A new provider

  On July 25 I will visit Dr. Brendan Curti at Providence Cancer Center in Portland, Oregon. It will be the first time I have seen a non Kaiser Permanente Oncologist since my diagnosis. Throughout my treatment I have been limited to seeing a general oncologist. The only non-Kaiser Doctor I have ever seen was when I took a trip to Las Vegas to see Dr. Vogelzang.

   The doctor I see July 25 is not only a specialist in the field of Prostate Cancer but also research physician in the field of immunology. I am excited. 

   We returned from our annual Independence Day vacation on the 13th. It rained at the lake so we packed up after the fireworks and headed to eastern Oregon for a few days. We had a wonderful time at Prineville reservoir. Our dog, Brody, was not a fan of the high desert heat however.

  After a few days skiing and playing in the water we once again packed up and headed to the barn. We opted for a route we had never travelled. We headed east through the town of Sisters Oregon and over the Santiam Pass. Once back on the west side of the Cascade Mountains we stopped at Siver Falls for a 10 mile hike. 

    We got home Saturday evening and packed a bag for a 2 night trip to Southern California where Mandy and I made our mark on Malibu.

Our moment was washed away by the waves a few minutes later. Only the photo remains.

   How quickly the sands of time fly by. One day there will be nothing left to show we were ever here. We are born, we live, we die. When we are gone the memory lingers for a while and then it is gone as well. All that matters is how we lived and what we left behind. 

   The waterfalls we saw have been flowing over the rocks for thousands and thousands of years. Their song echoes through the valley. Beautiful! Cancer can wait!

   I see my new Doctor in 5 days. My goal is to go off treatment. If the opinion of Dr. Curti is the same as my current Oncologist I will get the Lupron shot I am 3 weeks late for. 

   I promised Mandy 30 years. I will do whatever it takes to keep my promise.

   

   

10 YEARS.

   Wow, today is my 10 year anniversary since my stage IV diagnosis. It seems like a long time but in reality it has been just a moment in time.

   There is a smidgen of Irony surrounding my diagnosis day. My doctor called me at 10:00 a.m. On 6/6/6 to give me the news. It was a crappy day to say the least. Those early days were hard for everyone. My kids were crying, Mandy was crying, and my parents were crying. It is a distant memory. It no longer seems real to me.

   I am still here. Cancer is an on going part of my life. It will be for the rest of my days and years. 

   In ten years I have learned a great deal about this disease and this post is the summation of my experiences intended to bring wisdom to those who must follow in my footsteps. It is a list of special rules to help you survive the journey. 

Rule #1 Forget about dignity.

  Unfortunately the easiest access to the prostate is through the back door. I once considered getting a tattoo on my derrière that read exit only. It was a joke back then. It amazes me that those things we joke about in life are the things that come back to haunt us. To go along with this rule I recommend establishing a personal relationship with your urologist. It makes those quad-annual violations much easier when it is somebody you know. I once pretended to read a love note to my Urologist during an exam. After the exam he chuckled and said, "I have been doing this so long that I have actually received letters like that"

Rule #2 Avoid chick flicks at theaters.

   The truth is that testosterone makes us men and although the lack of it does not make us women, it does put us in much closer touch to our feminine side than any of us have ever wanted to be.  I have shared this before but my daughter once revoked my man card for crying at the Hannah Montana movie. 

   After 10 years on hormones. I can now enjoy action movies and chick flicks with equal enthusiasm but being in a theater watching a chick flick presents its own unique challenges. It really sucks when the movie is over and all the "dudes" ( the ones who got drug to the movie by their wives and girlfriends ) are staring at your red puffy eyes wondering who let the sissy boy in. It's harder yet to explain to the guys at work why The Notebook is #3 on your all time list of favorite movies. It's okay to like chick flicks, just don't watch them at the theater or tell the guys.

You have to admit, that's good stuff

Rule #3 Use cancer to your advantage

  Over the last 10 years I have used cancer to get out of attending weddings and non-vital family functions. It has gotten me out of seatbelt and speeding tickets, working night shift, and working overtime. I have used it as an excuse for cancelling reservations and airline flights after the minimum cancellation and have always gotten a full refund. 

  Once, our dogs were picked up by the dog catcher and I used cancer as the reason I didn't bail them out for 3 days. We live in a rural area and it is not uncommon for our dogs to go unseen for a few days. I still had to pay an impound fee but they waived all the boarding costs. 

