Tuesday, July 30, 2013

P.S.A. Time

It has been a month since I was to suppose to have my blood drawn for a P.S.A. Once again I have been in ostrich mode. If I don't get a blood test my numbers won't be up. Maybe if I don't get a blood test I won't have cancer anymore. The truth is I don't care if the numbers are up or down I am just tired of this disease. There are so many treatments out there and I have barely scratched the surface of what is available that I only fear dying of this disease on rare occasions. I just get sick and tired of being sick. The A.U.A. is recommending that men no longer be screened for Prostate cancer. They say there are too many men being over treated. Maybe it's true, I don't know but I do know that if our healthcare system follows these guidelines there will be a lot more men like me who will never have the opportunity to be cured. What I wouldn't give to have had the option to be cured. I hope that one day a cure comes. I hope for the sake of my sons and my grandsons that they cure this lousy disease. I have lost some really good friends in the last few years. The beast didn't give them a chance. Most of them were way too young to die of Pca. There will be many more to come if the screenings stop. There will be many more children without fathers and wives without their husbands. I am angry people. I am angry that people who are not walking in our shoes have been given the power to make ultimately life and death decisions for us. Would they feel that men have been over treated if they were the ones who received the late stage diagnosis. I think not. When will we men wake up? If they had said this about brwast cancer the streets would be filled with pink ribbons.
    This is all I have time for today. Todd

Friday, July 26, 2013

The Emotional Cost

It is Friday morning July 26 and I am at work. I always have a lot of typo's when I write from my phone but I have to write when I feel it inside otherwise anything of value is lost. I am hurting inside and it is not likely to go away anytime soon. I hurt not for myself but for the love of my life and what prostate cancer does to her.
    When I met Mandy I knew that I could search for the rest of my life and never find another like her. I had never known anyone so full of joy and so in love with life. It took so little to make her happy. In a material world all she needed was a bike and a kayak and her v.w. bus. That is the woman I fell in love with. We had a few short months  before my diagnosis and a few months after before hormones took away my libido. She should have left. Sometimes I wish she would have. Mandy met me a week after I turned 42. She was 27 and a single mom. The age gap didn't matter. She loved me. She still does and it kills me to watch this disease erode away the joy that makes her so amazing. Sadness is the new normal. It takes so little to make her happy. She just wants to be wanted. She just wants me to look at her the way a husband should. I make excuses and many are valid. Life does happen but truth be told a husband with a normal libido would make the time. It would be a priority. I love her so much. I ache for her. I am so frustrated I spew venom. I poison our marriage. Do I want her to leave? Perhaps I do. I love her and it would kill me inside but what do I have to offer. She is a wonderful mother but because of me she will have only one child. Our daughter will be 18 and out of school in less than three years. I may be gone soon as well. So will the best years of her life. It is not fair. What does she get out of this deal? She tries so hard to keep the intimate part of our marriage alive. More often than not she feels rejected.
   People have told me that if I had to get cancer that I got lucky that it was PCa. Those people are ignorant. Prostate Cancer is a slow death taking many casualties along the way. I compare what my wife goes through to watching a beautiful flower wilt and die due to lack of life giving water. It is wonderful that science has given me more years but is it too much to ask that I spend a little of it feeling masculine. Is it too much to ask that I be able to let my wife know that I see her as more yhan a friend and a partner. I want to show her she is attractive and desirable and wanted. These are the emotional casualties of Prostate cancer. Largely the patient does not feel it. Like a castrated dog he no longer thinks about sex. At least I am alive. What a pity. I always thought my wife would have to watch me die. Turns out to be the other way around. Todd
  

Saturday, July 20, 2013

Head Games

In the quiet hours I hear voices. Not the schizophrenic kind. I hear the voice of  fear. I hear the voice of doubt. They play games in my head. What is it like to die? Does it hurt? Has it happened before? Is there a heaven? SILENCE! I am sick. I may die. Not Today!
  If you hear those doubts in your head you are not alone. With me it is a constant struggle. I maintain may sanity with statistics. It is so funny because when I fired my first doctor I told him I am not a statistic.
If I were a statistic I would have died six years ago. The best of the best in the medical field can cite statistics but cancer is truly a disease of the individual. No doctor can tell you how long you will live. It seems so ironic to me that we never think much about death until we get sick and yet we are all terminal. No one is guaranteed anything more than the breath we just inhaled. Then one day we face the reality of our immortality. We have an expiration date. Damn!


