Why me!

I remember that being my first thought seven years ago. Why me? Why did I have to get this disease?
I still ask that very same question but for different reasons. Now I ask why am I doing so well when others are not?
  Last night my family and I were in Target. As we approached the check out line my eyes were drawn to a girl in a wheel chair. Her pant legs dangled empty below the seat of the chair. It was difficult to tell if she had any legs at all. I felt so sick inside. Every day people face hardships that I cannot comprehend.

I have cancer. Big deal!! I look in the mirror and I am ashamed of myself. I have such a wonderful full life. I live in the most beautiful place in the world and have so many blessings I cannot begin to count them. I wonder if  most people realize how good they have it.
   Vince Flynn passed away from aggressive Prostate Cancer this week at the age of 47. He lived three years from diagnosis. That sucks!! He was so young and so talented.  So I ask again. Why do I do so well when so many others do not? Why Me? I don't have any answers. I am thankful.

Losing my friends is the hardest part about having this disease. I want to see them in remission. I want to see them beat up cancer and take it's lunch money. Some do. Some do not. The sickest are always the bravest. They fight and they believe and they hope and pray. They are the ones who are best at encouraging others. I believe it is because they are closer to God. They squeeze every last drop of life out of the days that they have left and then they give it away. They never feel sorry for themselves.
   I started vacation today. We are leaving for Idaho in the morning. I won't be writing until we return next Sunday. At the moment Mandy and our daughter are kayaking on the lake under the super moon. Life is so good. Todd

Stay positive

Stay positive is the mantra of a very good friend of mine. He is a fellow Pca survivor.  He will soon be coming up on 5 years undetectable. I hope he is one of the cured. He deserves it like no other. Long story short.....great guy.

Lately my posts have been more to the glass half empty side of things. That really isn't me at all. I do wear my emotions on my shirt sleaves most of the time so my posts are a reflection of my current emotional state, however even when there is very little to be excited about, I still manage to find joy in some part of the situation. Lately that has not been the case and for that I am sorry.

Yesterday was father's day. I was surprised by a visit from my daughter, her husband, and two of my six granddaughters. Malaia and Madison are beautiful.  I am prejudice but they are beautiful none the less. The first word out of their mouths were "Papa can we go for a ride in your boat " AWESOME.

I grew up on the water. I have been piloting some form of water craft since I was about ten years old. From the age of 12 I spent every weekend of every summer waterskiing.  I wanted my own kids to share in my love of boating and water sports but a divorce in my early thirties put an end to that plan. My grand kids are another matter. They have been on the water since learning to walk. My adult children are starting to dig it too.

Today is Monday. 4 and 1/2 more days until we vacation in northern Idaho. We rented a cabin in Sandpoint along the shores of Lake Pend Orielle. We will Ski and tube and I will drink many cervasa's around the campfire. We will mountain bike the Hiawatha trail and spend a day on the roller coasters at Silverwood. Not a bad week for a guy who was suppose to be dead 6 years ago.

Stay positive and live every day. Todd

Let the Healing begin

The love of my life worked at an O.B. clinic until Friday last. Yesterday we attended the memorial service of  the O.B. Doctor who's great grandfather opened the clinic in 1925. Seeing the clinic close would have been the saddest thing Dr. H could imagine. Not wanting to be around for it he took his life on June 7th. It has been an emotion roller coaster the last 10 days. It was a wonderful service. My heart breaks for his family and friends who are left with questions that will never be answered. In the end all that can really be said is that it was a senseless loss. Dr. H didn't have a Clarence around to show him what a wonderful life he really had. The news paper put an anti Obama spin on the story saying that it was not Kaiser that caused the clinic to close but rather Obamacare. All I have to say to that is BULL-SHIT. I was there for the negotiations. I tried to get them to change their mind. I am sad and angry about the loss of this Doctor. He was a very good man as far as men go. As a testament to that I estimate the number of persons at his memorial to be over 2000. In celebration of his life they danced to a New Orleans Jazz band and the second line had his six.

