Tuesday, December 24, 2013

I love Christmas

    It is six a.m. on Christmas Eve day. I am at the the mill for 7 more hours and then I am free. I love this holiday . I love Christmas. I love everything about it. I love the food, the music, and having family over. I love the tree and the lights.  Mostly I love to give gifts. I am a sucker for Christmas. Mandy balances me. There was a time that I would spend money we didn't have to give nice gifts to the people we love. Mandy introduced me to a new concept. It's called a savings account. They should have had those things years ago.   Sometimes it is still tempting to pull out that little piece of plastic but this year I was a good boy. Maybe Santa will put a little something extra under the tree for me because I was so good. Miracles can happen. 
   In our family Christmas Eve is the big family get together. When we bought our home in 2006 my mom was thrilled that it had a large family room on the back of the house. Christmas Eve has been at our place every year since. The past few days have been spent getting our home ready. Mandy has been busy baking and making her smoked salmon dip. The prime rib is seasoned and warming to room temperature. The tree looks beautiful. I felt like a little kid this morning. I haven't felt like this in a long time.
   Last year was the first year without Grampa. My gramma past away the year Mandy and I were married. I miss them the most at Christmas time. I am certain they will be close by. 
   This morning I woke up at 4:30 to be at work by 6:00. I cannot describe the feeling I had inside as I stood in the kitchen making coffee and looking at our daughter asleep on the sofa under a pile of blankets. She stayed up late to finish wrapping gifts for her mom and fell asleep to the glow of the tree lights and of course to the light of the television. There was a cat on each side of her and they must have been cozy as they didn't even come to get their morning piece of turkey. I felt such a warmth in my heart. It was like everything in my world was as it should be. Yes.... There is a Santa Clause. 
   As I was writing this I remembered that I had an oncology appointment yesterday and among other things they drew blood for a P.S.A. I took a break from writing to visit the Kaiser website and check my latest numbers. The numbers dropped again for the fifth consecutive month. I am now all the way down to 0.29. I cannot believe that after 91 months I am still close to zero. I guess I won't be needing anything extra in my stocking after all . What an amazing wonderful Christmas present.
    As I said previously I love Christmas. It hasn't always been this way. When you live in a garage for three years you don't even bother putting up a tree. I didn't have the money for one anyway. One year during that time in my life I did a drive by at a Christmas tree farm and stole one that was growing near the road. Looking back upon that time of my life truly makes me thankful for the blessings in my life. I don't deserve them. There were a host of angels that brought me from the darkness to the light. I will never forget them. Some were merely people who were put in my life when God knew I needed them and I believe some were truly angels. It is Christmas time. It is the season for miracles. I believe in them because I am one. Merry Christmas. Todd

Saturday, December 14, 2013

The tide turns

    In January of 2012 faced with a rising P.S.A. and growing metastasis despite continued androgen deprivation therapy I approached my Oncologist at Kaiser Permanente about possible options in my treatment. He informed that there were three possible options available to me. He mentioned Taxotere, Zytiga, and Provenge. I had been following the Provenge saga since my diagnosis in 2006 and I was excited to be a potential candidate for the therapy. After the blood work was completed my case manager told me I was a perfect candidate for Provenge. Mandy and I were elated. We began to plan for the 7 weeks I would be required to miss work and to get all of our other ducks in a row. It was at this time that a C.T. scan was ordered. The scan revealed that I had a 1.5 cm metastasis in my left lung. My oncologist said that due to the lung metastasis I was no longer a Provenge candidate. We appealed the decision citing recent changes to he C.M.S. guidelines stating the only exclusion to Provenge use was Hepatic (liver) metastasis and we were once again placed on the list. A few weeks later in mid February I received a call from my Oncologist. He was calling to inform me that a new scientific study published in the Journal of the National Cancer Institute has proven that Provenge would not work for me. He told me that the evidence had shown I was too young and that Provenge might actually cause the cancer to advance expediatly. Mandy and I were crushed. Once again we were taken off the list. I began to post our frustrations on Healingwell.com. I received a lot of encouragement and a lot of good advice and also to my surprise I began to receive information from an unknown source that the scientific article that my doctor was citing might not pass the smell test. We began to look into things a little deeper and made the decision to fight Kaiser Permanente foregoing all other treatment in an endeavor to receive Provenge. We appealed the decision all the way to the Washington State Insurance Commissioner who ruled in our favor stating that Kaiser had made the decision not to treat on speculation and unproven scientific documentation..
   At this point I must digress. Our appeal process with Kaiser took roughly two months. During this time my Psa had risen from 22 to over 100. It was doubling ever 6 weeks and I began to feel sick again. We were afraid but we knew in our hearts that if we were to have any kind of longevity that I had to receive Provenge first. We began to formulate our backup plan. We would apply for patient assistance through the folks at Dendreon and we would go outside of our H.M.O. Network and see a doctor who would prescribe Provenge. We made an appointment to see an expert in the field of Prostate cancer research who was based in Las Vegas Nevada. The people at Dendreon were wonderful to work with and they helped us every step of the way. My healingwell family who had been following the saga online donated enough money to cover the cost of the trip and for the cost of the appointment. We began to feel confident that no matter what, Provenge therapy was going to happen. We purchased our plane tickets reserved a modest room in Las Vegas and made the appointment with Dr. V. Two days before departure my case manager at Kaiser called to inform me that the State of Washington had ruled in my favor. I was to receive my first Provenge treatment the first week of May, 2012. We had won. I cannot fully describe how we felt inside upon hearing this wonderful news. We cried tears of elation and relief. It was over. We went ahead and kept our appointment with Dr. V as part of the ruling recognized him as an expert in the field and Kaiser was ordered to follow any clinical advice from him verbatim. With the sweet tase of victory frown on our lips we headed to Vegas to meet one of the many people who had made it possible and to celebrate with a very good friend who also was a prostate cancer survivor.
    At the core of Kaisers decision not to provided treatment was the fore mentioned article authored by a Ms. Marie Huber. I had read the article( at least the parts I could understand) and found it ironic that the opinion of a stock analyst with a minor in bioscience could gain so much traction. There were many others within the scientific community that referred to the article as junk science and yet because of this woman's opinion I almost did not receive this potentially life saving treatment. Recently the S.E.C. Filed charges, fined, and suspended Ms. Huber for 6 months on grounds that she essentially used her influence to mislead the medical community while along she would lose massive amounts of money if the price of Dendreon stock did not go in the toilet. I do not claim to know the facts other than what I have read and that is very little to be honest but I know enough. It sickens me that the greed of a few could impact the lives of so many. I am so angry right now it isn't funny. How many men lacked the testicular fortitude to fight for the right to be treated with Provenge having been denied based on the same piece of crap article are no longer with us today. Provenge gave me 14 side effect free, progression free, months before we had to go to another treatment. In the humble opinion of this man she should face charges of unintentional man slaughter. 
   I have many friends within the Dendreon community who have been struggling to keep the ship afloat largely due to the same article that caused me so much anguish. I wish a pro bono attorney would file a law suit against the witch on behalf of me and so many others whose lives were affected by ms. Huber. I pray that Dendreon can right the ship and repair the damage that was done by her lies. Bottom line he treatment works and I will be here many more years because of it. This is just another example of how greed, big money, and Wall Street affect the lives of those of us on main street. Todd