   It works well with our wives too. We call it GFMPH. Good for my prostate health. It goes something like this. Honey, I really think that having a boat would be good for my prostate health.

  Honey, I really think that having snowmobiles and spending winters in the mountains would be good for my prostate health

  We got a bummer of a deal guys. If you have to have this disease then make it work for you. A note of caution however. This technique does not work with game wardens when you are fishing without a license!!

Rule #4 Find the humor.

   The old saying goes like this. Laughter is the best medicine. As it turns out, it's true. Twenty seconds of gut busting laughter does as much good for your cardio vascular system as a 15 minute workout. It builds core muscles and helps with pulmonary function. It also just makes you feel good. We have a lot to laugh about if we choose to see it that way. 

Rule #5 Live your life out loud.

 

    You have cancer. It very well may shorten your life. The days of putting off until tomorrow are over. Tomorrow may never come. We still have to live within our means. Living loud does not mean that we have to spend a lot of money. My first taste of living loud happened the day I jumped from the bridge 50 feet above the Toutle River. It's something a lot of people did in high school but I was always afraid. I stood on that bridge deck looking down at the water below and it occurred to me that I no longer had anything to be afraid of. So I jumped! Living out loud simply means putting an end to doing things other people expect you to do and start doing what you want to do. It means going out and making new friends and spending time with old ones. It means taking that vacation you always want to take. If  means not being held back by fear. It means loving deeper. My grandfather used to order dessert first. His logic was simple. I'm 93 years old. I could die before I finish my meal. I want to make sure I get dessert. I choose to follow my grandfathers example. It's time for the good stuff. The first 40 years of my life I count as wasted. I always thought there would be more time. .I will no longer waste a day. When I die I want to come sliding through the gates of heaven beat to crap gasping for breath and proclaiming damn that was a hell of a ride. I plan on being here at least another 20 years but between now and then I will do my best to make every day count

   

This chapter is over

   Yesterday we drove 6 hours arriving at EWU at midnight to watch our daughter compete in the 2B State Track Finals in what would be her last high school sports competition. Her relay team took 3rd in districts a week ago. We had high hopes for a podium photo op. Sadly it was not to be. A bad hand off on the 3rd leg cost too many valuable seconds. They took 4th in the preliminary heat and 9th overall missing finals by less than a second and a half. High School athletics are over. Mandy and I are heading home by way of an overnight stop at a favorite vineyard.  We have had a good cry. Graduation is next Saturday completing this chapter of our lives together. It has been a wonderful, exciting, frustrating, and sometimes hilarious 12 years. Michaela has been the center of our world. She has hung in there despite the trials of small town politics. In Toutle you are an outsider until you have a road named after you. She never gave up even when not having the right family name meant less playing time or being overlooked because some other girls mother played for the coach 20 years ago. Not only did she not give up but she excelled and proved her metal. God we are proud. Even when she was treated like an ousider she showed up everyday. 

Varsity volleyball 4th in state 2015-16

 Varsity basketball 4th in state 2015 Toutle lake high school!

District track finals 3rd place. 4x200

   Today a new chapter of our life begins. Mandy and I have a void of excess time and energy to fill. For the first time in our life together it will be just the two of us. Today Mandy drove the camper for the first time as I rode shotgun. She crossed the Columbia River at Vantage during a high wind warning. It was a white knuckle ride. Prior to the State Finals we found out they only took cash at the gate. While I sprinted across campus to the ATM and knowing Michaelas event was about to start, Amanda just got in a crowd and walked through the gate without a ticket. I am so proud. I am going to like this woman.

   I was a part-time dad when my adult children were in high school. I missed a lot. Having this opportunity to raise Michaela has been fulfilling and actually gave me a shred of compassion for my ex-wife. Teenagers are a handful.

   Cancer can kiss my ass. My life is full and wonderful. I'm not leaving until I am good and ready or until God tells me I am good and ready. Mandy and I have memories to make. We started as soon as we left the State Finals. We told Michaela goodbye, jumped in the camper and headed to a favorite vineyard 3 hours away stopping only to explore a couple other vineyards along the way we had never been to. We shared a bottle of wine as the sun set and then headed west on a mountain pass we had never travelled. We stopped and camped along the American River and fell asleep to the music of the water singing as it tumbled through the gorge. 