I still tear up. Our world is changing. I am not sure I like the direction it is going.

In the infusion room I see people fighting for their lives. They hope for weeks, months, years. This man who had it all and then some. This man who was loved by all who knew him. This man who had helped so many and brought over 6000 children into the world took his own life.

I feel like my home town has lost one of the good guys. I feel ripped off.

Todd

Hope

I started this blog because friends told me that many people would benefit from my story. To me there is no other reason to do this. I struggle as a writer. It happens when I write songs also. I get so frustrated as everything I write sounds like something that has already been written. There are a million places on the Web where a man can get information about prostate cancer. So what can I tell you that's different?
     About a year after my diagnosis I found a website called healing well. I was working night shift at the time and there was very little actual work for me to do. I would find myself surfing the web searching for answers to the only two questions that I had back then. What was it like to die from prostate cancer and how long was I going to live? It was a very dark time in my life and the people that I met there gave me hope. Hope is the most powerful weapon we have in our arsenal against this disease. After 6 years at healing well.com , I am one of the veterans. I am one of the guys charged with giving hope to others. I love my job. the problem is that for the most part I can't relate to 80 or 90 percent of the men who find that website. I am going to anger a lot of men with my next statement but I believe it to be true.  In the world of cancer prostate cancer is one of the easiest cancers to cure. it is also one of the more indolent cancers. I can't remember the exact number I read but the amount of men who die in their 70's 80's and 90's who had prostate cancer and didn't know it is staggering. I am NOT one of those guys. I cannot write about catheters or surgeries or how long it took me to stop wetting my pants. I don't know the first thing about penile rehabilitation. If you have found this blog and you are one of those guys. I hope you stick around and I hope you enjoy reading this but you need to realize that a lot of the information will not pertain to you. I have stage 4 prostate cancer. until something changes I will never be cured. I most likely will die of this disease and not with it. The good news is that new cutting edge treatments have turned even late stage prostate cancer into a chronic disease. researchers are learning to harness the immune system to fight the disease. Our focus must be on the living and not on the cancer. If you are a late stage cancer patient and you have found this blog the very first thing I want you to know is that there is hope and I have seven years of living with this disease to prove it. There is hope. there is hope. there is hope.

Happy Tuesday

I hated my alarm clock this morning. 5:30 always comes too soon. We stayed up late last night and finished off a bottle of sparkling wine. We needed it. The stress from the weekend robbed the joy of our anniversary celebration. Mandy will soon be starting her new job. She has a little over a week left and then we are going to Idaho for a well deserved vacation.
   Except for those who know us nobody realizes I have cancer. I like it that way. We are so active. While in Idaho we will visit the Silverwood theme park, bike the Hiawatha rail trail, water ski on lake coeur d' alene, and hike at the state park north of silverwood.

   I say this all the time but it's true. People hear the word cancer and do one of two things. They either put on the gloves and fight or they start digging a hole. I hate digging.
The problem with cancer is that it wears you down until there is no fight left. Sooner or later patients tire of the constant erosion. I see it all the time in the infusion room. They were all fighters at one time. Some are just ready for it to end.
Someday maybe those eyes will be my own but for now there is still a lot of fight left in the dog. On to the next adventure.

The infusion room

I have always hated this room. People here stare through empty eyes. The last time I was here My friend Bud was still alive.  I miss him. My nurse is nice. She talks a lot. My thoughts are lost in the chatter. A guy beside me still has his hair. It must be his first time. I was wrong. He has CLL. The I.V. feels like ice in my veins today.  I have band practice today.  I can't wait for the rain to stop falling so I can get out of here.

If you add all the days together I only think about cancer a couple of weeks per year. I only have cancer when I am here.