Monday, December 9, 2013

GFMPH

    Two hours from home aboard a Boeing 767. Mandy is 300 pages into her Nicholas Sparks novel and I just witnessed my team suffer their second loss of the season to the 49ers. We are both excited to be close to home. We miss our kids and our dog but we are also sad that we had to say goodbye to our new friends this morning. It was an amazing week. I now fully understand the true meaning of GFMPH
   Several years ago a group of online friends decided it was time for a gathering. They had known each other for years but had never met. All of them shared a common bond. They were all survivors of prostate cancer whom had met on an online forum. This gathering became known as GFMPH. G.F.M.P.H. Is an acronym. It stands for good for my prostate health.  What started as a gathering of a few has grown each year and this last week Mandy and I attended our first such gathering. Although this one was much different from the others it was still nothing short of life changing. 
    Last Saturday Mandy and I landed in the "Big Easy" to embark on the first ever G.F.M.P.H Caribbean cruise. Aboard the N.C.L. Jewel we shared 7 days and nights of bonding with 13 other Prostate Cancer Survivors and their wives under the warmth of the Caribbean sun. We met Saturday evening on the eve of the cruise for an authentic Cajun meal. It was there that many of us met face to face for the first time. We quickly learned that cancer was not our only commonality. It seemed we all love to laugh as well. We knew that evening that the following week was going to be fun but we had no idea that we would come away from the gathering with 26 new family members. 
    Normally these gatherings take place at a forum members home and tend to be more intimate due to the confinement of being in a single location.  Being on an enormous cruise ship and traveling from port to port spreads things out a little. We were surrounded by a few thousand strangers and spread out over several decks of the ship.  We however had a week and the previous gatherings were only for a weekend.  We made the most of the time spent together.
   I never had a complete understanding of the GFMPH gatherings prior to this week. They always sounded like a lot of fun but life changing? I had my doubts. They always occurred a long ways from the west coast. Going to some guys home that I had never met to hang out with a bunch of people I had never met seemed a little weird. I had met only three of my healingwell.com brothers over the years and although upon meeting them we knew we were friends for life I just couldn't grasp the idea of these gatherings. 
    Last March I had the privilege meeting and sharring a meal with two of my healingwell brothers. Waterguy started talking to me that evening about going on the cruise. I told him we would think about it but it was so close to Christmas and our daughter is in high school so I really couldn't see us going. I was wrong. My buddy would not let it rest. I am thankful for his dogmatic attitude. Two months ago he basically told me " Todd, you and Mandy are going on this cruise"
   I can only say so much about this gathering. What happens at gfmph stays at gfmph. The members elect to remain anonymous. The time we spent together however was worth every dime. It's funny how being around other people facing the same demons as yourself can actually make you feel healthier and stronger in your fight. Mandy and I walked away feeling less alone in our situation. I have known most of these people for the better part of six years. Now I have a face to go along with their names. Instead of a screen name and a post on a forum I know I am talking with my family.
   I encourage the folks from ( healingwell.com prostate cancer) to get involved with gfmph and do your best to try and make it to a gathering. It will feel awkward for about five minutes. After that it will feel like coming home. I encourage those who have not found ( healingwell.com Prostate Cancer Forum) to look it up. You will find truth in the statement "no one fights alone"
   The next gathering is in Florida in March. We will be unable to attend that one as I cannot secure the time away from work. We are already planning September in New York though. I guess once you have been to a GFMPH you just naturally want to go to another. Yes my friends, they are that good. My good friend Raddad loved them. I never met him but wish I had. His enthusiasm and faith were contagious. Jennifer if you read this I can only say thank you. I will be sending many photo's in the future. Your father was a wonderful man. He was the best friend I never met and I miss him. That's all I have to say right now. Don't get me wrong. There is much more to say but I am still digesting in my heart what took place this last week. God Bless..... Todd

    

Thursday, November 14, 2013

49 and holding

Age is just a number so the saying goes. You're only as old as you feel. Fifty is the new Forty.  I have heard them all. In a little over two weeks I will find out for myself.
    Fifty is an age nobody thought I would see. As I near the half century milestone I will also pass another significant milestone. I will be a 90 month survivor of stage 4 Prostate cancer.
   As we walk through life the milemarkers along the way have meaning. At age 5 we start school. That was my least favorite at the time but I also got my first b.b. gun that Christmas so it made up for the school thing a little bit. At age 8 I was able to go hunting with my dad and bagged my first buck. The tradition of hunting with dad has endured for 41 years. Sixteen was a no- brainer. My first car was a 1962 Chevy impala. It had a 283 with a two speed powerglide transmission. The engine had a flat cam so dad and I rebuilt a 327 in the garage and dropped it in. We painted it starburst metallic fireball red and put a set of crager coke bottle rims on it. The interior was restored and a pioneer supertuner 8 track deck was mounted above the console feeding jenson triaxial speakers in the rear deck. I miss that car. At 18 I graduated and got my first apartment. It was a bittersweet occasion.  21 was fun for a while. Not so fun the morning after. At 25 my car insurance dropped to the good rates. I was married had three kids too many bills and too small a paycheck. At 30 I was separated from my wife and living in a studio apartment trying to make it all work. It didn't.  At forty I had lost it all and was a junky living in a garage. I celebrated those two significant milestones alone and contemplating suicide. At age 41 I went through with my suicide plan. I lived and at 4 months prior to my 42nd birthday I was born again. At 42 I was diagnosed with advanced cancer and given a year to live.
   I never thought I would see this day but here I am. As I enter the threshold of 50 I would need a ream of paper to single space type my blessings. Eight years ago I had nothing except a job. My kids and family disowned me. I was a mess. My credit rating was in the  300's. I needed a cosigner for a payday loan. I owed $12k in traffic citations.  I owed $20k to the I.R.S. I stopped answering my phone as it was most likely a bill collection service. I was lonely.  I was alone. I wanted to die.
    Today I am married to the love of my life. My relationship with my children and my family is better than it has ever been. I have a mortgage on a modest but comfortable home. I have a Dodge diesel in the drive with a new camper on one side and my wifes kia soul on the other. I have a ski boat and snowmobiles in the garage. I am still in debt  to the top of my butt crack but it is for the life I always dreamed of living. My new credit score is nearing 800. There is food on the table and the bills are paid. The wolf is occasionally at the door but I am still a crack shot so he never tries to come in. Best of all this last year has been the best of my life. I have so many friends new and old. I am blessed beyond that which I deserve.
   This year I will turn 50 among 28 of my newest friends with my true love at my side. I am so thankful for this life.
    I have no Idea what I will do at age 60 to top this but I plan on being there among friends and family. Y.O.L.O.

