Sadness

Once again, it has been a long time since I have had motivation to write. Today my blog is therapy. 

   When I was in fifth grade I picked a fight with a bigger kid. I thought I was tough but I was just a scrawny, mouthy, little brat. I took several shots to the face before I realized I had made a huge mistake.  The kid I picked a fight with was a head taller, had a longer reach and outweighed me by 30 pounds. I, being the quick thinker that I am opted for diplomacy and backed away. I took two steps back and felt a sting across my behind. I turned to see my dad standing there, belt in hand, telling me to get in there and fight. I endured an ass kicking I would never forget. I was humiliated beyond words but I learned a lesson that has lasted a lifetime. It is my dads words that carried me through the battle I have fought for the last nine plus years. It is my dads words that I repeated back to him as he faced his own battle just a few short months ago. "Get in there and fight" You gotta fight dad. 

  Dad did not pick a fight but he was facing a bully that was far bigger and badder than anything he had ever faced and he did not have a chance at winning.

He was beaten before his battle began. 

   I always felt I was a disappointment in my dads eyes. Mom always said Dad did not want to bring me home. When I was born my leg was hung up on a rib and I had to be pulled out with forceps. I was purple and bruised and my head was deformed. Mom always said I was the original cone head. I was scrawny and had severe adhd. My first year in school I was diagnosed with peditmal epilepsy. It seemed I was the problem child fresh out the gate.

   My dad was a 6' 1" 225lb line backer in HighSchool and played varsity basketball as well. I topped out at a meager 5'7". My freshman year I had yet to break the

5' barrier and I barely weighed 100lbs. Saying athletics were not my forte' was a huge understatement. I was the runt of the litter. All through my freshman year I endured beating after beating until one day I had had enough. 

   During a week of in house suspension for a fight I had not picked there was a knock at the door. It was some other upper classman and his buddies. I was being told through the door that I was going to get my ass kicked after school. I had had enough. I told the kid to meet me off of school property. I made him wish he hadn't. I am often reminded of the Kenny Rogers song, "Coward of the

County" I beat the kid beyond recognition. I week later I was confronted by a jock in the locker room. Without thinking I turned and landed five or six punches to his face before he even knew what hit him. That was the last fight anyone ever picked with me. I would have 2 more fist fights after high school. In both of them I faced bigger men who had e couple beers and we're looking for a smaller person to beat on. The first spent the next six months with his jaw wired together. The second spent the night in the emergency room withe a fractured cheek bone and a broken nose. I would have felt bad had he not been hitting a girl before I interjected. I still feel a little guilty for ramming his face into a trailer hitch but he had it coming. I had been served divorce papers earlier that day and he picked a fight with the wrong guy.

   I never thought about fighting cancer, I just fought. I was convinced in many ways I would take the fight a full 15 rounds. I believe God was standing in my corner. I was like Rocky facing Apollo Ceeed and I had Mick yelling in my face to get in there and fight.

   Dad passed 3 weeks ago. At the end, he weighed 150 lbs. He was no longer lucid. He couldn't speak. The truth is, he was gone weeks before. One evening before he went away, I layed on his bed and told him he was my hero. I told him how proud I was to be his son. I told him how much I loved him. It was just the 2 of us. 3 weeks later he was gone. I miss him. I miss him wanting to talk politics every time I saw him. I miss playing music with him. We will never go fishing or hunting again. We will never again share a stage together.

   Dad is gone. I will do my best to carry his spirit with me and to bring honor to his name. Today I am smoking salmon. It was always dad who smoked the salmon for Christmas Eve. I brought home his smoker last night and brined the last fish he ever caught. Tears are falling and I am smiling. I love you dad. I miss you. I will always be proud of who I am because you made me this way. I am sorry for the times I know I let you down but I am still standing. Thank you for all you did for me. Thank you for teaching me to stand strong and not back down. Rest in peace. Forever love, your son, Todd

Left to right:

My best friend and best man Tony, My brother and best friend, Jason. I am in the middle. My hero, my friend, and my father, Jay. My best friend and high school buddy Larry. Bairdcreek Rockin' Country.

   

  

Losing my dad

    Dad is dying. I am sitting in a hallway at OHSU awaiting the removal of the esophageal stent we had hoped would allow him to eat. It  was a failure. The stent slipped below the tumor and rested against the wall of his stomach. He cannot eat. It has been 10 weeks since his diagnosis. He has had no treatment other than an incomplete round of chemotherapy. Insurance has not allowed him to come to OHSU until now. The doctors at the local hospital seem content to let him die. They speak of pain relief and hospice. They speak of quality of life and how the cancer cannot be cured. Duh!! We know that. We know he cannot defeat the beast. The tumor is aggressive and angry. We are treated like we are stupid. Dad will die but not today and not without a fight.
   Chemotherapy and radiarion can give him weeks. It may even give him months but nothing has been done. I am reminded of the time Kaiser Permanente told me that giving me Provenge was a waste of resources. Is that what we have come to as a society? My perception is that the medical community has lost its faith and its compassion. Death panels have become a reality. Insurance companies make decisions who to treat and what medications to treat them with.
   My dad is 73 years old and just a few months ago he was on the Columbia river in his boat salmon fishing with my mom. Looking at dad now I can see why the doctors are reluctant to try but they are wrong. If they were only ingesting 500 calories a day they would look just as fragile as my dad does. They would be too weak for chemo as well. Dad needs nourishment, hydration , and treatment.
   The Doctors at OHSU seem to feel he is stong enough for treatment. They have not lost hope but unfortunately he has to go home and his fate will be in the hands of doctors who are forced to answer to some bean counter working for united healthcare.
   Dad is dying. Just like everybody else. What is it that makes his life less valuable. I am angry. My frustration is all consuming and I have taken it out on those who I love the most. There are two local doctors who have come close to a punch in the nose.
   His stent was removed successfully.  The surgeon believes that the initial Chemo shrunk the tumor and caused the stent to slip. I hope we can get the local doctors to jump on board. The surgeon believes he can now eat. If he can eat he can get stronger. If he is strong he can fight. My dad is a fighter. I learned from him.

