Getting it right!

   I have been peeling the metaphorical onion the last few days. Discovering truth is a painful process. Publishing the filleted pieces of my life is even harder. 

   I have 2 daughters whom adore me. I have 2 sons as well. One adopted and one from out of wedlock born to my high school sweetheart. My relationship with both is sub-par. My adopted son rarely speaks to me. My biological son does not share my name and our communication is limited. His wife does not like us. Sleep was difficult last night as layer after painful layer of the truth was peeled away. 

   People who have met me over the last 10+ years, think pretty highly of me. I am well liked within my social circles. A lot of the reason for that is due to the profound effect this diagnosis has had on my heart. I am a better man, a better husband, and a better father. I am also a better grandpa.

   I haven't always been this way. Two divorces had left me bitter and angry. I will never understand why people who had promised each other forever and loved each other do their best to hurt one another when it all unravels. 

   We go through life in anticipation of tomorrow. Tomorrow is not a promise. To echo a previous post, we only have today. 

   

Christmas Time

   I love Christmas. I always have. I love giving of myself. Mandy does as well. Last Christmas was one of sadness. Dad had passed away just a few short weeks prior. Mom was devastated. We all were. I think about last Christmas quite a bit. Having cancer brings a greater appreciation for every day but especially those special days spent with family and loved ones. This year will be the first Christmas in a long time that most of my family will be home and will be spending it at our home. I am so excited. We see two of our granddaughters quite regularly but we have not been able to spend more than a few days in the last few years with our other three granddaughters. This year I thought they will be spending Christmas Eve with us. 

    I have done so well in my fight with cancer that my kids have a hard time seeing me as a cancer patient. I'm healthy, I'm out going, and I seldom talk about this disease with them. Sometimes I even forget that I have cancer.

    I wasted a lot of years and my kids were younger. Those who have journeyed through my blog in its entirety know that I made a mess out of my life. Cancer, among other things, changed hat. It helped me to realize what was important. It helped to make me a better husband, father, grandfather, and friend sometimes I wonder if things would be different had I not have gotten sick. Would I be the person that I am today? I counted as another blessing having this disease has bestowed upon me.  never have this gift. They live their lives thinking that everything is great and then one day it ends. Cancer gave me 10 1/2 years and counting to get it right. I'm not there yet! I still have a long way to go. My son spends a lot of time living in the past. I often wonder if I will ever get through to him that the past can't be changed. We have today. That's all that we have. 

   My son and granddaughters again did not make it up to our home. Their gifts are still wrapped and under the tree. Each year it is the same. Sometimes Christmas can be a real bummer

The Path

A chill surrounds I am warm

Embers burning 

Warming

They follow 

Earth, cool beneath me 

The air is still

Clear sky blue

my mind

Days behind and before numbered

Joy pain sorrow regrets

Here there is peace

I will stay

Tomorrow unpromised

Yesterday gone

Today is all we have

Live

The path calls 

Whispers gently 

My name

I must go

It's not enough

    I turned 53 yesterday. The day before that I shaved off my snow white Movember beard. It was good to see my face again. It may not be the best looking face in the world but it sure beats the Papa Smurf look I have been sporting for a month. 

   I know how blessed I am. Each day is a gift and I have enjoyed many more of them than the medical community every thought I would. A man who has been on Lupron and other androgen deprivation therapies should not be able to function in the bedroom but I can. Sometimes, even without prescription assistance. 

It's still not enough!!

   Mandy is no different than any other woman. She wants to be wanted. She wants to know the man she love desires her. She tires of the role of initiator! Mostly she is disappointed, frustrated, and hurt! It's a good thing she is still in love with me. 

   I love my wife. I adore her!! To me, there is no other in this world who could complete me the way that she does. She and my children are the reason I live but she comes before all others. When she is happy her eyes can light the darkest night. The best part of any day is seeing her smile. 