Tuesday, November 12, 2013

A day in the woods

The air is still. The mist blankets the valley floor. The forest is silent.  I am alone in this place. As daylight breaks over the marsh below the silence is broken by a  myriad of birds greeting the  new day. A chipmunk joins in the chorus and then another. The world is alive. A blacktail deer with her fawn in tow emerge from the jack firs to graze at the edges of the marsh. The fawn was born last spring and has only recently lost it's spots. I think of bambi as it is more interested in running around than eating.
   I love this place. I have hunted this valley since I was eight years old. I hunted when it was covered in dense forest. I hunted it when weyerhaueser clear  cut as far as the eye can see. A new forest has grown up but the marsh remains. It is unchanged. Nobody hunts here anymore. The young trees were planted so tightly that it is impossible to see into them. There is no longer clearcuts to sit and watch from the comfort of a truck. Good riddance. I won't miss them. I am old school  I will hike 10 miles today. I love being in the woods. I love everything about it. For now as I sit motionless in my mossyoak cammo I am a tree. A twig pops somewhere below me. Elk are far from quiet as they roam through the forest. Where are they? Another branch breaks but closer this time. The minutes pass slowly.  The deer walk away and vanish into the trees. Below me the first elk comes into view followed by a dozen more cows and calves. There are no bulls in this herd except for one young spike. The season will be ending in two short days and I have had no luck at all. My dad is a mile below me watching the only cut on the mountain.  He will be wondering where I am. Time to get up and get moving before my  butt freezes to the ground. I wonder if a frozen ass is G.F.M.P.H. haha. Todd

Thursday, November 7, 2013

Elk season and other stuff continued.

Mandy survived. The wind pounded the coast at 40 m.p.h. and there was not a lot of sleep to be had but she and our daughter stayed warm and dry despite sleeping in a tent just above the surf line. The pictures said a thousand words. The Olympic peninsula is a place of epic beauty. Our daughter received a B+ for the field trip and Mandy had the time of her life.
  I am still hunting elk. My faith in my hunting abilities is waning. I am just not doing very good. I will write more later but once again, I am exhausted. To all of you who follow this blog I apologize but I have just been wiped out when I get home and have a hard time sitting down at the computer. Todd



Monday, November 4, 2013

Hunting season psa and other stuff

Tonight I am a bachelor. Normally this time of year Mandy would be a hunters widow and trust me, for much of the next two weeks she will be, but tonight I am alone and it feels weird. Since our wedding, 61/2 years ago we have only spent 1 night apart. We share everything. We are each others best friend. I am worried about her. Tonight she is a chaperone for a sophomore biology field trip to a place called  Rialto beach on the Olympic peninsula. It is November and it is pouring rain and the wind is blowing and she and our daughter are sleeping in a tent. I miss her. I am sure she is fine but I still worry. I wish she would call me.
   I had some really good news this week on the Prostate Cancer front. My P.S.A. has dropped again. It is now 0.70. This is the lowest it has been in 4 years. It seems the Zytiga is working. The Provenge will help the Zytiga and I will keep fighting. I am excited but I am also exhausted so my true feelings may  not show through my words. I hunted hard today. I did not see a single elk. By the time I got home I was chilled to the bone and soaking wet. Elk hunting is so much easier when you have hunting partners but I hunt with my dad and he is 71 and needs a double knee replacement. Needless to say he has a hard time getting out of the truck. Most of my hunting is done alone. It is really nice to have him waiting at the bottom of the hill with a warm truck and a cup of hot coffee. (or a nip of crown royal to warm the bones.) I know this or the next year maybe the year after will be my last to hunt with my dad. I am going to ride this ride as long as it lasts. My dad is an amazing man. I didn't get his height but we look so much alike. He is 6' tall. I am 5'6" I took after my 5'1" mother. lol He and my mom are both wonderful parents and I have always been proud to be their son. Elk season may not be fruitful this year but we will do our best and hope for a little luck. No matter what it is a good time shared with family. I am going to bed now. Life should slow down soon and I will have much more time to write. Goodnight, Todd

Tuesday, October 22, 2013

The value of a core support group

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For 89 months I have fought this disease. For the first year, I did it alone. That's not to say my family wasn't there for me, My parents, my children, my wife, and for a time even my Grandparents all were there for me. Any of the aforementioned would have done anything for me at any time. Still, I was alone. It is hard to talk about terminal illness with persons who are emotionally attached. They keep crying. It is hard to talk to your wife when you are worried that you will never again have a libido. It is hard to talk about the "what if's" to your children who fall apart for days after the conversation. Cancer is a burden that in many ways must be carried alone. If you do not have a positive outlook people assume that your lack of faith is the reason you are getting sicker or that a treatment is not working. (paraphrased from a post by a healingwell member) " sorry beejane, I liked it" To express fear or doubt is to show weakness. One night during a graveyard shift that seemed like it would never end, I began surfing the web. I simply googled a question. "How long was I going to live with advanced prostate cancer?" I was not encouraged by the results of my query. I was basically learning that I should already be dead. I even called a number for a cutting edge treatment facility that said "sorry there is nothing we can do for you." .....NICE!!!
I continued to surf the web until at around 5a.m. I clicked on a website called healingwell.com. I read some of the posts and decided lurking was for cowards and signed up as a member. I again typed my question.... The replies were not what I had expected. I don't even remember what they were to be honest but it doesn't matter. My battle with cancer changed that morning. I found a place where everyone was to one degree or another, in the same boat as I. I found a place where we all shared the same fears and faced the same demons. I found a place where I could vent or rant without judgement. I could share my dreams and my struggles and not worry that those I shared with would have a breakdown. I found a group of people whom over the years have become closer in many ways than my family.
    It is this group to whom I dedicate this post. My friends and my family. To date, I have met four of them face to face. In a month I will have the privilege of meeting several more. I honestly do not believe I would be here without them. They have carried me when I could not walk. I have been there to carry the load for them as well. We are a band of brothers and we will leave no-one behind as we battle this disease. Thank you so much for being there and being my friends.


If you have a chronic disease, please find help to deal with it. Nobady should carry the burden alone,. Todd

Sunday, October 20, 2013

A little intimacy.

We just got back from the beach. Mandy and I have not been alone together in well over a month. Having a 15 year old sharing the room next door is challenging. Saturday morning we were suppose to wake up early, load the camper, buy groceries, drop off the daughter and head to the beach for a little us time and some razor clam digging.

 This is how it really went:


Good morning honey,

Good morning....... What time is it?.... I don't know, my eyes are stuck together.... hold on.... Oh crap., it is 9:15

I got the Camper thrown onto the truck in record time, threw some clothes in a backpack, grabbed the dog and we were off. We dropped off the daughter and headed to Fred Meyer for groceries. We were only an hour behind schedule. Dang it.... Mandy, we gotta go back home. Why? I left the rocket fuel in the fridge. (code name for trimix). No.... we are not going back for it. Okay, I don't think I need it.