I think about my life a lot. I want to do so many more things. I always thought I would have time. If I have a message to those who cannot see that they also will one day expire it would be "stop wasting your days". I know that I never truly started to live until I thought I was going to die. I am not saying that I wasted my first 42 years but the truth of the matter is that I, like so many others, took my life for granted. I no longer do that but I know I can still do better. I can give more back. I can love with all my heart. I can be a better man. I can be a better friend. I hope I have a lot more time but I don't know that I will.
   When I hear those voices now, I make friends with them. Todd

Friday, July 19, 2013

Where was the camera

Last night my band played for the community fair in the small town where I grew up. We do it every year and it is always a great time. Last night there was a special needs young man in the crowd. I am no expert but I assume he had downs syndrome. We rarely special needs people in the crowd, but when we do I always try to give them just a little bit of attention. It takes so little to make them smile and feel important and yet so many people simply look away. Do we fear imperfection? Anyway, this young man with downs syndrome is having a great time so I unplugged an d headed for the stairs to the stage. It was my intent to get up front and personal with him and do a little rock and rollin. As I stepped off the stage at a brisk trot my boot sank in a mole hole sending myself and my guild accoustic flying ass over tea kettle. I protected my guitar by shielding it from the ground with my body. I bounced a couple times and quickly got to my feet but it was clear from the peels of laughter that our concert had turned into a comedy show. I still did some strumming and singing with my new friend but I did it while blushing and grinning from ear to ear. He and I had a great time and after a minute I returned to the stage to end the song and get a fresh guitar. I also said something about making sure there was a crowd to catch me next time I decided to stage dive..WHERE WERE THE CAMERAS. I could of won the funniest home videos. My sweet Mandy Rose was laughing to tears. After the show the young man and his mom came up to talk and it was clear I had made an impression on him. He was elated and his mom said it was something he would never forget.
     It is so easy to bring joy to others. All we have to do is step aside from self and embrace the feelings of those around us. We must first be willing to open our eyes though. I have terminal cancer but I have been blessed with such an amazing life. Even so it is worth nothing unless I can give it away. Would it not be an amazing world if we could all give just a tiny amount more than we take? I want my life however much longer it may be to have depth and strong moral fiber. It always comes back. No matter how much we give away we always have more. It is a universal law and it is a good one. I encourage you all to try. Give something of yourself away each and every day and see how quickly the well fills up. I hope y'all have a terrific weekend. Todd

Thursday, July 18, 2013

Lupron fog

I have been on and off (mostly on)  hormone therapy for over seven years. I have tolerated the many side effects fairly well and consider hot flashes and my newfound love of chick flicks the new normal. When my chest began turning to breast I had them radiated. When I started gaining weight I exercized. I fight loss of libido and e.d. with trimix and patients.  When I have an unexplained urge to shoe shop I indulge myself. Lupron fog has never been an issue until yesterday. Okay, I admit I have been a tad absentabsent minded but just yesterday I realized that I am a month late for my lupron shot. A month!!! Wow!!
    I realize that at times I choose to pretend that I don't have cancer and I acknowledge the fact that the ostrich mentallity for the most part is not beneficial in my fight but I cannot stress enough that it is needed to maintain my sanity. Still, an entire month without medication cannot be good for my overall prognosis.
I was going to write more but I forgot what I was going to say. I guess I will get a dose of Lupron tomorrow. Todd

Tuesday, July 16, 2013

Relay for life

 In June of 2006 I was told I had cancer and two months later I walked my first and last survivor lap at the A.C.S. Relay for Life. I have participated in the relay each year since but I have not walked the survivor lap. I doubt I ever will. I wrote about the relay last year on healingwell.com and for those of you who read that post, I am afraid this will be much the same. The message won't change until the sentiment does.
   Forty years ago President Richard Nixon declared war on cancer. I remember all the made for television movies back then where the star had cancer and always died at the end of the movie. A lot has changed in the last forty years but not nearly enough. There have been victories but we cannot claim victory. People are still dying of this lousy disease. It hurts the worst when it is a child. Nevertheless it hurts when family's lose loved ones and when children lose parents. I tire of the poisons that pharmaceutical companies pump into the veins of those who hope that the poison will grant them a few more weeks or months. In many ways Big -Pharma is no better than the pusher on the street. Cancer patients are addicted to their drugs and they know it and they charge dearly for them. In this war on cancer when did the victim become the enemy. Nixon declared war on the cancer not on the cancer patients.
    This year as in years past my band will play at the relay. This year I will be the guest speaker for the luminary. I will then walk the luminary lap and see the names of all those who are fighting for their lives or have fought and lost. It sickens me. Still I will walk. I will walk because this is my 8th relay and if 8 years in a survivor shirt can give a fellow patient a grain of hope then that is enough. This year as in past years the word hope will turn into the word cure. Talk is cheap. Words mean nothing without action. When do we get past the hope and move on to the cure?
   Last year I had the privilege of meeting a group of people from a bio-tech company who are different.
The people who make Provenge have a motto. Patient first. They care about people. Their commitment has renewed my faith. My blog is not a promo for Dendreon. I just like to call it as I see it. I believe that because of Provenge therapy I am going to be at many more relays. Todd