A Greater Good

    A greater good.

   In 2007 President Barack Obama won a landslide election. Running on slogans promoting hope and change, he misled the American people into believing that a politician could make a difference. Change rarely occurs in Washington. True change only occurs when the men and women of our great nation stand as "One".

  Today within our community the men and women of local 153 stand as One. Together they risk everything in hope of change that we truly can believe in. This change is not borne in our Nations Capital but rather in the Heart of our Nation. The first sentence of the Constitution does not begin with "We The Corporation", it begins with "We the People"!

  Each Generation leaves behind a legacy. My parents and grandparents generation fought for a 40 hour work week, child labor laws, benefits, overtime pay, and the right to organize and bargain for the better of all Americans. They created the Middle class and gave rise to the American Dream. Upon the backs of labor our great nation was built. 

  Today the American dream is under attack. Today, poverty is on the rise. Today the richest one percent of Americans control 99% of the wealth of our nation and yet it is still not enough. Corporate greed will never be sated. 

  Today as a community we must make a choice. Will we stand as One and say enough. Will we support the Striking Kapstone employees or will the Legacy of this generation be the death of the middle class. Think about that when you choose to board that bus for a job that someone else earned. Think about that as you cross the picket line and turn your back on the men and women who are fighting for us all. In closing I leave you with the words of John F Kennedy: 

Sharing my heart

This post is for me. It is not about Prostate cancer. It is not about treatments. Cancer can wait. My heart is sick. I have never known such pain. I am writing this entry because I don't know what else to do. My dad is going to die. Each day it becomes more apparent.
  My dad is the man of steel. He is my hero. Everything I ever learned I learned from him. There was nothing he couldn't do once he set his mind to do it. He use to carry me to bed on his shoulders. I thought he was the strongest man in the world. He tought me to hunt and fish. He taught me to ride a bike. He and mom always knew what to get a 12 year old boy for christmas and birthdays. He bought me my first guitar. He introduced me to Waylon Jennings, Buddy Holly, Johnny Cash, and Merle Haggard. He gave me my first b.b. gun, bow, and hunting knife. He taught me to respect my mom. He took off his belt and tanned my hide when I needed it. He showed me it was okay for a man to cry. He taught me to fight for what you believe in. He was strong enough to watch me fall when I messed up my life. He was there to to help me up when the prodigal son came home. He taught me to water-ski. He taught me to build. He taught me how to work on cars, do plumbing, and electrical. He taught me how to say I am sorry and to swallow my pride when I was wrong. He taught me that a man may not like going to work every day but a man supported his family. He worked at a place he hated for 39 years and 11 months. I asked him the day he retired at age 58 why he didnt stay 40 years to get bis gold watch. He said they could keep their frigging watch. Fibre was in the rear view and he didn't  need  a watch on his wrist to remind him of it. Now it appears he has one lesson left to teach me and I am not ready to learn it.
   Dad is 73. He and my mom have been married for 53 years. It wasn't always a bed of roses but their love is eternal. They knew that marriage was a hard road but quitting was never an option. For better or worse meant something. I heard my dad say the F-word one time. It sounded out of place. Dad is too young for this. He is a young vibrant 73 and seeing him like this is breaking my heart. If there was one consolation to having advanced prostate cancer it was knowing I would never lose my parents. I am glad that they won't have to lose a son to cancer or watch me die. I am learning just how hard it is to lose someone you love. We lost gramma and grampa but they were really old and it was hard but not lime this.
  I am holding on by a thread. I have to. My mom needs me. She is as tough as a barnyard rooster but the cracks in her armour are starting to show. Her heart is breaking. I feel helpless and weak.
   I still have hope that treatment will help but they have not started any treatment yet. He spent last night in the hospital with severe pain. He appears broken and small. He looks defeated. It is a difficult thing to witness. If you read my blog and believe in God and our lord Jesus, please pray for my mom and dad. Thank you for reading. Todd

A time of peace

  I awoke this morning intent on writing. It took 15 minutes to choose a title. I threw my phone on the couch in disgust. I wanted to write but had nothing. It was easy to write when life was a whirlwind. There was always something happening or Cancer news to report. My life has become incredibly normal. That thought opened my heart. I have been on this road for a very long time. The road has seen many battles. There are many to come. For now, there is peace.

   Wednesday last, Mandy, our daughter, her boyfriend, and I were drifting an Riffe lake about a half mile upstream of the dam. As the boat moved gently with the breeze and Otis Redding sang "Dock of the Bay" the peace was shattered by a pair EA18G Growlers doing a practice bombing run on the dam. They were a mere 300 feet directly above us. It was awesome. The roar of the turbines shattered the silence and echoed across the mountains. Moments later they pulled up in a near verticle climb and were gone. Once again peace returned.