I DIDN'T NEED IT. That comes later

We made it to the beach and ordered a pizza and bought a couple bottles of wine. The pizza would be delivered to our campsite in two hours so we took advantage of a beautiful day to ride our bikes and drink wine on the beach.
What a wonderful time together. We rode and laughed and drank and laughed some more. At times we laughed until the tears ran down our cheeks. The pizza came at 5:30 and it was so delicious. After that we went clamming and then for a sunset walk on the beach. I have included a few pics.
This was our campsite
 Walking through the tide-pools at the hollow
It was an amazing sunset. We held hands and walked together. There was no place either of us would have rather been. After sunset we returned to our campsite for more wine, a warm campfire and a heated game of cribbage..... Mandy won....
By the time 10 o'clock rolled around we were exhausted. I don't remember my head hitting the pillow. Neither does Mandy.

We had to wait until this morning for "us" time. After that we rode bicycles along the beach for 10 miles played air hockey and drank peanut butter milkshakes. It was an amazingly fun weekend that recharged our batteries.


Many of my friends have commented on my last post. To them, I say thank you. I will never give up, nor will I ever back down. Sometimes I do feel sad. Sometimes!!!

My friends are right. Mandy and I are as close as two people could ever be. This weekend much intimacy was shared, and only a small percentage of it was physical. It is our oneness that makes our togetherness so good. Even if it happens less than we would like, it is that much more special when it does.

I hope I have not gagged y'all Talk to you later, Todd

Wednesday, October 16, 2013

I don't know how to fix it

Lupron is a blessing and a curse. Combine it with Zytiga and it is even more so.
   I love my wife. She is my world
I would do anything for her. I am failing and I have no idea how to fix it.
   I participate in an online forum for prostate cancer patients. We are a unique mix of men who fight this disease on many fronts. There are those who are most likely cured. They are the ones I envy the most. The talk of dealing with side effects and worry about when they are going to regain sexual function and continence.  They complain that their equipment is smaller than it use to be. Most eventually move on after recovery logging in only to annouce a normal psa or to say  hello. Some find a unique kinship with others on the board and stay to help the others who find the site at a very scary time in their lives.
   There is also a group of caregivers who are rocks. (it is not just men who find the board) They are amazing in courage and strength.
   There are older gentleman who have non aggressive cancer and have opted for watchful waiting as a treatment plan. They support each other. They are a great bunch of men.
   There are radiation guys, brachy guys, and a host of others, all fighting the beast and cheering each other on.
   I belong to the young guys with advanced disease. Surgery and radiation are not options. We get the drugs. Hormones,  Provenge,  chemo. We hope the available drugs work until a new one comes along. The word "Cure " is not part of our vocabulary.  It is something we dream about and hope for. It is Santa Clause, the Easter Bunny, an honest Lawyer, and a morally sound politician, rolled into one. We discuss treatment options, side effects, and precious time. We speak of hope.
   Most of us are on hormone therapy. We will be for the remainder of our lives. It robs us of our body hair our masculinity and most important, our sexuality.  Erectile disfunction medicine can make the equipment work but there is nothing that can replace our libido ( desire)  that will not cause the cancer to spread. It is not a big deal to us. We are like casterated dogs. Something is missing but it doesn't really bother us. It does however affect those who love us and still desire us. It is hardest on them. They are the true victims. The sex can still hapen but we men rarely think of it. It leaves our wives feeling empty,unloved, undesired. My wife is dying inside and I do not know how to fix it. At times I wish I would die so she could have a full life. Today I am sad. Todd

wwwsEswzesvqe

Saturday, October 12, 2013

Crazy busy

I haven't written in over a week. It  has not been for lack of wanting to.
Lately there hasn't been enough hours in the day. I guess the days are getting shorter. Work is keeping me really busy with a ton of overtime and our daughter has volleyball at least two nights a week.
   A lot has happened. I was okayed to begin my third month of Zytiga. Apparently my blood levels and liver functions are holding steady. My P.S.A. has fallen to 1.06. I hope to be in the zero club next month. Today I had a thought that will not let me alone. What if I am not? What if my P.S.A. goes up instead? I know the obvious. I would start Xtandi and then perhaps tak-700 but then what? Taxotere..... Jevtana..... dosataxel.
   There are times when I am uncertain about my future. Sometimes I am afraid. My overall survival depends on the effective duration of the weapons in my Prostate Cancer arsonal. The longer they work the longer I live. I hope that Provenge combined with Zytiga lasts a long time. I want to be cured. I want a cure not a treatment.  I am sick of side effects. I am tired of my wife feeling unwanted and unneeded. She deserves so much better. :-(

Wednesday, October 2, 2013

Month 88

The infusion room is full today.  Nobody speaks. Caregivers sit silent. The weight of the world can be seen in their eyes. I am filled with empathy for them. I think of Mandy. I protect her as best I can but I know it weighs heavy upon her heart..
    I drew the short straw again. My nurse has no tact. She has to have the last word on everything thus exposing her ignorance. I have no patients today. It is not her fault. She tries. I simply hate this place. Empty eyes.
     It is raining. It has been for days. This morning was cold. It feels like we never had q fall this year. Summer ended and winter began. Grey sky's.
    I am so tired today.  I could sleep if I wasn't so cold. My I.V. itches. I wish they would bring in my meds so I could get away from this place.
   It has been 88 months since my.diagnosis.  That is so amazing.

   Last night our daughters J.V. volleyball team won the first two of the three games led by the 9 kills and 3 aces our daughter made. The benched her the last game which the team lost. We were getting ready to leave when the coach told her to go get a varsity uniform. That was the coolest thing ever.  88 months..... If I had listened to the doctors I would have been dead 76 months ago. It would have been sad to miss last night due to premature death.
   I cannot stress enough. Live life outloud. Go for everyrhing. Y.O.L.O

Saturday, September 28, 2013

Good morning

Lately my writing feels stagnant. I don't know why except for we have been couch potatoes for a few weeks. Everything we do feels forced Mandy wishes we could be bears. It would be so awesome to hibernate.  I am in my recliner beside the fire drinking coffee as my family sleeps. The fire feels good.  There is a storm coming. The wind is blowing  at a pretty good clip. The weather service predicts 5"-10" of rain. I am glad we live on a hill. That is a lot of rain.
There is not much happening on the cancer front. Zytiga is still making me sick. It is tolerable however and most mornings I keep my breakfast on the inside. It is weird what we tolerate to survive.  I never thought daily nausea would be the norm in my life but then again I never thought I would be okay with being an Enoch. 

 
Yesterday we took a leap of faith. Going into debt is always a hard thing for us to do. If I die what will happen to Mandy. Her attitude is that life does not come with a guarantee so we are going to have a good time while we are here. My thoughts are a little different. I kind of feel like the more toys in the toy box equate to more lures in the tackle box to catch herself a new husband when I get sick of fighting this crap. ........Okay that's morbid and y'all might not see the humor in it as I do. Anyway, yesterday we brought this thing home. I have wanted one my entire life. This year we will be camping in the snow and snowmobiling day and night. No reservations required. Oh and we can also tow the boat behind this baby. We traded our travel trailer in on it. We took a beating on the trade but the trailer was starting to fall apart. I would never again buy an R.V. made by heartland. They are not a company that stands behind the quality of their craftsmanship.

    It is time to log off. I need to go put air bags on the Dodge.  The camper is heavy.... Y.O.L.O.