 American River Chinook Pass WA.

Naches Hieghts winery and tasting room, Naches WA.

We are home. Michaela will be home tomorrow. We will spend this week prepping for graduation. Michaela has admissions testing on Tuesday. Life is good. 

  Tonight we will raise a glass to  wonderful memories and new beginnings. Yolo

State track, Graduation, and Disneyland.

   I met my daughter when she was 7. Her blonde hair, blue eyes, pouty lips, and an independent disposition made for a mix of one part nitro, one part T.N.T. and a small nuclear bomb added for good measure. She was stubborn and opinionated from the Get-Go. Love love love. It is hard to believe that Tuesday was her last day in high school. 

  Tonight Mandy and I will hop in the camper to take the 6 hour trip to Eatern University in Cheney, WA. to watch her compete in her final sports event. Time marches on!

   To say that life is going to change would be an understatement. For 6 years our life has revolved around Michaela and athletics. Summer basketball, summer volleyball, insanity summer drills, volleyball, basketball, track, district and state competition has kept us on the move all but a few short weeks a year. It will end on Saturday. I don't know how I feel about that. Perhaps melancholy is the most suitable word and yet it is seasoned with happiness and pride.

  I am very proud of her. She was never a star athlete but she made it to State Finals in 3 sports for 3 consecutive years. She was never an all-star scholar but this year she mad the Honor Roll both semesters. Life is going to change. After all, life is about change isn't it?

   Michaela graduates next Saturday. Amanda will cry. Most likely I would cry as well but I am bringing the Naster-Blaster. If you don't know what it is you should google it. I have found it to evoke chronic laughter whenever it is used.

  When my eldest son graduated I was poor. When my eldest daughter and my youngest son graduated I was a junky. I was also still poor but for different reasons. When Michaela graduated June 4th we are sending her and my eldest daughter to Disneyland for a little sister bonding time. It feels good to be able to do something like that for them. 

  I am so grateful for these last 10 years. My life has changed. It became the life I always wanted. I am thankful that I got to experience one of my kids senior year. I got to do all of the things I missed out on when my adult children were in high school. My life is amazing to me. I can only guess what it looks like to those who view it from a distance. What does it mean when you get to watch all of your dreams come true. 

   When I began writing it was by suggestion. "Tell your story. Men need to hear it" Thank you Andrew:-))) Writing this blog has given dimension to grateful. It has opened my eyes daily as to how wonderful my life really is. Some people define success by their financial prosperity and a country club membership. Our bank account will never afford us luxury by that standard but make no mistake, Amand and I are rich. Friendship, love, adventure, family. There is nothing more we could ask for.

To break or not to break???????

    I am almost out of pills. Kaiser called yesterday to inform me I was late for my lab work. I have yet to schedule an appointment. My Lupron shot is due in a month. I am in no hurry to schedule an appointment for that either.

   I need a break. I need some testosterone. I need to feel strong. My medical team is in complete agreement with each other. They say it is too risky for me to go off medication. They also said I was going to be dead 9 years ago. Defying them was easy when it meant outliving their expectations. Discontinuing treatment is a whole lot harder. What would a rock star do? 

I don't know. I don't know what I am going to do. I am afraid to stop treatment but I have a 30 year plan. I am only a third of the way there. Will the long term effects of treatment become more of a problem than the cancer? Although I have yet to fill my Zytiga prescription, I did have my labs drawn last Friday. More than likely I will fill my prescription this week. It took 7 days to realize that I am not so stupid as to play Russian Roulette with cancer. I am doing well. I tolerate Zytiga well. My liver and kidneys are showing no sign of stress from treatment. I am not a rock star. I am just a very blessed guy. Maybe a holiday wouldn't hurt me. Maybe it would help the cancer re-establish a foot hold. 

   Our daughter graduates in two weeks. We are sending her and our eldest daughter to Disneyland for 4 days. Yesterday our granddaughters were up for a visit. Without Zytiga I wouldn't be here to see it. Life is good. Todd

The good stuff

  It has been almost 6 months since dad passed away. It has been a hard six months. My mom and dad had been together since my mom was 14 years old and they married shortly after she graduated from high school. She has lost her very best friend in the world. When my band formed in 1996 my brother played bass and my dad played rhythm guitar. Although dad quit playing a couple years ago losing him kind of took the wind out of our sails. We have practiced a few times since his passing but it's hard to find the motivation to book a gig.            Dad only lived 4 months from the time he was diagnosed. He never had the opportunity to take a trip or do any of the things he would have liked to do. The slope was slippery and dad couldn't find his footing.

