Tuesday, December 24, 2013

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

Saturday, December 14, 2013

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

Monday, December 9, 2013


    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