The view of others.

At times we need to look at ourselves through the eyes of our peers. As we walk through our daily lives we most likely will not see the subtle daily changes but today I found out that others do. Today while I was walking through the mechanical department exchanging insults with my co-workers and generally being a complete smart @$$ one of the supervisors made the comment " you really do feel good don't you? " I paused and thought for a moment before saying. "Yes I do, I really do feel good Kevin"
His reply caught me a little off guard. He said " you look good, You look better than I have seen you look in a long time.  A year and a half ago I didn't think you were long for this life."
I didn't see the difference in my appearance. I didn't think that I looked sick. I really do feel good. Except for the hour of morning sickness after taking the Zytiga. I wish I didn't have to take this stuff. My testosterone level is fractional. I have lost 12 pounds. I think I am losing muscle mass and the hot flashes are the worst but I don't feel sick. People talk to me again. It's funny how they didn't talk much when I looked sick. Maybe they didn't know what to say. Maybe I didn't have much to say. Cancer, for quite some time, was all I had to talk about. Mandy told me I have had a gleam in my eye again since my first infusion of Provenge. Whether it is the medication or the hope that it gave matters not. The bottom line is I am alive, I feel good, and others around me can see it. How is it that money and outside interest can play such a huge role in the treatment of cancer? It appalls me that wall street impacts cancer treatment in the name of the almighty dollar. My humble opinion, "there is a special place in hell for those seeking to profit at the expense of those who suffer from cancer." Asta lavista baby

Sunday, September 22, 2013

My favorite things about fall

Windy days and falling leaves provide the most entertaining form of spousal competition Mandy and I could dream up. " Leaf Catching "For some reason Mandy derives great satisfaction competing with me but only if she wins. Everything is competition. Foosball, dart, kayaking, biking, etc. they are all forms of competition. Five years ago we invented leaf catching. Oh it is a game that has been played by countless others, of this I am certain. Mandy however, takes it to a new level. We chase  after falling leaves shoving them in our pockets until we are both out of breathe and exhausted from running and laughter. Last year she turned it into a contact sport. She has yet to beat me. Have I ever mentioned that she keeps me young.

As the mountain air turns colder the Roosevelt elk begin to rut. The high pitched bugle's make the hair stand up on the back of your neck. Thirty miles up the highway from me is the home of the Mt. St. Helens elk herd. I know of nowhere else where a person can find a greater population of mature branched antler bull elk. Hiking in this area is so awesome during the rut.

Hunting season, fishing season, watching the Seahawks on Sunday morning. Digging clams at the coast. A cold morning a warm fire and a hot cup of coffee.

I love this time of year so much. I love the beauty of the hillsides. I love being at the coast as the huge storm driven waves crash over the rocks. It's true that after a while the grey sky wears on me but fall is such as awesome time of year.

Amanda and I just closed the deal on a.camper for our Dodge truck. We will miss our roomy trailer that has given us 4 amazing summers but it is just not practical anymore. We are now looking forward to going up to the south side of Mt. St. Helens and camping with the snow mobiles.  I have a picture in my.mind of 3-6' of snow and the three of us chillax in the camper with a crock pot full of home made chilli. I have been waiting five days since approval and still I don't have buyers regret. I think this one just feels right.

Amanda applied for her passport today. The Caribbean is a mere 2 months away.

I have not heard much from my Dendreon family lately. I hope they have me visit again. I was so touched by the people I met and their dedication to the patient.  It's funny but I miss them. They have blessed me so much though in the last year that I can't imagine any more awesome stuff will be coming my way. I wish I could do more. I wish I could tell every man fighting this disease how amazing of a medication Provenge is.

I want every man fighting this disease to feel as good as I do. Maybe one day the truth will no longer be shadowed by the overpowering volume of lies.
How.many men will die before then.

I dont know how I got on my soap box about the merits of provenge but it is time to
close.

Enjoy the beauty of the season.
           Todd

Tuesday, September 17, 2013

Reality

Lately I don't sleep. My mind doesn't allow it. When my bladder wakes me returning to sleep is unlikely. When I do sleep it is restless. The Zytiga is causing extreme hot flashes and night sweats. I think about getting sleeping pills but I take too many pills.
    Mandy and I have a travel trailer.  We bought it new three and a half years ago.  We financed it and in all this time we have never been late. The problem with having the trailer is that we also have a boat. We can't tow both at the same time. Last weekend we went to the r.v. show and found the answer to our problems. We found a really nice cab-over camper that would pair nicely with our Dodge truck. Our credit was approved as long as our trailer has a good trade in value. We can most likely pick it up next weekend. At 1:47a.m. last night reality hit me like a truck. I may not live long enough to pay it off. All I could think about for the next two hours was how can I get out of debt. How can I provide Mandy with any kind of security if my death bankrupts her. I promised her thirty years but it has only been 87 months and I am already on Zytiga. What if it fails quickly? How many more drugs are there? The truth is that I may have made a promise that I cannot keep. I need to get out of debt but that is impossible. We make decent money but we bought so many things. I am not a fan of reality. So each night I struggle to fall asleep and hope that the alarm will wake me. It never does. I am haunted by an overwhelming sense of dread. I am not worried for my life. Although I would love to live a long life I am not afraid of it ending. My fear is for those I leave behind.
    I still have high hopes that my Provenge therapy 16 months ago will keep this crap in check for many years to come.
   I need a plan. I really need a plan. Even if I live another couple decades how much longer will I be able to punish my body doing the type of work that I do.

I think trading our trailer in on a camper is out of the question!!

I am so bummed out. Todd

Tuesday, September 10, 2013

The battle

    At the time of my diagnosis I was given a year. I fired that Doctor. Eighteen months later I was given 30 months. I fired that doctor as well. I was told by another doctor a few years later that I could not have Provenge. I fired that doctor as well. I knew in my heart that receiving Provenge was the key to any successful treatment plan. It had to be the first step. It only made sense to me. What could be more natural than turning your immune system on high to seek out and destroy cancer wherever it is in your body. It worked. It stopped the disease for 14 months and when disease progression started up again it was way slower than it was before. You see Provenge is still working and every drug that follows Provenge therapy is going to have the added benefit of a supercharged immune system to help it as well. Provenge is still working.
    We live in a day and age where for many men Prostate Cancer is a chronic disease. There is no cure as of yet for advanced disease but it can be treated indefinitely. We have medications to fight the disease but the biggest battle that takes place in this war takes place in the mind. I have said it a hundred times in the last 87 ( yes it has been that long since I was given a year to live ) months. People do one of two things when they hear the word cancer. They either put on the gloves or they pick up a shovel and start digging a hole. I hate to dig. I am a fighter. There are times when I cannot sleep. There are times that the reality that I have a terminal disease will not let go of my thoughts. Those are the times when I need more than statistics. Those are the times when my faith is tested. Those are the times I stand on psalms 103 verse 1-5. Bless the lord oh my soul, he who forgives my sins and heals me of all my diseases..
   I read an article today about Dendreon being in financial straits. I heard talks of debt, and bankruptcy, and bad business model. I don't know about all of that stuff. All I know is the stuff works and the leadership team of Dendreon needs to figure this out. Thousands of men are depending on you. I was told I had a year. I will not give up and it has been 87 months. I don't care what the street says about Dendreon. I don't care what a certain stock anylyst has to say about Dendreon. We all know it works.