  Lately I see that smile less and less. Often when I look in her eyes I see only hurt. Resentment surely cannot be far behind. It's not enough that I have the ability to make love with my wife if I never make it a priority. How can I make something I rarely think about a priority? 

   Mandy and I share a love that is rare in this day and age. She is my best friend. No matter how angry we get (it doesn't happen very often) with each other, we both know there is nowhere else we would rather be.  Love songs are written about the emotions we feel for each other. Love stories are about us. Wouldn't it be wonderful if I could demonstrate the love I feel in my heart for her with the passionate hunger she needs to validate that same love she feels for me.

   Prostate cancer is a thief. It steals from both Husband and Wife but it is the Wife who pays the price. She is the one left to feel empty and abandoned. Love truly is wasted on the young.  Each day I pray for a cure for Prostate cancer. I pray not for myself but for the sweet girl who has paid the price of my disease. Prostate cancer has changed my life and in many ways I am a better man because of it but the blessings will never overcome the sadness I see in the eyes of the woman I love.

   

Holidays in the abstract

  Thanksgiving is tomorrow. I have so much to be thankful for. It is 10:00 pm Mandy is asleep on the couch. Michaela is watching her favorite show. Every 10 minutes or so the show breaks for commercials announcing Black Friday deals. They use to open the stores at 5:00 a.m. on Friday. This year they are opening the doors at J.C. Penney at 1:00 p.m. Thanksgiving day. Macy's follows at 5:00 p.m. Really!!! We are suppose to be celebrating a day of thankfulness with our families and corporate America  is asking us to sell our time with our families to save a few fucking dollars. I am filled with disgust. 

   I am terminal but I am lucky. I know what is important in life. When will enough be enough. When will we stop buying into these lies. Is a few hundred dollars really so important that we sacrifice precious time with the ones we love. 

  Mandy and I have participated in Black Friday 2 times in the last 12 years. The first time was prior to our first anniversary. After staying awake until 1 in the morning we woke up at 4 to make it to the mall before 5:00. It was a miserable day. The second time was a few years ago when Black Friday began at midnight. It was another miserable night and the following day wasn't much better.

   Tomorrow we will sleep in. We will have breakfast as a family. We will prepare dinner together. We will share a feast together. We will enjoy our time together. We will put up Christmas lights over the weekend and prepare for our annual Christmas vacation. We will be together and we will not be fighting crowds at the mall. I feel sorry for those who still see themselves as immortal. They are missing so much.

We get to eat this year

 

   Before I begin, I must apologize for not writing in almost a month. I actually started to write several times but the blogger app on my phone would not work. Tonight I upgraded to a new app  so hopefully I will be writing a little more consistently.

  Elk season 2016 was a huge success. Not only did I get to hunt with my daughter for the first time but I also got an elk.

 

     Mandy was a vegetarian when I met her. 

I have always been more of a meat and potatoes kind of guy. The reason for her animosity toward meat was her disgust at the treatment of animals on factory farms. We found a compromise in eating wild game. In our home, vegetarian is "Native American" for Bad Hunter. This year we have meat.

   I love eating wild game and wild caught fish. Elk meat has no antibiotics and no growth hormones. It is lean and is a lot better for your health than USDA approved beef or pork. 

    So far so good on the cancer front. My blood work is due soon and I will share the results when the labs come back. 

   Thank all of you for reading my blog. I am honored. Todd

My First support group meeting

  Living in a small town has many benefits but also some drawbacks. For instance, there is no such thing as date night without a trip to the supermarket. Sometimes I relate to the mountman. "Heading into town for supplies!" It's not that extreme but each trip to town has to be a multi function event. Another drawback is the lack of human support when dealing with a cancer diagnosis. There is no such thing as a prostate cancer support group in Toutle. I believe the closest support group to me is in Olympia sum 75 miles away.
  Tuesday last, I made the 100 mile trek to Tacoma to attend an "Us Too Prostate Cancer Support Group". I was invited to the meeting to share my experience with Provenge. I arrived half an hour early and was able to listen in on the conversations. I am envious of all who are able to attend support group meetings. What a blessing it must be. I was only able to attend 20 minutes of the open discussion time but that's all it took to see the value of support group attendance. People who live in the city are lucky. Well, they are lucky except for the crowds, the traffic, the noise, and all the other stuff that comes with urban life.