   My most recent PSA is still undetectable. Each morning and evening I take my pills. I am not due for infusions or Lupron for 2 months. For now the beast is quiet. I am adrift upon a still sea and being pushed along gently by the winds of life. I rarely think about cancer. It is there. In the dark recesses of my mind. I know that at any time the peace can be shattered by the roar of the beast. 

  The next day we took our cameras out on the lake and waited for the jets to return. I wanted to record a video of me skiing with the planes flying over. It was a two hour waste of time. The planes did not return that day. We drank a few Coronas so it was not a total waste of time. In this story lies the epiphany.

  In regards to stage 4 Pca, recurrence is inevitable. The beast will return. Remission is temporary. Life goes on. In the mean time how we choose to live is paramount to our overall survival. 

   My dad has been diagnosed recently with stage 4 cancer of the esophagus. It is a devastating diagnosis. Still, he may have several years and yet he seems to have lost the will to survive. There is no fire. There is no fight. He appears small and defeated. It is unsettling. My dad is the man of steel. He is my hero. I have never seen him like this. I hate cancer.

   I have a disease. It most likely will cause my flesh to die one day. It cannot harm my spirit unless I allow it to do so. It is powerless. I will not allow it to define how I live my life. I will not waste this gift waiting for peace to be shattered by the roar of death. That aspect is for those who do not yet realize they are terminal. One day they will come face to face with the reality that life on earth for them is over. They will look back on their lives and regret the wasted year. 

  We, we lucky few, have been given the gift of mortality. How we spend our months and years between now and the grave define our character. Time is truly a precious gift. Choose wisely how you use it.

   

  

    

  

Good morning

    

  Once again it has been a long time since I have written. I think the clock is spinning faster and faster every day. It's not that I am unable to write. When I sit down the words flow. I just haven't sat down. Maybe that is a good thing. I find that I am less and less focussed on the aspects of cancers affect on my life. There have been a few hiccups. My testosterone starved brain continues to be foggy. Monday last I could not remember if I took my medication 5 minutes after taking it and took it again. I felt funky the entire day after that one. Mandy said I need to get one of those plastic pill organizers so I won't forget. I hope it hasn't come to that yet. I am far too young to be turning into my grandfather. I am 2 weeks late for my Lupron shot.and still haven't found the motivation to go to the doctor. 

My oncologist ordered a bone density scan and when they called to schedule it I blew off returning the call. I am suppose to have an infusion of Zometa and I have not scheduled that either. Today is Thursday July, 9th. I am on vacation. Cancer can wait.

   We spent the past 6 days at our favorite lake with family and friends. It was so much fun. I attached my Go-Pro to the front of my ski. 

It was a unique perspective to say the least. I was skiing like a madman. I was as fearless as a 16 year old kid. The long hot summer has warmed the mountain lakes to a comfortable 74 degrees. Being in the water feels so good that wiping out is not an issue. Mandy thought I was going to wreck myself and she was correct. I hurt so good.

  We discovered a new game we call pirate tubing. I have never laughed so hard in my life. It is a game much like king of the hill only on the water and traveling at 20 mph.

We are all bruised and exhausted but it was so much fun that nobody really cared about the minor aches the next day.

My granddaughters came home from Florida and spent the weekend with us. Madison just turned 5 and insisted on holding the orange flag. She did a great job.

   It was an awesome 4th of July vacation. We are home now. Mandy returned to work yesterday. I am still in my pj's and robe. I still have 4 days left. I think I need it to recover. I just walked out to the garage and looked at the boat. It is suppose to be 90+ degrees today. We might have to go back up to the lake. 

Looking to the future

 The future!. If you have been told there isn't one then it is not something you spend a lot of time thinking about. I remember when I was told I only had a year left. Saving for retirement didn't seem to make too much sense. I stopped contributing to my 401k and in fact, I withdrew everything that was in there to buy a home for Mandy and I.  

   After 9 years dealing with this disease it appears that I have a future. Lately I have begun to wonder what that future is going to look like. I am on the cutting edge in terms of how this disease is treated. Many of the drugs I am taking have not been around long enough to have statistics regarding their long term use. I worry that one day my liver will die or my bones will begin to shatter. 

  I have no choice but to ride it out and hope for the best.  

I am still learning

   Bicycling last night along a country road Mandy and I were approaching a guy walking the same direction as we were and on the same shoulder of the road. As we got closer we crossed to the opposite shoulder. The guy looked a little rough around the edges if you know what I mean. Upon arriving at home Mandy discovered she had lost her cell phone. I thought someone had stolen it when we walked into the general store. It turns out that it had fallen out of the pocket of her saddle bag along the road somewhere between the store and home. She took our daughter and drove the route we biked but was unable to find it. A few minutes later our home telephone rang. The gentleman on the other end said he had found a phone on the road. I drove to his location and the guy gave me the phone. It was the guy we had passed on the road. The guy I didn't want to ride close to. The guy I had judged as a tweeker or what have you. The guy I avoided was the guy that took the trouble to look in the directory for an emergency contact number to return the phone to its owner.

   I am a terrible person!!! I thought that I had grown as a human being in my fight against this disease. As it turns out I have a lot of growing left to do. 