Monday, September 9, 2013

An Amazing year so far

Last year on December 15th the good folks at Dendreon came to our home to produce a patient story video. It was an amazing experience for my family and I. They came with a small army of people and spent an entire day with us. The filmed, interviewed, and took hundreds of still shots.

It was so much fun and I have to admit, they made me feel like a rock star. If that would have been the end, it would have been a very neat experience but that day in December was just the beginning. A month later they flew Mandy and I to St. Petersburg, Florida where I was the guest speaker at their annual pep rally.
I sat on that stage with pictures of Mandy and I and our daughter  displayed behind me and told my story to strangers. I told them how grateful I was to have received Provenge. I told them how grateful I was to be alive. We made a lot of new friends that day. I am still in contact with many of them. Some of them I view as an extended part of our family. They know who they are.
At the end of the event I was presented with a guitar signed by all of the Dendreon employees who were in attendance. It is impossible for me to convey the depth of emotions I felt standing on that stage. I can only say that gratitude was at the top of the list. We were so sad to leave Florida and say goodbye to all of our new friends. 


After Florida I was able to visit the Dendreon facilities in Seal Beach California and Union City Georgia. I met all of these wonderful people who work every day with the sole purpose of putting the patient first. I was able to tour the facilities and see the entire amazing process of turning white blood cells into cancer fighting machines. I was truly blown away.

I am from a small town. I have rarely been outside of my county let alone travel across the country but in the last year, I have been to our nations Capital, LasVegas Nevada, Seal Beach California, St. Petersburg Florida, Atlanta Georgia, and in a couple more months we get to go on a Caribbean cruise. I have got to do all of this because of Prostate Cancer. I am soooo not worthy of all the blessings that have been bestowed upon me. I am so thankful for all the people who made this all possible. I hope I can do more to repay the kindness that has been shown to us.
   It has been an amazing year. It really has been. Somehow in the middle of all this we were able to go on vacation to northern Idaho and spend a ton of time camping and water skiing over the summer. We even took a four day long weekend to snowmobile in Bend Oregon and snow ski on Mt Hood.
 I don't know what I will do when life slows down to the pace it was before my rock star status. I honestly hope it doesn't happen for a while. I hope you have enjoyed the pictures.
I hope if you guys that have Prostate cancer become refractory that you will opt to have Provenge first. I urge all of you to insist on it. I had 14 side effect free months. These were months where I lived my life out loud and choked as much as I could out of every day before I needed to switch gears and try something else. I intend on being around for many years to come and Provenge is a huge reason why that is going to happen. Todd

Tuesday, August 27, 2013

Y.O.L.O>

Tuesday, August 27, 2013


Yesterday I wrote about slamming into the lake bank. The photo to the right was taken about a third of the way into the return trip. I made contact with earth just below the trees at the center of the photo where the lake bank is almost a perfect vertical. I know the answer is no but I can't stop asking if I will ever grow up. : ) I wonder how fast I was traveling at the point of impact. Y.O.L.O. 



An hour after slamming into the wall, still in a lot of pain, but knowing I will only have a couple more days to ski before winterizing the boat, my daughter took the picture to the left. I love to water ski. To be honest, I was really good at it when I was 16 years old. I had considered joining the pro circuit before my coach fell through the ice and drowned. I considered doing a lot of things when I was 16. I didn't do many of them. I will be 50 soon.



The water is warm for Riffe lake but here in the middle of August it has still only reached 68 degrees. In the winter the reservoir is drained to minimum levels to make room for the massive amount melting snow that will pour down the mountains in the spring and continue throughout the summer. Upstream the glacial waters are still an eerie shade of whitish green. Though the water is not warm by any means, it is warm enough to leave my wetsuit in the boat. My ski, ( a Jobe Spectra, custom fit to me ), feels like a favorite pair of shoes on my feet. It's an antique by today's standards but it's the only ski I will ever ski on. To me it's an old friend. Mandy is really getting good at driving the boat. She always finds the flat water. The sun is slowly setting. The wind has died. Sunlight dances on the water. The tow rope comes tight...... I use to ski with a half boot on my back foot. This allowed me to stand in the shallows with my ski out of the water and 20 feet of rope coiled in my hand. I would signal the boat to go and when the rope came tight I would just step onto the ski  without ever getting wet. The idea of not having to get into this cold water is appealing but there is no substitute for the control a full boot on my back foot.    .... HIT IT!!!!  The V-6 engine and Volvo out-drive come to life. I have lost 15 pounds this summer and it shows. The acceleration shoots me out of the water. Mandy brings the boat to 32 miles per hour and holds it in a perfect straight line. She really is getting good at this. I don't feel 50. I feel no different then I did when I was a  cocky 16 year old showing off and out-skiing everyone on the lake. I turn to my left  round the first buoy and cut hard to my right accelerate across the wake set up and cut hard around buoy #2. Eight buoy's, eight perfect cuts. Thirty-two miles per hour on a 58 foot rope. After that I ski another 20 minutes freestyle before reluctantly letting go of the rope. I wish I could ski more but I am tired.


Today has been a perfect day on the water. It is now time for smores and after that .....tequila!!!


That is how we spent last weekend. It was so much fun. It could have been better had my persistent cough not been driving everyone nuts. I slept in the truck one night so everyone else could sleep. As it turns out, I have pneumonia and bronchitis and after a couple days on the antibiotics and two good nights sleep I feel fantastic. I can now celebrate my low P.S.A. numbers without the underlying fear that the lung metastasis is getting worse. With the exception of the Pneumonia, my chest X-ray looked great.

    If you have been diagnosed with cancer and you are afraid, I get it. I am afraid sometimes too. You have to remember that a diagnosis of  cancer is not a death sentence anymore. Even if the cancer is
 " TERMINAL " (like mine is) there is so much life out there to be lived. Go out and choke the living shit out of every day. When it comes to cancer there is one thing to always remember.
      THERE IS HOPE!!! Todd

Monday, August 26, 2013

Im so much older than 20

I love the mtv show ridiculous. At the age of 49 I should be smarter then the people on that show but I guess I am not. I wrote about the rope swing at Riffe lake in the letting go post. Saturday I should have let go.  I misjudged my distance and was not sure I would swing out far enough to hit the deep water so I held on for the return trip. Mistake.....big mistake..... huge!!!
I slammed into the side of the cliff full speed...chest first....and bounced down the bank to the shoreline. The segment "mansquirrel comes to mind.