  After the open discussion I shared my cancer story as well as my experience with Provenge. I ended by singing "I won't back down" by Tom Petty. I got home at close to 11:00 pm. Although I will not be making the 2 hour drive to attend another meeting, I would encourage every man with this disease to attend a support group if they can.

 
 

Things can always get worse

  Yesterday was a bad day. Not because of cancer but rather with life in general. It started out bad. It never got better.

  We have cats. Actually we have cats and dogs but at one time we had 8 cats and all but 3 were feral. Maybe we have "sucker written on our foreheads but we took in every stray we ran across for a while. As of yesterday morning we are down to 4.

   For the last month we have watched as one of the outdoor cats got thinner and thinner and began losing hair. We gave him worm medication and fed him tuna and salmon but he continued on a downward spiral. For the last week we put him in the bathroom at night with food, water, and a soft blanket and let him out in the morning. We will be needing a new bathroom door. Sunday evening I carried him into the bathroom, set him down, and provided him a bowl of albacore tuna. "The good stuff", not the nasty cheap stuff! When I opened the door yesterday morning it was clear that he had not moved all night. His food and water was untouched. He had to be put down.

   I was late for work yesterday because I had to bury the cat. His name was "Ozzy" He was a big, solid black, "Tom Kitty" and he was a good boy! 

   Yesterday I had band practice and because I was late for work and had to stay late to make up the hours I lost, I was in a hurry to get home. On the way out the door, a co-worker said "Have a good evening" I foolishly replied, " It can't get any worse" WRONG!! It can always get worse! 

  On the way home my old clunker work truck decided to over heat. I let it cool down and for the next 3 miles, I drove it up the hills and then shut off the engine to cool it as I coasted down the other side. I got home but for a while it was questionable if the truck would make it. 

  Practice went great. We played a lot of great music and had a good time doing it. After practice I headed home. The first thing I did was look at the mail for the day. I opened a letter from a company who is in charge of online fishing and hunting license sales in Washington. The letter stated that all of my personal information had been stolen. Yay!!

   After absorbing that blow, I took the camper off of the Dodge so I could drive it to work in the morning. 

  Finally it was bedtime. I showered then brushed and flossed my teeth. While flossing, I popped a crown. $&@?

Goodnight!!

  Every trial brings with it a gift if we can only distance ourselves from the situation far enough to see it. I did not see any of my gifts until this morning. I wasn't really looking for them. I'm still not but some have become self evident. Sure, my truck needs repair but at least it broke down on my way home and not on my way to work. My personal information was stolen but I have 2 years of free credit and identity theft monitoring. Everything is a matter of perspective.

   Cancer Sucks!! There is no other way to see it but even cancer brings gifts. They are not always self evident. Sometimes we must search for them. Sometimes we must step out of our situation to see the blessings. Is it the chicken or the egg? I had a thought but it died of loneliness. 

   Does cancer cause blessings or is it the blessing. Perspective!

  This morning I had a revelation of truth. It is one of recurrence. I am the happiest I have ever been. I am not proud of parts of my journey but in aggregate they brought me to this place. Embrace the suck! Todd

 

 

The caregiver

   Caregiver, Lord, I hate that word. I'm not alone. Statistically, 40% of cancer patients view the term in a negative way or object to it outright. To me, the term caregiver, invokes images of hospice and end-of-life care. Mandy does not fall within those parameters. In our relationship, I be like Rocky Balboa and cancer be Apollo Creed and he be kicking my ass.