  I had decided in advance that I was going to give the caller 20 bucks for being a Good Samaritan. When the guy gave me the phone and I handed him the twenty he was really grateful. When I realized it was the guy walking down the highway I felt like it should have been more. Way more!

  We live in a world where the majority of people judge character by appearances.

The guy on the highway was dirty. He was walking. His clothes looked like they hadn't been washed in days and he was smoking. I judged him based on his appearance as someone to steer clear of. 

   We put athletes and celebrities on pedestals. We admire the wealthy and affluent. Far too often they are not worthy of the adoration we bestow upon them. How many professional athletes do we hear about using drugs, abusing their families, raping women, and even committing murder?  Are celebrities any better? 

   I have learned a lot about myself in the last 9 years. In the last 24 hours I learned that I still have a lot more to learn. A donkey in a 3 piece suit is still a donkey. Likewise, a good man wearing dirty tattered clothing is still a good man. People are people. Some are good some are not. The wrapping paper is not what is important. The Hawaiians say " Mai Iloko Mai" loosely translated it says " that which is within matter"

   One thing about having a terminal illness is that everything you think or do has a sense of urgency. Maybe it's real and maybe it's imagined but the truth is that I may not have as much time to get it right. 

   Change is never easy. It is usually a slow process. I hope the next time I start to judge a person on appearance I will stop and think about yesterday. I hope I will take a second look and remember that I could have been that guy walking down the road. The truth of the matter is that not long ago I was.Todd

To Psa or not to Psa.

   I read a tweet the other day regarding prostate cancer and breast cancer screening. The jest of the tweet was that screening is resulting in over treatment. It states that screening for prostate cancer is no longer recommended. I have a friend. A very good friend I might add. He is a fellow PCa survivor. He is cured. He caught the disease early enough that with a little luck and a great doctor he beat up the disease and stole its lunch money. I have no idea how the disease was discovered but I assume it was a PSA test. My friend is on the side of not screening men for Prostate Cancer. He sides with the opinion of the medical community that too many men are being treated for cancer that would never impact their lives but are now suffering with side affects of unneeded treatment. To be fair, my friend is also on the side that says we need a better test that can determine aggressive cancer from cancer that is slow growing and of the temperament that a man will die with it and not of it. I agree with my friend on that point but we don't have that kind of test yet.

   My friend was diagnosed the same year as I. Although the cancer was advanced it was still localized to the area of the prostate. He did what most people do when they hear the "C" word. He wanted it gone. He had a prostectomy followed by radiation followed by a 3 year stint on hormones. 8 years later he is cured. I am happy for him. He is my brother. He and his family deserve the very best. I disagree with his opinion however.

   I agree that there a many men who have nothing to fear from a prostate cancer diagnosis. I realize that a lot of guys panic over non aggressive G-6 cancer and pull the trigger on surgery when it is not necessary and quite often have problems for years afterward and sometimes permanently. I understand all of that but I simply don't care. Men deserve the right to make a decision about their own health. If a g6 guy decides to have surgery that isn't needed then so be it. It's on him. Not screening most likely won't affect those guys.Not screening affects guys like me. Had my friend not been screened he would be in the same boat as I am.

   I was stage 4 at diagnosis. I was 42 at the time. I may have been diagnosed early enough to be cured if screening had taken place at age 40. 

   What are the facts. Men in the United States stand a 3% chance of dying from PCa. Screening lowers that risk by 20% or to around 2.4%. PSA screening increases the chances of a man eventually facing a prostate cancer diagnosis by 70% or from 10% to roughly 17%. Considering the majority of prostate cancer is slow growing and does not spread, it is easy to see why screening is getting a lot of negative publicity lately. There are way too many men who spend the rest of their lives dealing with incontinence and sexual frustration who might have never known they had prostate cancer until after they passed away of natural causes if they had never been screened. " The needs of the many outweigh the needs of the few"(Spock) 

   More like "the few" fall through the cracks because statistically the majority of prostate cancer is indolent. Here is another fact. 25,000 American men die of prostate cancer each year. 20 years ago the number was more like 50,000

   The choice of being screened should never be decided by a doctor or an insurance company. The decision to be screened should be by the individual. 

People can say what they want but there is one indesputable fact that tends to be overlooked in the debate. Since FDA approval of PSA testing less men are dying from Prostate Cancer.

   I agree that many men are being treated that shouldn't be. I agree that we need a way to determine whether cancer is aggressive or indolent. In fact I agree with many of the talking points that validate the over screening controversy. The problem is we don't have another test. We don't have a way of determining whether or not a man should be treated. We cannot place everyman into a cookie-cutter mold and say this works for everybody. It doesn't work for everybody. 

   Urologists make money doing Prostectomies. Hospitals make money on the surgeries as well. I was never afforded the luxury of options but I wonder what percentage of surgeons recommend watchful waiting upon a diagnosis of prostate cancer.

   We need education. We need empowered men making decisions regarding their health without doctors or insurance companies quibbling over cost vs. risk. Today we have the PSA test and until something better comes along it is an important tool that since 1992 has saved thousands of lives. We don't go back to the days of stage 4 cancer diagnosis being the norm. We don't throw the baby out with the bath water. We don't stop using the only screening mechanism we have until we have something to take its place. I camp firmly in the "To PSA" side of the debate.