Once again there were no video cameras. My daughter and her friend were too busy laughing and sweet wife was having a bought of tourhetres syndrome as she swatted a small swarm of overly curious honeybees that were convinced she needed pollinated. I was wearing a wet suit and a life jacket so I consider myself lucky not to have crushed my chest.. I still think I have some cracked ribs.
   I am at the doctors office this morning. My cough has worsened and I now have a fever of 100.5 average. I saw the chest xray. God I hope it is only pneumonia. The slides were kind of blotchy.
    My daughter says....
Y.O.L.O. ( you only live once)  I think it is true but be prepared for a little pain when you play like a teen.
The nurse just did my vital's. He was impressed. I sure get tired of seeing the Doctor.
    I will try to post some pics from the weekend later today. Y.O.L.O. Todd

Friday, August 23, 2013

Blessings and Tragedy

I have not written in over a week. The time passed quickly. It was a week of blessings and tragedy. It started with the arrival of our friends/family (Tony and I were separated at birth) from Las Vegas. We had an amazing weekend with them that made the prior two weeks spent painting and donning the guest room with new linens and curtains completely worthwhile. Now it is no longer considered the guest room but is now Tony and Ruthies Room. Looking back on the weekend it is amazing to me how two people who were strangers 6 years ago can be soooo much alike. It was with a heavy heart that we watched them pull away from the drive to head south. It was short lived as a mere hour later I was sawing logs. They wore us out.
  Monday at work was such a shock to my system I opted to play hooky on Tuesday to go salmon fishing with my brother and dad at bouy 10 near the mouth of the Columbia river. The fishing trip started great. I brought a 10 pound coho into the boat 20 minutes into the trip. I had to throw it back as it was a wild fish but still it was a very good start. I never got a chance to catch another. A phone call from my mom cut the trip short.
   Monday evening a 15 year old girl and her 18 year old sister were hit by a car while walking a dark, winding, country road. They were dressed in dark clothing. The younger sister died at the scene. Alcohol, drugs, or speed, were not factors in the accident. The driver did not see the girls until the moment of impact. He was blinded by oncoming headlights as he crested the hill. The girls were in the middle of the road on the other side of the hill. They never knew what hit them. The driver was my nephew. He is 22 years old and feels his life is over. The girl who died was a very popular athlete in our small town high school as well as an honor student and class president. Her father is the maintenance planner for the paper machine that I work on. I live in a small town.  Such a tragedy.  I fear the healing will be painfully slow. I wonder if it will ever come at all.
   Yesterday I found out my P.S.A. feell by 75% to 5.62 in the two weeks since beginning Zytiga.  The side effects are rough on me. Weight loss, loss of appetite,  nausea,  extreme fatigue, and a hacking cough.
   I am alive. It appears I will be for some time. Life is weird. Blessings and tragedy.  The moments pass quickly and whether we know it or not the end is just over the hill. I am thankful for my life and my many blessings. I hope I never take them for granted. My heart is filled with sadness for my nephew and the family mourning the loss of their sister and daughter.
   Life could end tomorrow.  There us no guarantee the breath I am taking wont be my last. I hope we all can keep from wasting this beautiful gift. When we do, we dishonor those who were taken from us far too early. :-( Todd
  

Wednesday, August 14, 2013

Saved by Jury Duty

Yesterday I woke up at 4a.m. and was at work by 5:30. I worked from 5:30 to 11:30 and went home for a few hours of sleep. I returned to work at 5:30 p.m. and worked until 3:45 a.m. It is 7:25 a.m. and I have yet to go to sleep. Doesn't my employer realize I have cancer. I never thought I would be so happy to have jury duty but I am thrilled. I don't have to go back to work. I get paid for my time off and I get paid by the court. My plan is to be home and headed for dreamland by noon. That it for today, I am beat, Todd

Monday, August 12, 2013

Letting go

Five miles west of the town of Mossyrock WA. is Riffe lake. The lake is named for the town that was covered with water when they closed the flood gates of Mossyrock Dam. In times of low water you can still walk the mud covered streets and see the foundations of the long forgotten homes and businesses. The picture to the left was taken yesterday at a hidden cove half way up the lake. In order to be certain of a deep water landing you must let go at the very top of the arc. It equates to a 3 story drop. Fear makes it difficult to let go but if you don't then things can get really ugly. My life is a metaphor.

I think one of the most important things I have learned in dealing with this disease is to just let go. We can only control so much. We can try to hold it all together but it can really get messy if we try to control too much. I am having a hard time with Zytiga. I feel nausea all the time. I have so much congestion and I just really feel icky right now. I hope it passes but it is out of my control. In this case, like on the rope swing yesterday, the wheels have been set into motion and I am no longer in control. I choose to let go and enjoy the ride as best I can. I hope I feel better soon. Todd

Friday, August 9, 2013

Day two

I love the still of morning just as the the first rays of light breach the darkness. This is my time. Mandy and Michaela are fast asleep. The dog lies in my lap for his morning scratch and everything is right in the world. There is no cancer in this place. There is only the promise of a new day and of course there is coffee. The perpetual kaliedescope of color dances across the sky. I feel young. God is truly an artist. The first birds begin their chorus as others join in the celebration of life. The mist rises from the water. In the distance a duck takes flight. I think heaven must be like this.
     I use to take these moments for granted as I believe most of us do.
We are so busy. Our lives are consumed by so many things that really do not matter. Were it not for Mandy I might still be missing these moments. Through her eyes I am seeing it all for the first time. It is such a contrast to the place I will be in less than an hour. Where I work there is no silence. It is so loud that you feel it rather than hear it. The forests are ground into chips and cooked in a toxic soup until they are nothing but pulp. The temperature can exceed 130 degrees. The smell of chemicals and the pulping process permeates everything and stays with you long after the day is over. When my workday is finished I can't wait to be home.
    I feel good. I was told Zytiga works quickly. The pressure in my chest has eased. My cough is no longer dry and unyielding. This morning my hip popped back into place. The only side effect I have noticed is a metallic taste in my mouth. I slept soundly. It's Friday. Life is good.
    This weekend Mandy and I will get the house back together. My band will play at the relay for life and I will be the guest speaker before the luminary lap. I still have no idea what I am going to say. Sunday we will take the boat to the lake and spend the day on the water. Next weekend we will have house guests. The remainder of the weekends this summer will be spent camping and boating. School will start soon and life will downshift to a slower pace. The days will grow shorter and the smell of wood smoke will be in the air. I feel really good today. Happy Friday. Todd

Thursday, August 8, 2013

Here we go

5 a.m. Thursday August 8th. I just swallowed $168.00 worth of Zytiga and prednisone. I thought viagra was expensive.
   It was a sleepless night filled with what if's again. I am not looking foreward to work. I wonder if I can find a place to nap. " the coffee is done"  I am so tired. I feel like I am getting sick. I am congested and my cough is really annoying. Just ask my wife.
    I am so angry at someone who calls himself a Christian that even though I want prayer I cannot ask for it. Last night I could not meditate on psalms 103 verses 1-5. Those verses are my mantra. My mind is foggy. The voice of the unknown quiets not. Please let this medication work for a long long time. Please let the side effects be minimal. Please let my body tolerate the medicine well.
  Last night I kept waking up with the trial drug XL-184 on my mind. It is a drug approved for thyroid cancer that works on prostate and other cancers.
    Why am I seeing the glass half empty. My glass is overflowing. 7 years 2 months and 2 days into this journey and I have only exhausted 1 treatment option. (Cassodex)  I am still on Lupron and Provenge is forever. "Stop worrying dummy"
    I took my first dose of Zytiga 38 minutes ago. I feel good. I get to eat in 25 minutes. So far so good. Have a great day everyone.  Todd