Sadness

I hope as I write that I find the title for this entry. Yesterday was our wedding anniversary. It was a wonderful day that was overshadowed by sadness,  My wife is an O.B. nurse at a local women's clinic. Last year Kaiser Permanente notified the local private clinics that they were cancelling all contracts with them. What this meant for my wife's clinic was a loss of 40% of their patients. At the time the notice was served, there were four baby doctors in the clinic.One of the doctors realized right away that the clinic could no longer sustain 4 physicians and moved his practice back east somewhere. A few months later the writing was on the wall. The clinic would not survive. This clinic was opened in 1924 by the great grandfather of one of the Doctors currently on staff at the clinic and three generations of that family had delivered babies in our community out of that clinic. If this is hard to follow I am sorry. It would be much easier to name names but for the sake of the family I feel I must keep them anonymous. A month or so ago the 2nd doctor from the clinic retired. Another o.b.doctor to take his place could not be found and with only 2 physicians on staff the clinic could no longer stay open. Last Friday, the third doctor, the great grandson of the founding father so to speak took his own life. Rumor has it he never told his father that the clinic was closing. He left behind a wife and 2 daughters in collage. Tears flow as think of the pain all who knew him are now forced to endure. He was loved by his family, his staff, and his patients. He delivered thousands of babies in his 40 years of practice.
   What the hell is this world coming to. What gives big profitable cooperation s the right to come to town and destroy lives. The above mentioned Doctor even applied at Kaiser Permanente and they would not hire him. Cooperate America is not God. The bottom line is not all that matters. Every day decisions are made for all the wrong reasons. When did things get so screwed up? What happened to doing things to make people's lives better? Does anybody do anything without asking what is in it for me? I hear a lot these days about paying it forward and random acts of kindness but those phrases do not apply to the .5% They only apply to the pawns of the world.
    How dare a Man who was so loved by so many commit such a stupid selfish act and cause so much pain.

Who am I to judge..... 8 years ago I was the one who tried to end his life. I get it. I understand better than most I suppose. I can barely read the words I am typing through the tears and I ask myself why. I barely knew the man. I only met him a couple of times.
    I tried to save the clinic. The committee I sit on within my ;labor union met with officials from Kaiser to try and get them to reconsider. They were really nice to us but there was no way they were going to change their minds. I am so angry.
   Today I must go to the Kaiser oncology infusion room and get my bone strengthening infusion.

I Get it. I understand. When I go to Kaiser, no matter what for, I pay $25.00........ A $40,000.00 Provenge treatment cost me $25.00 A surgery cost me $25.00. No matter what prescription I need it costs me $25.00 and all cancer meds are free.


I could go to the local mom and pop furniture and electronics store and buy myself a new t.v. or I could go to Walmart and get the same t.v. for a couple hundred bucks less. We get what we pay for. Everything around us is changing and we are the reason for it. Obamacare will soon be fully enacted and I predict we will see more and more of this kind of thing happening. I was one who thought it was a good idea. I am no longer so sure of that. Lets face it. We get what we pay for. Good aint cheap and cheap aint good. Sure it will provide healthcare for a ton of people who didn't have it before but who is going to pay for it.
  I am done writing for the day. I still don't have a title. I think I will call this post sadness. Todd