Darkness closes in.

   In posts previous I have mentioned that in the early days of diagnosis I spent many sleepless nights wondering what it would feel like to take my last breath. Those thoughts are behind me for the time being but the darkness is always just beyond the light.

   Since I was a small child whenever I was sick I would have the same dream. There was only one part of the dream I have ever been able to remember and that was being inverted. Every other aspect of the dream manifested itself in feelings. There was always a great deal of pressure. There was always the sensation of my entire body rubbing against pumice. It was always dark. I could feel the darkness. The dream was always the same. Each time I had the dream I would awaken with the flu, a bad fever, or some other semi-serious childhood illness. I went many years without having the dream. Just prior to my diagnosis I began having the dream with sudden regularity. After beginning treatment I went five years without having the dream again until my PSA began climbing in late 2011. I have not had the dream since completing Provenge therapy in the spring of 2012.

   I have no idea why I am writing about this or what it means. It just seems strange to me. I have tried, without success, to remember the dream. I never remember anything more than what I mentioned above despite having experienced the dream a few dozen times. 

   I have been told I am remembering my birth. I always found it odd that I would have this dream when I am sick though. What could being born and being sick have in common? Then it occurred to me that I was a forcep baby. My mom told me I was stuck and I had to be pulled out. My head was bruised and so mis-shaped that my dad did not want to take me home. I was the original cone head. This happened before the days of the baby vitals monitor in delivery rooms. I wonder? Could I have been close to death in the deliver room.

   My Grandma and Grampa lived next door when I was young. I visited them daily. One day in particular, I must have bee all of four years old, as I walked across the driveway to grandma's, I stopped in my tracks. I had a question in my head. Who was I before I was me? I may have written about this before. I can't remember. Honestly I just want to write but have no clear topic. This might be fun though. Has anyone else ever had moments like these. 

Some thoughts arose as I wrote.

Sunrise and sunset look a lot alike!

Is dying like being reborn?

Do we have awareness before we are born?

Do we forget the before after we are born into this world?

Will we forget this word in the after?

What if our spirit is like our R.A.M. And our brain is like our hard drive? 

No!!!! I have not been smoking dope!!!!

It's just that I am intrigued by my dreams and memories and even though I was only 4 it was deep and meant something. In fact it may have meant more because of my age at the time. I think we forget all the important stuff as our hard drive fills up with crap. Food for thought. Todd

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Also I publish this blog on Wordpress as well. Livingwithmcrpca.wordpress.com Thank you for reading

   

   

   

Combatting Fear

  I try to write in regards to what I know. That is why there is nothing about surgery or radiation on my blog.  Having said that it occurs to me there are many things I have never written about of which I have plenty of experience. Combating fear is one of those topics.

    I find it odd that in many ways my cancer diagnosis for the most part, set me free of fear and its grip on my life. I don't believe I have ever been a coward but I probably fit the definition of a chronic worrier. There was however a time during diagnosis and several weeks after that I was afraid. 

If you ask me today, "Are you afraid"?, I wouldn't have an answer. I don't know. Maybe. 

   I spent many hours in therapy after I was divorced in 96. My therapist made me peel the onion more times than I care to recall. Back then the issues were hurt and anger. Fear is a little harder but I will try.

   On the surface, I am afraid of pain. Burning I think would be the worst. So in regards to cancer, I know that men suffer terrible pain from metastasis to the bone. I am afraid of the cancer spreading and causing me to be in pain. I am not a fan of pain. i am not a fan of pain medication. Except for maybe morphine. When I die it will be in a morphine induced coma. I am afraid of chemotherapy. I really don't know why but it terrifies me. I don't care if my hair falls out. I like the shape of my melon. I am not afraid to die. I am afraid of the day that I am alive but no longer enjoy it. I am afraid of the day when I will no longer be able to do all of the things I enjoy. I am afraid of being a burden to my wife and kids. I am afraid of what it will do to them to watch me die. I am afraid there is no God. I am afraid there is a God and I won't make the grade. I'm afraid of darkness.

   So....... How do I combat my fears? The short answer is simple. I combat my fears by shining a light. The whole dying thing was simple. It took a while to figure it out but it is pretty much like this. I am terminal but so is everyone and everything on planet earth. We will die. Most people live with with a false sense of immortality. Sure..... They know they will die someday but it will not happen for a long long long time. Knowing I will die is  something I cannot avoid. Making certain I have no regrets when that day comes is all that is within my power. I don't think about the end, I focus on the journey and being the best Person I can be along the way. Everyone dies but not everyone truly lives!

  Pain. I can't get around that one. I can only trust that my doctor will do all that he can to keep me comfortable when that day comes.

   All the aforementioned are certain to happen. I can do nothing to stop them. One day this disease will make life seem not worth living.  One day the ones who love me will watch me take my last breath. One day I will meet God and I hope he smiles. That day could be tomorrow. It could be tonight. It could be a long long time from now. That makes my life no different than anyone else. You see, the light That shines upon my fear is truth and truth is this. All we have is the here and now! There is no tomorrow. Tomorrow is a myth. We live for today. We love for today. We laugh for today. Above all, we use this moment that we have been given to ensure we do not leave this world with regrets.

   I am afraid of darkness. In my fear I reach for the light. Todd

   

 

You're sick. You're not dead

   My favorite movie of all time!  "Remember the Titans" has many lines that I enjoy quoting. One quote in particular I tweeked to fit the title of this post. 