Wednesday, August 7, 2013

Same road....new journey

Today I begin a new journey in my battle with prostate cancer. I spent two hours with my oncologist yesterday. We discussed Provenge and my rising psa. His opinion is that the drug is still working. He is of the opinion that the drug will continue to work for the rest of my life. We were both discouraged by my rapidly rising prostate-specific antigen level. Psa. No matter how you look at it a rising PSA Is indicative of Disease progression. We both felt that A change in treatment was in order. Today I will pick up my prescription of Zytiga and prednisone. Today I will begin a new journey in this fight. I feel as though the odds are in my favor and that this new drug will do as it is advertised to do. My question is " why am I so sad"? Why is it that in my heart I feel as though this is the beginning of the end? I am usually so positive. For some reason my kick ass and take names attitude has taken a hit. It appears that there is a chink in the armor. I hope that this is a temporary condition. I hope that once I have started on this new drug and see how well it works that's my attitude will rebound. At present this sadness is overwhelming. I love my life. I lead a very active lifestyle and I am NOT ready for that to end. Will the side effects of the new medication be debilitating? Will I still be able to ski and water ski and hunt and fish and hike and kayak? Will I still be able to mountain bike? Will I once again lose my recently found libido? Will I still be able to work effectively at the job that provides the lifestyle we lead? I have all of these questions and so many insecurities about our future . I feel lost at sea battered by wind and wave. I know where my safe harbor lies and yet it remains out of reach.
   Today I am at work. I am 3 hours into my day and yet I have accomplished nothing. I wish the day would end. I wish I could just be home. My doctor told me he wished with all his heart that I didn't have to work at a place like this. His opinion is that my work place is a hostile environment. He feels that I am exposed to too many toxins and chemicals on a daily basis. he is not surprised that I have a permanent cough. he feels that although I have lung metastases they are too small to be causing respiratory problems. My reply to him was that may be true but how can I justify leaving a job that pays as well as mine does. I explained to him that I would like to retire on a disability. He only laughed. He said that people would take one look at me and there was no way that I would qualify for Social Security disability. bummer. Stage 4 terminal cancer and I don't qualify for disability. and yet there are people out there who screwed their brain up on drugs and they qualify as disabled. What a joke. I would laugh but it hurts too much and I am quite certain that it would send me into a coughing fit. I have so much more to say but at the moment my thoughts have become muddled. I hope that those of you who read my blog are enjoying it. please feel free to share it with anyone you think it might do good. Todd

Monday, August 5, 2013

The known and the unknown

Friday morning I got my test results and the numbers were way up. My P.S.A. more than doubled in the last two months since going off the cassodex on June 1st. I am currently at 22.25. It was deflating to say the least. I expected a drop in psa. (Did I really?)
I have ignored mild discomfort and a worsening cough for a month now. The proper verbage is I had hoped for a drop in psa but I really expected a jump. I did not expect a doubling. Friday night was the first nigbt in 7 years that sleep eluded me due to my mind pondering my mortality. It was the first time in years that I wondered how long I was going to live. I told Mandy yesterday that I was not worried about how long I would live but I wonder how long I will be able to live the life I love. I am sad. I spent the weekend watching Mandy descend a little deeper into the pit of despair. I am so sad for her.
    All of this said we have a plan. It looks as though Zytiga will be in my future. I worry about taking prednisone and what the side effects will do. I wish I could retire. 60 hours a week working in a hostile environment is taxing my immune system but seeing as I am not independently wealthy nor can I support my family writing I must continue to work. We have a saying here in the hell where I work. WTYD. Work Till You Die. I must work until I die. The only life insurance I have is that which is provided by my employer. I will not allow Mandy to lose me and the only true home she has ever known.
    Sometimes it sucks to have to be strong. I tell Mandy always, (it will be okay.... I am not leaving you anytime soon) I hope it's true. I promised her 30 years. Failure is not an option.
    I see my doctor in 8 days. I will know more then.

     I was writing this entry from my phone at work and I had to stop writing earlier. I just received a call from my doctor and he can see me tomorrow instead of next Tuesday. I am really happy about that. Sitting idle is hardest on me. I need to have a plan of action. I need to be working toward a goal. I hope that I can convince my doctor to prescribe the booster dose of Provenge. I still believe in spite of a rising P.S.A. that Provenge is my best bet for a long life. Provenge gave me 14 terrific months before disease progression. I was hoping for more but my true hope for Provenge is that it seems other drugs that follow Provenge work better because of it.
    I wish I could plan my life. I wish I could say for certain that I am going to be around in 10 years. I can only have faith that it will be so.I wish I had been better with money. I wish I had not lost everything in my mid 30's I wish I was out of debt so I could retire early. I wish I could take the fear and pain that my wife feels daily away. I wish I could make it better when she cries in her sleep. I wish I could give her security. I am so afraid I am going to die and leave my wife a quarter of a million dollars in debt. I am so afraid she is not going to be okay if I die. I am not afraid of dying. My only worry is for the hearts that are sure to be broken when I must go.
   My daughter stopped by with two of my grand daughters yesterday. They are so beautiful. I love them with all my heart. I need to be here for them. Who is going to teach them to fish and hunt and water ski. Who is going to be there to listen to them when they need to talk to someone other mom and dad. This disease is not fair. There should be rules that it has to follow.

     I want to say thank you to all who read this blog and for your many comments. My sole purpose in writing is to bring hope to men who must follow down this road and to the people who love them. Todd

Thursday, August 1, 2013

The Waiting

From the time my blood is drawn at the lab until the test results are available is usually less than 24 hours. Oh how I hate those 24 hours. They seem to drag on and on. Nothing however is longer or harder on my nerves than those few minutes it takes on the phone to get the results.
    It is 11:30 p.m. August first and although I woke up at 4 a.m. today in order to be at work by 5:30 I am still wide awake. Today was my daughters 27th birthday. I wish I was 27 and had never heard of Prostate cancer.
   As I sit alone in the dark I am wondering what tomorrow will bring. If my numbers are down perhaps all of the phantom pains in my legs will go away. If they are up then what will the next step be. Will I go on Zytiga or mdv 3100. Will I still be able to work while taking those drugs. Will the next drug work as good as the last ones. It is going to be a sleepless nigbt.
   This really is the hardest part about this disease. I live life 3 months at a time. When I get my results back tomorrow, if they are good I won't think about cancer much for three more months. My wife will worry more than I do. At least she can sleep. Seven years one month and twenty five days since diagnosis and I still get uptight when I get blood work done.
   I am going to be 50 in three months and 18 minutes. I didn't think I would make it this far. I will dance at my grand daughters weddings. I will hold my my great grand babies someday. It is so tiring to always be strong. I am tired. It is time to sleep I think. Good night.

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