Seven years

On Thursday June 6th I achieved a milestone without realizing it until just this morning. As of last Thursday it has been 7 years since diagnosis. It amazes me how quickly time has passed. I will turn 50 this year. I don't know how it happened. I may invite the doctors who told me I would be dead 6 years ago to the party.
   I see my Oncologist on Monday and get an infusion that helps keep my bones strong the same day. So far he is the only Kaiser Oncology Doctor I have not fired. He is a good one. I will present some of trial data presented at A.S.C.O. regarding a Provenge booster dose and see if I can get him on board with it. I believe he is there already but he needs to get the oncology board at k.p. on board as well. I get so tired of things always being about money. If I was independently wealthy I would just have a doctor prescribe it and be done with it. It doesn't work that way in the blue collar world in which I live. Last year my bride and I were facing a rising p.s.a. and evergrowing symptoms of disease progression and we were told that I was too young for Provenge to be effective. I was also told I was excluded because of lung metastasis. It was all a bunch of crap. In a heated argument with my former oncologist he flat out told me it was a waste of resources. (Translation,  Provenge costs too much)  I have not spoken to him since that day except to send him an email after my third infusion. It was to the point but childish. It read as follows. Nah Nah NahNah Nah.
  I honestly don't understand how anyone could say Provenge costs too much. Is it really that much cheaper to pump a cancer patient full of poison every three weeks. Chemo will always be an option but to me it will be a drug of last resort.
   I will pray each day for a cure. I doubt it will happen. Why cure something for a one time fee that you can treat for years and years keeping the profits flowing.
   What is the value of life? Is there a Kelly Blue Book somewhere that sets the value of a human life?
 
   I wish I didn't feel this way. I wish I believed that a cure for cancer was coming.

I don't.

The People of Dendreon

In the last year I have been so fortunate to meet and bond with many of the wonderful people at Dendreon. For those who do not know Dendreon, they are the makers of Provenge, the first of it's kind, Prostate cancer vaccine. A year ago June 1st I received the last of my 3 Provenge infusions and at that time I thought I was done with folk from Dendreon. I was wrong. Last December a bunch of them invaded our home for 9 hours and made us all feel like movie stars. What an amazing and wonderful experience. I have had the privilege of traveling to both of the Provenge manufacturing facilities as well as attending a cooperate function in Florida. Each person I have met has a story of why they do what they do. They do it because they actually care. They have watched family members and friends lose the battle. They believe in the work they do and they get up each day because they desire to make a difference in the lives of the men who are fighting this disease. Were it prudent to name names I would do so in a heartbeat. Each man and woman deserves recognition for the work they do. Are they making a difference? I would have to say yes they are! I say a collective thank you to all of them. I know that many people say it doesn't work or it is not worth the cost. To that I say baloney. Guy's, do not believe the nay sayer's. I feel amazing. I am healthy and living my life out loud. If you are hormone refractory and have metastasis you should demand Provenge 1st. Demand it before zytiga and xtandy and definitely before chemo. This drug is the real deal. Well I am off to band rehearsal. We are playing the 4th of July celebration and headlining the show. Todd

I love my life!!!

What an amazing weekend. The sun finally came out and allowed us to take off our sweatshirts. Mandy and I took the opportunity to walk to the river. The south Toutle river is a true wild river. It also is a very pretty river. Every time we walk along it's banks we see wildlife. We routinely see otter, beaver, deer and other animals. Saturday I found a pocket knife sitting  close to these alder trees. I took it to mean that carving our initials into one of them was meant to be.



Later that same day a good friend of ours called from the A.S.C.O. conference in Chicago to let me know that I am famous. As he was walking through the exhibits he found this Provenge brochure with my picture on it. I guess I really am the face of Provenge. Our friend at Dendreon was so funny when she said "you told me you always wanted to be famous" All in all it has been a wonderful few days. I always feel better when the sun comes out. The grey sky's get  me down and make me feel like hibernating all winter and spring. We might even think about moving somewhere where the sun shines all the time but the truth is, this is home. It has always been home. I have lived in other places and I have visited many places but I get soooo home sick when I am away. Florida was great. We didn't like Washington D.C. I really liked Atlanta too but Dorothy said it best. There is no place like home.
    The sun is out right now and will be for at least the next week. I think sitting at the computer is way over rated.
    Oh by the way.... about the cancer. I dropped the cassodex 5 days ago and I feel really good. Other than that I have no new information. Next Monday I go in to get an infusion of bone medicine. It seems that 7 years on Lupron has had a slightly adverse affect on my bones. I will also see my doctor then. Go outside people. Love your partner in this crazy life whoever he or she may be. Ride a bike. Go for a hike. Life was not meant to be spent looking at a 21 inch screen. Todd