 Mandy be like Mickey in my corner. Granted, she is a much better looking, kinder, and feminine version of Mickey, but you get the idea. She is the one pushing me to fight. She is the one who gets me outside and motivates me to live my life in spite of cancer. 

  The problem is not the word caregiver, the problem is my perception of the word. If we did not use the term caregiver then what word would we use. In reality there is really no other word that fits the person or persons in our lives that walk through this journey with us. Amanda is my wife but what about people who are not married. Loved one might work but some caregivers do not fit that catagory either. Another problem is that if we tried to change things up, nobody would know what we were talking about. I guess I will just have to learn to live with the word. I need an attitude adjustment. Oh, by the way, the Seahawks lost to the Rams today so my attitude is in need of much adjustment. Go Hawks!!!

Bad Logic

   I use to be immortal. Life insurance was for an older and much wiser genre. I got sick. Now it is too late. They don't sell life insurance to people who need it. I was kind of like this guy.

  Okay so I wasn't the brightest crayon in the box. Few faux-immortals are. It wasn't a problem prior to Diagnosis.

         I kind of felt like this guy.

So, I am going to die really young they said. How do I provide for my family? "Simple" said my financial guy. "Go heavily into debt on high dollar minimally depreciating items and take out life insurance on the loans." Wow... Great idea. I die, the loans are paid off and Mandy can sell the Items for profit.

   As mentioned above, I am not the brightest crayon in the box. Further more I am not the sharpest tool in the shed. I am a brick short of a load. My elevator doesn't reach the "Top floor", and if brains were gasoline, I couldn't power a sugar ants motorcycle around the inside of A cheerio! I neglected to factor in one possible scenario. What if I don't die?

   For the last ten+ years I have remained heavily in debt hoping to buck the system. Over the course of ten years, I have managed to piurchase and pay off quality firearms, expensive guitars, a very nice boat and several other toys and vehicles. While in doing so I have managed to fill our toy box, it is clear that 10 years later I would have served my family far better by putting that money into short term bonds and long term investments. I am not complaining. It has been a lot of fun. Mandy will benefit financially and we have all benefitted in the enjoyment of our lifestyle but hindsight is 20/20. 

   My plan would have worked quite well had I followed my original prognosis but I guess life really is a crap shoot. 

In summation: "It is time to go boat shopping!!"

   

   

Adjusting to a new chapter

   Writing has been slow as of late. Perhaps it is on a parallel course with life.

Last year it seemed as though we were running somewhere every evening after work. Our daughter kept us busy. It was her senior year in high school. It seemed as though we were attending a different function every other night just trying to keep up with her. The last few weeks of high school we had multiple activities almost daily. And then it ended!

   Life is still. Michaela began her first job and is starting college in a week. Many evenings it is just Mandy and I at home. It is a quiet time but it has its own special beauty. Michaela is transitioning into adulthood and adjustioning quite well to the new responsibilities. She opened her first checking account and religiously saves for the third of tuition we require her to pay herself. It is not that we cannot afford to pay all her tuition but rather we want her to have a vested interest in her future. We took her to our insurance agent and allowed her to choose her insurance options. I was pleased that after speaking to the agent, she chose wisely. I think we did a good job. We are pleased. As Mandy and I adjust to a semi-empty nest we struggle to fill the empty hours. Thank goodness the walking dead starts in 6 weeks!!!

   Summer is over. We washed the boat and cleaned up the interior and hung all the lifejackets and wetsuits up until next year. 

Last weekend I rolled the snowmobile trailer into the garage and started getting the sleds ready for winter. Hunting season starts in a few weeks. I'm looking forward to my 10 days in the wilderness chasing elk up and down the mountains of the Pacific Northwest. With all of our free time, we have been working on projects around the house that previously we never had time to complete. 

