful to work with and they helped us every step of the way. My healingwell family who had been following the saga online donated enough money to cover the cost of the trip and for the cost of the appointment. We began to feel confident that no matter what, Provenge therapy was going to happen. We purchased our plane tickets reserved a modest room in Las Vegas and made the appointment with Dr. V. Two days before departure my case manager at Kaiser called to inform me that the State of Washington had ruled in my favor. I was to receive my first Provenge treatment the first week of May, 2012. We had won. I cannot fully describe how we felt inside upon hearing this wonderful news. We cried tears of elation and relief. It was over. We went ahead and kept our appointment with Dr. V as part of the ruling recognized him as an expert in the field and Kaiser was ordered to follow any clinical advice from him verbatim. With the sweet tase of victory frown on our lips we headed to Vegas to meet one of the many people who had made it possible and to celebrate with a very good friend who also was a prostate cancer survivor.

    At the core of Kaisers decision not to provided treatment was the fore mentioned article authored by a Ms. Marie Huber. I had read the article( at least the parts I could understand) and found it ironic that the opinion of a stock analyst with a minor in bioscience could gain so much traction. There were many others within the scientific community that referred to the article as junk science and yet because of this woman's opinion I almost did not receive this potentially life saving treatment. Recently the S.E.C. Filed charges, fined, and suspended Ms. Huber for 6 months on grounds that she essentially used her influence to mislead the medical community while along she would lose massive amounts of money if the price of Dendreon stock did not go in the toilet. I do not claim to know the facts other than what I have read and that is very little to be honest but I know enough. It sickens me that the greed of a few could impact the lives of so many. I am so angry right now it isn't funny. How many men lacked the testicular fortitude to fight for the right to be treated with Provenge having been denied based on the same piece of crap article are no longer with us today. Provenge gave me 14 side effect free, progression free, months before we had to go to another treatment. In the humble opinion of this man she should face charges of unintentional man slaughter. 

   I have many friends within the Dendreon community who have been struggling to keep the ship afloat largely due to the same article that caused me so much anguish. I wish a pro bono attorney would file a law suit against the witch on behalf of me and so many others whose lives were affected by ms. Huber. I pray that Dendreon can right the ship and repair the damage that was done by her lies. Bottom line he treatment works and I will be here many more years because of it. This is just another example of how greed, big money, and Wall Street affect the lives of those of us on main street. Todd

GFMPH

    Two hours from home aboard a Boeing 767. Mandy is 300 pages into her Nicholas Sparks novel and I just witnessed my team suffer their second loss of the season to the 49ers. We are both excited to be close to home. We miss our kids and our dog but we are also sad that we had to say goodbye to our new friends this morning. It was an amazing week. I now fully understand the true meaning of GFMPH

   Several years ago a group of online friends decided it was time for a gathering. They had known each other for years but had never met. All of them shared a common bond. They were all survivors of prostate cancer whom had met on an online forum. This gathering became known as GFMPH. G.F.M.P.H. Is an acronym. It stands for good for my prostate health.  What started as a gathering of a few has grown each year and this last week Mandy and I attended our first such gathering. Although this one was much different from the others it was still nothing short of life changing. 

    Last Saturday Mandy and I landed in the "Big Easy" to embark on the first ever G.F.M.P.H Caribbean cruise. Aboard the N.C.L. Jewel we shared 7 days and nights of bonding with 13 other Prostate Cancer Survivors and their wives under the warmth of the Caribbean sun. We met Saturday evening on the eve of the cruise for an authentic Cajun meal. It was there that many of us met face to face for the first time. We quickly learned that cancer was not our only commonality. It seemed we all love to laugh as well. We knew that evening that the following week was going to be fun but we had no idea that we would come away from the gathering with 26 new family members. 

    Normally these gatherings take place at a forum members home and tend to be more intimate due to the confinement of being in a single location.  Being on an enormous cruise ship and traveling from port to port spreads things out a little. We were surrounded by a few thousand strangers and spread out over several decks of the ship.  We however had a week and the previous gatherings were only for a weekend.  We made the most of the time spent together.

   I never had a complete understanding of the GFMPH gatherings prior to this week. They always sounded like a lot of fun but life changing? I had my doubts. They always occurred a long ways from the west coast. Going to some guys home that I had never met to hang out with a bunch of people I had never met seemed a little weird. I had met only three of my healingwell.com brothers over the years and although upon meeting them we knew we were friends for life I just couldn't grasp the idea of these gatherings. 