   In the movie, Gary, the team co-captain, has become paralyzed from the waist down in an auto accident while celebrating the win that has placed the team into the State Championships. As his coach is trying to comfort him Gary says, "coach, I'm hurt I'm not dead"

   I have said it before and I will continue to say it as long as I have breath. "People do 1 of 2 things when they hear the word cancer. They put on the gloves or they pick up a shovel."

   I know cancer sucks. I know that to a man, losing libido and most ability to become aroused, seems like the loss of masculinity. Most cancer treatments take their toll as well. We suffer from fatigue, weight gain, depression, and a host of other side effects. Hot flashes are the worst but they have made me more empathetic toward my mother. Cancer is a raw deal. I get it. I live it daily. Boo hoo!! Have a good cry and get over it. Yeah that's right. Man up and grow a pair. You're sick.... You're not dead!!! 

  Those who know me best know what I went through prior to diagnosis. Two failed marriages, losing everything to drug addiction, and a failed suicide attempt, in many ways prepared me for what was coming. When I was told I would die, I already knew I wanted to live. Still, had I not recently started dating a very active and out going woman, I may have sat around feeling sorry for myself as well.

Mandy was not about to let that happen. In the beginning there was no way I wanted to be active. The truth is, it started with a simple walk. It started with a single bike ride. It started the day Mandy bought me a kayak. 

   My life began the day i thought it might end. Not because of what I did but rather in spite of it. Yes I threw fear aside the day I stepped off that bridge and plunged 60 feet into the river but Mandy was the person who insisted I get off my butt in the first place 

   There is a book out there titled "Cancer as a turning point" it goes into much more detail about this subject than my blog ever will but the point is this. You may die of cancer but your not dead yet. Are you willing to waste the time you have left sitting around having a pity party? 

   Last weekend I met a 32 year old with a toddler who is fighting stage 4 breast cancer. She is also a patient advocate and blogger. IMO she has every right to feel sorry for herself but she doesn't. I met a woman in her early 30's who has had a double hip replacement and is a triathlete. I met guys with H.I.V. Who are out there working every day for others. 

   P.Ca. Is no picnic. I know that. Late stage is worse. It can be frustrating and humiliating. It can steal what most guys consider their masculinity but to quote a friend of mine. Masculinity is between the ears and not between the legs. Most men with PCa struggle with inconvenience and that's it. Some men do have it rough and they get a free pass but for those who are simply struggling with ED and incontinence it is really time to get off the couch, grab life by the horns, and show the world what it really means to be a man.....Todd

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Sometimes I Forget

Greetings,

As most of you know I have struggled to write as of late. I don't think that will be a problem for a while. Recently, there have been a few things happen that have re-inspired me. 

    When I was first diagnosed I remember spending many sleepless nights on the computer looking for any information that might give me hope. I was fortunate to find a website where a very caring group of men and women helped me through those very dark and trying times. Many times lately I have written and said in regards to cancer that " I have very little to offer. " An email a few weeks ago changed all of that.

    People who don't write on a regular basis can't possibly understand how hard it can be. We bloggers invest a lot of time and effort and sometimes it feels like it doesn't matter if we do it at all. That is where I got it wrong. It does matter. 

I have been in such a good place for so long now that I forgot what it was like to be afraid of the future. I forgot how it feels when numbers say you are not doing well. I forgot what it feels like to have a guy who has been fighting the beast for 9 years tell you to relax..... Everything is going to be alright!

  The person who wrote me the email knows who she is. Thank you. I needed to hear you. I saved the email to file. I cannot read it without tears filling my eyes. Last week I was at the Health E Voices conference sponsored by Janssen. Janssen paid for my travel and hotel expenses as well as meals while I attended the conference. There were sixty or so bloggers and online advocates there representing a spectrum of chronic disease. I felt i in-adequate in their presence. I write a blog. Some of them have literally started foundations and support groups. They are doing awesome things. By the end of the conference I felt renewed and ready to get back to work. 

   Today I got my P. S.A. results back. I have now been at undetectable levels for over a year now. I have been on Zytiga for 20 months and 12 of them I have been a zero. 

  Those of you who read my blog..... Thank you. Those of you who follow my blog...... I thank you as well. Those of you who comment and email me..... Many many thanks. You keep me going. Mahalo. Todd

Live from New York

Today I am in the presence of 60 amazing empathetic human beings. It is such an honor to be among them. They all seem connect by a common bond. I feel like an outsider. I must do better

The renewal

   The ocean stretched to the eastern horizon. Mandy and I stood alone atop a cliff awaiting the sunrise. Today is our last day of vacation. Our time in paradise is almost over. I am sad but the trip has been amazing. 

The highlight of our trip came on Friday. A good friend I had never met until this week treated us to a seven hour catamaran trip up the Nepali coast and out to the forbidden Island Niihau for a once in a lifetime snorkeling adventure. On our 7 hour 100 mile adventure we saw humpback whales, schools of spinner Dolphins, sea turtles, monk seals, and a million fish of all sizes and colors. We were able to share the day with Mandy's cousin and her boyfriend who she had not seen in 25 years. At the end of the day when I downloaded my gopro pictures and video, I was pleasantly surprised to find I had captured the sound of the whales singing. It was a wonderful day. It was a wonderful vacation shared with family and friends. Threwout the week we hiked and swam and explored. We watched sun rises and sun sets and had our fair share of Mai tai's. On our last day we rented surf boards and spent 6 hours trying to catch a few waves. We spent that evening applying aloe to our sunburned skin.