We have decided that we won't be taking any vacations for the next two years. Our home was built in 1979 and although it has had significant upgrades it is beginning to show its age. In the next two years we hope to paint, re-roof, install new carpet and flooring, and finish the landscaping. It will be a huge undertaking. In some ways I feel I don't exercise a lot of common sense. I've always been too stubborn to pay somebody to do something I know I can do myself. If the car breaks down I fix it. I do all of my own home repairs. The list is extensive. I am fairly competent at drywall, electrical, plumbing and general carpentry. Sometimes I wonder if I will ever reach the age where I decide to take the car to oil can Henry's for an oil change instead of getting down on a creeper and doing it myself.

   It is a quiet time. I think I'm going to like this new chapter.

   On the cancer front, nothing has changed. My last PSA came back as undetectable. Life is very good.

  We found the boat we hope to buy in the spring. It will be hard selling our current boat. We have had five years of wonderful memories of fun in the sun. The family however, is getting bigger. I have six granddaughters and another grandchild on the way. Michaela has been dating the same boy for a year and a half now. I think they are starting to get serious. Soon there will be more grandchildren to teach how to water ski. That's all I have for now I will be writing more soon.

   

Zytiga 3 years and counting.

  I have now been on Zytiga for

3 years. My most recent PSA came back at an undetectable level. It has been at that level for 30 months. It has been a good ride. I began writing this post over a month ago so currently I have been on Zytiga 38 months. I guess the reason it has taken me so long to finish this post is because my emotional state is a little mixed at the moment. Don't get me wrong, I am elated that I have had such an amazing response to my treatment. What concerns me however is the length of time I have been on treatment. Every day it seems there is some ambulance chasing law firm on the television filing a class action lawsuit against a pharmaceutical company because of side effects from long term drug use. 

   Long term Lupron use causes several nasty little side effects. I get to look forward to ostioperosis, increased risk of heart disease, and now it appears I have a 50% higher risk of developing dementia. I am sort of a glass half full kind of guy so on a positive note, I may live long enough to forget I am sick.

   Zytiga is an unknown. In the short term I have noticed very few side effects other than higher blood pressure due to the prednisone and a tendency to bruise easier. Not much is known yet about long term exposure to the drug. I, and a million or so other guys, are essentially Guinea pigs. It is necessary. It is the only way science can advance cancer treatments. If my prognosis was not terminal, it might be unsettling but the truth is, were it not for these new treatments, I would already be in the grave. I suppose that as long as I don't grow a third eye or something equally bizarre, I can handle any side effect that comes down the road. 

   It has been 124 months since my stage IV diagnosis. I feel good most of the time. I seem to need more sleep lately but I am getting older. I think part of that is normal. 

  When first diagnosed, I would ponder all of the things I would miss out on because of cancer. I felt ripped off that I would not celebrate my 50th birthday like all of my friends and family. In 6 weeks I will be 53! All of the things I thought cancer was going to steal away from me continue to happen. I am grateful. 

   

   

  

  

I still have cancer

   I have been on the drug Zytiga for 3 years now. At times I have felt like this disease might never come back. I have even toyed with the word "cured"! A pipe dream perhaps. Isn't that what all cancer patients want? To be cured! I do want to be cured. I want it with all my heart. I want to hold my wife in my arms and feel the rush of passion she so much deserves. I want to believe in a future that is without the asterisk of cancer. I know however that I have been living in denial. 

   Last Monday I went in to have blood drawn for monthly labs. I was not suppose to have a PSA test and they did not draw blood for one but my Doctor must have insisted on having one drawn because the next day I received an email stating that I had new test results. 

   For the last several months, my PSA has come back as less than 0.02. Prior to that it came back at less than 0.05 for almost 2 years. On this last PSA test it came back at less than 0.05. What does that mean? Absolutely nothing. My PSA still falls below the lowest parameter that can be detected by the test that was used. They simply used a different machine this time. I am still undetectable. Yay!!