    Last March I had the privilege meeting and sharring a meal with two of my healingwell brothers. Waterguy started talking to me that evening about going on the cruise. I told him we would think about it but it was so close to Christmas and our daughter is in high school so I really couldn't see us going. I was wrong. My buddy would not let it rest. I am thankful for his dogmatic attitude. Two months ago he basically told me " Todd, you and Mandy are going on this cruise"
   I can only say so much about this gathering. What happens at gfmph stays at gfmph. The members elect to remain anonymous. The time we spent together however was worth every dime. It's funny how being around other people facing the same demons as yourself can actually make you feel healthier and stronger in your fight. Mandy and I walked away feeling less alone in our situation. I have known most of these people for the better part of six years. Now I have a face to go along with their names. Instead of a screen name and a post on a forum I know I am talking with my family.
   I encourage the folks from ( healingwell.com prostate cancer) to get involved with gfmph and do your best to try and make it to a gathering. It will feel awkward for about five minutes. After that it will feel like coming home. I encourage those who have not found ( healingwell.com Prostate Cancer Forum) to look it up. You will find truth in the statement "no one fights alone"
   The next gathering is in Florida in March. We will be unable to attend that one as I cannot secure the time away from work. We are already planning September in New York though. I guess once you have been to a GFMPH you just naturally want to go to another. Yes my friends, they are that good. My good friend Raddad loved them. I never met him but wish I had. His enthusiasm and faith were contagious. Jennifer if you read this I can only say thank you. I will be sending many photo's in the future. Your father was a wonderful man. He was the best friend I never met and I miss him. That's all I have to say right now. Don't get me wrong. There is much more to say but I am still digesting in my heart what took place this last week. God Bless..... Todd

    

49 and holding

Age is just a number so the saying goes. You're only as old as you feel. Fifty is the new Forty.  I have heard them all. In a little over two weeks I will find out for myself.
    Fifty is an age nobody thought I would see. As I near the half century milestone I will also pass another significant milestone. I will be a 90 month survivor of stage 4 Prostate cancer.
   As we walk through life the milemarkers along the way have meaning. At age 5 we start school. That was my least favorite at the time but I also got my first b.b. gun that Christmas so it made up for the school thing a little bit. At age 8 I was able to go hunting with my dad and bagged my first buck. The tradition of hunting with dad has endured for 41 years. Sixteen was a no- brainer. My first car was a 1962 Chevy impala. It had a 283 with a two speed powerglide transmission. The engine had a flat cam so dad and I rebuilt a 327 in the garage and dropped it in. We painted it starburst metallic fireball red and put a set of crager coke bottle rims on it. The interior was restored and a pioneer supertuner 8 track deck was mounted above the console feeding jenson triaxial speakers in the rear deck. I miss that car. At 18 I graduated and got my first apartment. It was a bittersweet occasion.  21 was fun for a while. Not so fun the morning after. At 25 my car insurance dropped to the good rates. I was married had three kids too many bills and too small a paycheck. At 30 I was separated from my wife and living in a studio apartment trying to make it all work. It didn't.  At forty I had lost it all and was a junky living in a garage. I celebrated those two significant milestones alone and contemplating suicide. At age 41 I went through with my suicide plan. I lived and at 4 months prior to my 42nd birthday I was born again. At 42 I was diagnosed with advanced cancer and given a year to live.
   I never thought I would see this day but here I am. As I enter the threshold of 50 I would need a ream of paper to single space type my blessings. Eight years ago I had nothing except a job. My kids and family disowned me. I was a mess. My credit rating was in the  300's. I needed a cosigner for a payday loan. I owed $12k in traffic citations.  I owed $20k to the I.R.S. I stopped answering my phone as it was most likely a bill collection service. I was lonely.  I was alone. I wanted to die.
    Today I am married to the love of my life. My relationship with my children and my family is better than it has ever been. I have a mortgage on a modest but comfortable home. I have a Dodge diesel in the drive with a new camper on one side and my wifes kia soul on the other. I have a ski boat and snowmobiles in the garage. I am still in debt  to the top of my butt crack but it is for the life I always dreamed of living. My new credit score is nearing 800. There is food on the table and the bills are paid. The wolf is occasionally at the door but I am still a crack shot so he never tries to come in. Best of all this last year has been the best of my life. I have so many friends new and old. I am blessed beyond that which I deserve.
   This year I will turn 50 among 28 of my newest friends with my true love at my side. I am so thankful for this life.
    I have no Idea what I will do at age 60 to top this but I plan on being there among friends and family. Y.O.L.O.

