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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Monday, April 20, 2015

Sometimes I Forget

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

Saturday, April 18, 2015

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

Thursday, April 16, 2015

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.

Wednesday, April 8, 2015

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.