The sun has set on our last day in paradise. I do not wish to go home but We are leaving the islands refreshed and renewed. We are already planning our next trip to Hawaii. This time perhaps we will visit the big Island. I am a firm believer that Hawaii is truly, GFMPH.

Day 5

I awoke to the warm trade winds and the aroma of tropical flowers and freshly mowed grass. Mandy was awake and drinking coffee on the lanai. It is day 5 of our first ever trip to the Aloha State. Today like each day before were awakened by the groundskeeper mowing the green outside our door. Between the mowing and the chickens, sleeping in is impossible. I dont mind. I love this place. I don't want to miss a moment of our time here. 

I never desired to visit Hawaii. This trip was for Mandy and Michaela. In my ignorance I touted the virtues of the Caribbean. I was mistaken. Hawaii is paradise. Stepping off of plane I could feel he difference. It is hard to explain but even mixed with the overpowing fumes of jet fuel, the air smelled happy. As we left Lihue heading south toward Poipu, layer after layer stress began to melt away, There is something about driving 35 miles an hour through tropical mountains and along pristine coastlines that can do that.

Another turn in the road

 Today is my last day as a journeyman pipefitter. It's 530 in the morning. I got up early so I could stop at the local bakery to buy three dozen donuts to take in for my crew. My apprenticeship began nine years ago. Two short months later I receive my diagnosis.  At the time no one believed I would even finish the four years it would take to become journeyman but here I am nine years later. Monday morning I will begin a two year apprenticeship to become a machine lube tech1. Through the durationof this  program I will retain my current salary. Upon completion of this 2 year apprenticeship will receive a substantial raise in pay that I keep even if I choose to return to my previous trade. 

   Last night I received an email from the bargaining board. Apparently through nine months of negotiations we have finally reached a tentative agreement.  Although I have not seen the offer I am certain the board would not notify us if they were bringing back a sub-standard contract for us to vote on.

   Yesterday my "93' Nissan go to work truck" informed me that the 285000+ miles of abuse were too much. I drove it to work today. I hope I make it home without a tow truck.

    I spoke to a friend on the phone the other day.I told him that "I just don't know what is wrong with me lately"! I haven't posted anything on healingwell.com. My last blog post was 6 weeks ago. I just haven't thought much about cancer in a while. He told me life has become normal.

   I could write every day about work, high school athletics, and small town life but in regards to cancer,

 I got nothing.  

   After 9 years of this disease dealing with the aspects of cancer has become normal. I am no longer consumed by it.

Life has become so full that there is no longer room for cancer. I know that for many men this is not the case. I wish that it was. I wish every man who has this disease could share in my blessing. 

   I know that one day the beast will awaken. For now it sleeps. I have won this battle. There will be others. I am not afraid. Today I am cancer free. I wear my scars as a badge of honor. They have shaped me. They do not define me. The beast took a lot from me but not the best of me. Monday I begin a new apprenticeship. As I set upon a new path it is different then last time. I believe I will be alive to see it through.

   We leave for Hawaii in a week. I am ready to get away. I look forward to seeing Mandy smile as she swims with the fish. I will write more soon. Todd

10 months and nothing has changed

   Ten months at zero. Yesterday I recieved a 2 month PSA result. My numbers have been undetectable since last April. 

   Common knowledge to my readers, it has been almost three years since I completed provenge therapy and 21 months since starting Zytiga. 

  I started zytiga in August of 2013. My PSA had risen to over 30 and I was just a little nervous about watching it rise. I could've waited. There was nothing to speak of on my scans that would warrant alarm but I am just not wired in ways that would allow me to watch the numbers rise and do nothing about it. 

   A month after starting Zytiga my numbers had dropped by 40%. It was a trend that would continue each and every month thereafter until my psa level was no longer measurable. My side effects were mild. I had slight nausea for the first couple of months but after that it diminished. I also had a slight increase in number and severity of hot flashes. They have not diminished but after 9 years of hormones I would not know what to do without them. My liver function appears to be normal. All of my blood tests remain dead center of tolerance. My oncology doctor expected Zytiga to last a year. It has been 21 months. Although he expects it to stop working any day, I intend to take this drug the distance. Provenge has my immune system tuned up and doing its part and I believe it is helping the Zytiga to work better.

   When I was diagnosed the only treatments available to me were first line hormone therapy and chemotherapy. I was diagnosed in an age where there have been great advances in the war on prostate cancer. Three days ago I had my blood drawn for a PSA test. I am fortunate that my results usually come back the same day as my draw. They post the results online so my post draw wait time is a matter of hours, not days. It is a good thing because after my blood draw my mind begins to play games with me. The question I always ask myself is " if my levels are up, then what comes next?". I asked this question to a group of friends and was in awe of the many drugs for PCa that are both available or in trial. Many of the trial drugs have been fast tracked. It appears I have an endless sea of option available to me if Zytiga fails.