A day in the woods

The air is still. The mist blankets the valley floor. The forest is silent.  I am alone in this place. As daylight breaks over the marsh below the silence is broken by a  myriad of birds greeting the  new day. A chipmunk joins in the chorus and then another. The world is alive. A blacktail deer with her fawn in tow emerge from the jack firs to graze at the edges of the marsh. The fawn was born last spring and has only recently lost it's spots. I think of bambi as it is more interested in running around than eating.
   I love this place. I have hunted this valley since I was eight years old. I hunted when it was covered in dense forest. I hunted it when weyerhaueser clear  cut as far as the eye can see. A new forest has grown up but the marsh remains. It is unchanged. Nobody hunts here anymore. The young trees were planted so tightly that it is impossible to see into them. There is no longer clearcuts to sit and watch from the comfort of a truck. Good riddance. I won't miss them. I am old school  I will hike 10 miles today. I love being in the woods. I love everything about it. For now as I sit motionless in my mossyoak cammo I am a tree. A twig pops somewhere below me. Elk are far from quiet as they roam through the forest. Where are they? Another branch breaks but closer this time. The minutes pass slowly.  The deer walk away and vanish into the trees. Below me the first elk comes into view followed by a dozen more cows and calves. There are no bulls in this herd except for one young spike. The season will be ending in two short days and I have had no luck at all. My dad is a mile below me watching the only cut on the mountain.  He will be wondering where I am. Time to get up and get moving before my  butt freezes to the ground. I wonder if a frozen ass is G.F.M.P.H. haha. Todd

Elk season and other stuff continued.

 

Mandy survived. The wind pounded the coast at 40 m.p.h. and there was not a lot of sleep to be had but she and our daughter stayed warm and dry despite sleeping in a tent just above the surf line. The pictures said a thousand words. The Olympic peninsula is a place of epic beauty. Our daughter received a B+ for the field trip and Mandy had the time of her life.

  I am still hunting elk. My faith in my hunting abilities is waning. I am just not doing very good. I will write more later but once again, I am exhausted. To all of you who follow this blog I apologize but I have just been wiped out when I get home and have a hard time sitting down at the computer. Todd

Hunting season psa and other stuff

Tonight I am a bachelor. Normally this time of year Mandy would be a hunters widow and trust me, for much of the next two weeks she will be, but tonight I am alone and it feels weird. Since our wedding, 61/2 years ago we have only spent 1 night apart. We share everything. We are each others best friend. I am worried about her. Tonight she is a chaperone for a sophomore biology field trip to a place called  Rialto beach on the Olympic peninsula. It is November and it is pouring rain and the wind is blowing and she and our daughter are sleeping in a tent. I miss her. I am sure she is fine but I still worry. I wish she would call me.
   I had some really good news this week on the Prostate Cancer front. My P.S.A. has dropped again. It is now 0.70. This is the lowest it has been in 4 years. It seems the Zytiga is working. The Provenge will help the Zytiga and I will keep fighting. I am excited but I am also exhausted so my true feelings may  not show through my words. I hunted hard today. I did not see a single elk. By the time I got home I was chilled to the bone and soaking wet. Elk hunting is so much easier when you have hunting partners but I hunt with my dad and he is 71 and needs a double knee replacement. Needless to say he has a hard time getting out of the truck. Most of my hunting is done alone. It is really nice to have him waiting at the bottom of the hill with a warm truck and a cup of hot coffee. (or a nip of crown royal to warm the bones.) I know this or the next year maybe the year after will be my last to hunt with my dad. I am going to ride this ride as long as it lasts. My dad is an amazing man. I didn't get his height but we look so much alike. He is 6' tall. I am 5'6" I took after my 5'1" mother. lol He and my mom are both wonderful parents and I have always been proud to be their son. Elk season may not be fruitful this year but we will do our best and hope for a little luck. No matter what it is a good time shared with family. I am going to bed now. Life should slow down soon and I will have much more time to write. Goodnight, Todd