Tuesday, July 9, 2013

Unexpected

Last Sunday, I felt a slight twinge in my back just before bed. I didn't think much of it at the time, after all I had went water skiing the day before and I mowed the yard and detailed both my wife's car and my truck, and washed the travel trailer earlier that day. I also went on a 10 mile bicycle ride. My back was entitled to hurt a little right? I woke up Monday morning and it was a bit more than a twinge and by days end it was dropping me to my knees every time I would move wrong. The on staff nurse at my work thought I might have a kidney stone. This morning I lasted at work a whole hour before I left to see my doctor. It seems I strained the primary muscle group on the right side of my back which it turns out is a very painful ordeal. I now have a large bottle each of pain pills (hydrocodone) and muscle relaxers and strict orders not to work the rest of the week. I'm all for having time off work and getting better but no work equals no pay. Amanda and I do not live paycheck to paycheck we can actually miss one every now and then. lol Trouble is we are just getting back from vacation and this could not have come at a worse time. We will get through it but I hate it when things like this happen. It just sucks that I am not able to count on my body holding up to the abuse I give it. I wish it had been a kidney stone. At least needing to pass a stone wouldn't imply that I am getting old. Getting old sucks but it beats the alternative.
      I was contacted by the folks at Dendreon this week. I will be taking an active roll in a patient to patient information sharing sight called healthtalker. They have read my blog and a lot of my posts at healingwell.com and thought I would be a good fit. Well I am feeling a bit woozy right now so I will say good night and leave y'all with a photo I took of my Black Lab (Cash....the dog in black)
It doesn't even look like a photograph to me. Maybe I am just amazed because usually I take terrible pictures. He is a handsome boy isn't he. Regards, Todd

Friday, July 5, 2013

Go Fourth.... Happy Independence Day

 I just wanted to share some pics from last night. We had such an amazing time playing for a crowd of over 10,000 people. We shared the stage with guest friends and family. It was so much fun. In my next life I want to be a rockstar. My band (BairdCreek) started playing together 15 years ago. At the time, the core of the group was my brother on bass and my dad on acoustic guitar with me playing lead guitar and most of the lead vocals. My dad is now 71 and has not played for about 5 years. Last night he shared the stage with us for half an hour. :-)
 It was truly a blessing to have dad play with us again.  I have come to miss him telling me that my amplifier is too loud and we need to play more old school country. We also shared the stage with a good friend who depicts Brett Michaels in a Poison tribute band. He came up on stage to sing Every Rose Has It's Thorn and Talk Dirty To Me dressed in full glam attire. The crowd loved him. He would say "and why wouldn't they"
 With the exception of the first song, (my brothers bass was out of tune) the music was really good. I don't remember tanking any song and the opening band was awestruck.
   If you came to this blog through a search engine I welcome you. You will not find a lot about Prostate Cancer treatments or side effects or anything else for that matter. I will occasionally write about test results or when I start a new treatment but for the most part I will be writing about the important aspect. LIVING!!
I am way too young to stop living out loud just because I had the luck of getting cancer. You will notice I didn't say bad luck. Getting prostate cancer in some ways was the worst thing that ever happened to me and in some ways it was the best. It is all a matter of perspective. My glass is not half full nor is it half empty. My glass is filled to the top and overflowing. I am not an optimist.... I have faith.

I turn 50 this year. I think it is going to be a banner year. Todd

Wednesday, July 3, 2013

Northern Idaho

People always talk of Hawaii or the Cayman Islands and other tropical locations.  They may be nice places but I love northern Idaho. Sun, forests, mountains and beautiful lakes set together in perfect harmony. I see it as an all season playground for those who love the outdoors. I think I might like to retire there someday. Although we were only there a week we had a great time. We mountain biked the route of the Hiawatha, 
( An old railroad turned bike path.) we hiked mountain trails, we water skied and even spent a day at an amusement park. Mostly we relaxed and enjoyed being together away from everyday life. We did not think of cancer. I find myself thinking less and less about cancer every passing day. Sure, I have my moments where it dominates the forefront but for the most part it is background noise.
 While we were in Idaho we went to Silverwood theme park for a day. My daughter and I convinced my wife to go on a roller coaster. ( she is terrified of roller coasters ) The picture tells a thousand words but I would never share that picture. It depicted terror at it's purest form. It was later in the week while looking at that picture that I had an epiphany of sorts. My wonderful wife, my best friend and my soul mate is on a roller coaster every day of her life because of the disease that to me has become the elephant in the room.
Maybe I seldom think about it but she lives her life 3 months at a time. Her life is filled with rapidly changing peaks and valleys. It gives me comfort knowing that because I was able to be treated with Provenge, that the road she is forced to travel in the name of love has been much smoother. I wish all men with advanced Prostate Cancer could  receive Provenge early on in their treatment. I believe it would make a huge difference in their lives and in the lives of their families. All I really know is that it has made a big difference in my life.


I wish I could say it is good to be back from vacation but that would be a lie. I love being on vacation. I wish I could be like one of those guys who travels around eating weird food and getting paid to do it. It would be so cool to have vacation as a vocation. Yesterday I started work at 7a.m. got sent home at 1p.m. and told to return at 9 p.m. for a few hours. A few hours turned into 10 hours and I pulled into the drive at 7:30 this morning. What is the matter with my employer. Do they not realize that I have cancer. I could barely keep my eyes open on the 27 mile commute home.

So it is 2:30 in the afternoon on Wednesday July 3rd. I have to work at 6 a.m. tomorrow and then my band plays for the fourth of July celebration later in the evening. Tomorrow night will be the highlight of my month. Playing for 10,000 or more people feels like being a real rock star. I hope we don't suck. So anyway, thats pretty much all I have to say for today. Happy Independence day. Todd