   We live in an age of promise and hope. We live in an age that could quite possibly see the end of cancer. We also live in an age where the connection to our friends and family is on a 3 inch screen. It is a strange and amazing world in which we live. I am happy I know who is in control. Todd

West coast winter blues

    First of all, I would like to point out that I am not a global warming nut.  After saying that, I would like to add, that things are changing. People on the East Coast would probably be thrilled with the winter that we've had in Southwest Washington. It has been unusually mild. The mountain snowpack is the worst I have ever seen it. There is literally grass growing underneath the skilifts. Our snowmobiles have sat idle in the garage for over year now. Our snowboards hang on the wall. Mandy and I have gone snowshoeing twice this year. Both times were in November and truthfully we didn't need snowshoes as the snow was only about 6 inches deep. State hydrologists are forecasting low river levels this summer. They are not saying yet that we are in drought like conditions as we are getting plenty of precipitation it is simply falling as rain. During the hot summer months there will be no snowpack to keep the rivers flowing. Each night when I let the dog out to do his business the woods and wetlands surrounding our home are filled with the chorus of a myriad of frogs. Frogs in February. It doesn't seem possible. The Canadian geese have returned. There are nesting pairs everywhere around the lake. We have quite literally had only one week this winter of temperatures below freezing. Our home is near a lake and is surrounded by wetlands. The unusually warm winter means a really bad year for mosquitoes, fleas, hornets, and wasps. We had another winter like this back in the mid-80s. It's a cycle. Next year we will probably have record snowfall. Until then I guess we will just have to be content with warm weather outdoor sports.

I read an article yesterday saying that government is toying with the idea of cooling the planet by spraying sulphur pollution into the upper atmosphere. When will people realize that we are not in control. We tend to screw up everything we touch. I think we can all learn from the theme song of the Disney movie "Frozen" "Let it Go"

The games people play

Three years ago this May I recieved Provenge after fighting for it for six months. Why did I have to fight for it in the first place? I had to fight for it due to an article in the JNCI stating it was compared to a flawed placebo and wouldn't work. I often wonder how many men didn't get it because they wouldn't fight for it like I did. Three years later it seems nothing has changed. There are still people out there that want to see Provenge go away. Dendreon is being sold off to the highest bidder and people are happy about this. Wtf. I can only see one reason for this. It has to be that there are people out there who are going to make a ton of money. How sad. How much money is enough. What kind of people would dare profit by taking away hope from those who have none. I have written about this before but a recent comment about my last blog post( not on my blog) has peaked my ire. It seems today that the market is the almighty. I am so sick of it. . This post will be short but sweet. I needed to rant a little bit. 

Resiliency A.K.A Overcoming Adversity

    Flight 3493 Santa Barbara to Portland. 38,0000 ft. over San Francisco. I am missing my friends. This disease took a lot from me but it has given back more than it ever took away. It's greatest gift is the friendships we have made along the way. Every place we have traveled we have made friendships that will last a life time.

    It has been a long time since I have written. I'm afraid I haven't been inspired.  It takes time to write and lately time has been a precious commodity. Work takes up a great deal of my time and with an unresolved labor dispute hanging over our heads I am afraid my mind has been distracted.

   Dendreon invited me back to share my story with them last week. They flew Mandy and I down to Santa Barbara for a few days and once again treated us like we were rock stars. It is common knowledge that the company is in transition. The company I work for was recently acquired so I know what they are going through. They said they were just happy that no matter what happens, Provenge would still be available.

   Mandy and I arrived late Tuesday evening in Santa Barbara. We said hi to a couple of people got some food sent to our room and went to bed. I had been up since 4 am so I don't remember my head hitting the pillow. I awoke at 6:00 a.m. dressed, and made my way to the ballroom where the meetings were being held. We did a short rehearsal before sneaking out the back door. Us being there was suppose to be a surprise. They didn't want anybody to see me who might recognize me.

    Last June, the Dendreon folks came to our home to film another video as a follow up to the ones they shot 2 years previous. At the end of that video I sang a Tom Petty song using the guitar they bought me and autographed while we were in Florida. They spliced together bits  and pieces of both videos to create a video specifically tailored to the meeting at hand. While the video was playing I waited behind a curtain. The last minute or so of the video included me playing the Petty song. Half way through the song they shut it off simulating a glitch. A few seconds after the video interruption I emerged from behind the curtain, guitar in hand, to finish the song. It was all really cool. After the song, I shared my story with a couple hundred people. I closed by singing " Live Like You Were Dying" by Tim McGraw. I left to a standing ovation.

Yep, we were treated like rock stars...... Awesome........

Afterward and for the next couple days Mandy and I were free to explore the resort and the coastline. We would on occasion have the opportunity to speak with some of the Dendreon staff and once again I was so impressed by why they do what they do. Each has a reason but collectively the just want to make a difference. They have! They do!

    Over and over I was told how inspiring my story is. Again and again we were thanked for coming. I pray for resiliencey for the people of Dendreon. They are good people. They deserve better than what has happened. Provenge will continue to be made though and that is all they care about.

   As I shared my story last week I began to realize that although cancer is a big part of my story it is not the focus. I once thought that the only people who might want to hear it were guys like me who have prostate cancer. The truth is that my story is about overcoming adversity and maintaining a positive attitude in spite of it. It's not always easy. Each time we face adversity it makes us stronger however and better prepared for the next challenge that lies ahead.

   We all face challenges. They are what shape us. they make us who we are and who we will become. I hope I continue to grow and become better with each challenge I face.