Taken 6 months before he passed! We love you dad!! 

   I love the song "The Good Stuff" by Kenny Chesney. It is the story of a guy who goes to the bar after his first marital spat and asks for the good stuff. The old bar keeper pours him a glass of milk and they sit and chat about all the good stuff in love and life. The song hits home at the moment and I am somewhat teary eyed as I write.

   I have said many times that this disease changed my life for the better. The truth is that this disease caused me to be like my dad always was. My dad was an everyday hero. He worked hard, provided for his family, and he was always the guy who would answer the phone at 2:00 a.m. and be there for a friend. They just don't make men like dad anymore.

   It has been 9 years, 11 months, and 7 days since my diagnosis. I don't often talk about my life before cancer. The reason for that is there is really not much good to tell. Four years prior to my diagnosis I had lost everything to drug addiction. A three-year addiction to methamphetamine caused me to lose my home and everything I valued. 10 months prior to my diagnosis I was living in somebody else's garage. During that dark time in my life I thought I wanted to die.  I even attempted suicide. Oddly enough the day I tried to kill myself, August 20, 2005. Was the last day I ever used. A month after getting clean I could afford to activate my cell phone. After activating it I changed my voicemail. It went something like this. "

Hi, you have reached Todd. I have been making some changes in my life. If I don't call you back, consider yourself part of that change!"

   My path to the good stuff started August 21, 2005! It has been nothing but good stuff ever since. 

   I met my wife in December of 05, the weekend after my birthday. She knew the day we met that we would be together. It took me a couple months longer to figure it out. I have never claimed to be bright! Our life together is the good stuff that I speak of. It's not always easy. Cancer took away a great deal of out intimacy but not all of it. Our life is filled with friend, family, and adventure. We collect memories instead of collecting things. I am blessed that even after 10 years of cancer, I can still go to work every day. Our jobs provide us the ability to travel wherever we want to go. It's a wonderful life. 

   Often when faced with darkness and unable to see the light ahead, despair causes people to lose hope and give up. It happened to me. I gave up. Had it not been for a guardian angel I might not be here to experience the blessing my life has become. It just goes to show that even during the darkest of nights, the sun  will rise in the morning. We only have to hang in there until it does.

There is hope! Hold on to the good stuff!

  

   

Ultrasound guided transrectal prostate biopsy

  Wow! Say that three times real fast. The title of this post should actually be "you're going to put what where?" The prostate biopsy is no picnic. Looking back on those early days it was, for me at least, one of the very lowest times of my life. There is no doubt that having CT scans and bone scans were intimidating but the biopsy made everything real. I have only experienced one biopsy and I hope that I may never have to experience another one. This post is for guys who are having the procedure done and are curious. As I have zero knowledge of anyone else's procedure this will simply be an account of my own.

Prior to the procedure I was instructed to not eat and was given something to evacuate my bowels. I was also given some serious antibiotics.

   In my case the biopsy was an "in-office" procedure. I arrived at my urologist at approximately 9 AM. After his medical assistant checked my blood pressure, weight, oxygen and temperature, I was instructed to undress from the waist down, lay on the gurney, and cover myself with a sheet. A short time later, my urologist entered with two young nursing students and the procedure began. I was instructed to lay on my side and pull my legs up toward my chest. My uro inserted the probe into my rectum and began to move it around while explaining what he was seeing on the monitor to the nursing students. Occasionally I heard a clicking sound as the needle removed core samples from my prostate. It was uncomfortable and sort of nauseating but not what I would call painful. It was also the most humiliating demoralizing experiences of my life. Tears streamed down my face and there was nothing I could do to stop them. The entire procedure lasted about 15 minutes. When it was over I dried my eyes, cleaned myself up, and got dressed. I experienced blood in my urine and stool for about a week after. I have heard of some patients being put under anesthesia for their biopsy. I was not so fortunate. If I knew what to expect I would have requested it. Quite honestly it was the worst experience of this entire 10 year journey but it was  quick and reletively painless. Good luck guys. I hope this post helps. Todd