Thursday, July 9, 2015

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. 

Saturday, May 16, 2015

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.  

Friday, May 8, 2015

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

Monday, May 4, 2015

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.

Friday, May 1, 2015

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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Friday, April 24, 2015

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


Wednesday, April 22, 2015

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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