   When I get these online test results, I have a difficult time reading them. The font is very small on my phone and my eyes are not as good as they once were. At first I did not see the "Less Than" symbol. All I saw was 0.05. For a moment my heart sank. All I could think was "well here we go again" That is when reality set in. I still have stage IV prostate cancer. At this time in history nothing can change that. 

   I am doing well. We are on vacation and I have water skied every day like I am still a punk kid. Life is a wonderful gift and I will do my best to choke the life out of every day. Maybe the cancer will stay in remission forever. Maybe I am not cured but I am the next best thing. My blessings are too many to count. Vacation is not over yet and we have had Todd and Amanda time 4 times this week. No blue pill or injection required. I will write soon. Todd

   

Oh What A Difference!

   I met my new doctor yesterday and I couldn't be happier. What a difference.

Here is how I will make a comparison. 

   Last Monday, July 18, I had an appointment with my Oncologist at Kaiser Permanente. It went something like this.

   Hello Mr. Seals, how are you today. Is your PSA ever going to go up? Your lungs sound good. See you in 2 months and I will sign the orders for your prescription. 

   The entire time with my doctor was 5 minutes. There was never any discussion of what is next or the future or anything. 

   On Monday, July 25, Mandy and I drove south to Providence Cancer Center in Portland Oregon, to meet my new Oncologist. 

               Dr. Brendan Curti.

   My new oncologist sees patients one day a week. The balance of the week is spent in the lab. Dr. Curti heads a research team at Providence Cancer Center in the field of immunology. His team developed OX-40, an immunotherapy headed for a Nation Wide Clinical Trial in the coming months.

   To be fair, I cannot complain about the quality of care I have received at Kaiser Permamente. I can however state that they have never once went over and above any normal standard of care and have put my family through hell by forcing me to fight to obtain medication while this disease was progressing.

   The moment Dr. Curti walked into the exam room, we knew we had found our new doctor. His demeanor was both professional and compassionate. We exchanged pleasantries and then discussed why I was there. To my surprize, he listened to me. I explained to him that I have a minimum 30 year plan and when I stated that failure was not an option he didn't smirk. I told him that my current physician never discusses current or future treatment plans. I mentioned that I am not the type to get caught watching the paint dry and that I need to be included in the process. He listened to it all. 

   After our chat he did a thorough exam and then it was his turn to speak. He told me that I must realize there is no need to do anything different at this point. After all, I am in a durable remission. He acknowledged the fact that one day the cancer will return. He told me that if my PSA reaches .5 he will give me a pet scan. He talked about using radiation to kill small cancer clusters. He talked about using chemo and Xtandi and other immunotherapy. He talked about things my former oncologist never brought up.  

   Having a medical team that has your best interests at heart is paramount. I have never had that luxury until now. Amanda and I no longer feel alone in this battle. We can look forward to the future with confidence. Today we feel thankful and grateful!

   

   

   

Survivors guilt

          REST IN PEACE JORDAN

   Sometimes I think survivors guilt is the wrong terminology. When a group of army buddies are caught in battle and only a couple survive, the guilt that those soldiers feel is real. They come home feeling like they should have died with their buddies on the battlefield. 
In my travels and especially due to the fact that I am a musician, I have been able to participate in many cancer benefits. The hardest ones are always the children. Seeing children dying of cancer when they haven't started living yet is hard. Seeing a young mother in her mid 30s with two small children and stage 4 breast cancer is hard. Telling her to stay positive sounds hollow as she endures treatment after failed treatment. She knows that her children will grow up and she won't be there to see it. Only the most jaded among us cannot be affected by her bravery! Watching our friends die because no treatment worked for them while we have reaped the benefits of multiple successful treatments is hard.
   Tony Crispino's motto is stay positive. Jordan's motto was live thrive survive and my motto " live it loud " are all really positive statements but the fact is that although we want to convey that message of hope and we pray the treatments are successful 50% will fall below the median life extension and 50% will exceed it. A small percentage will exceed it many times over. 
   I do not feel guilty for surviving. I feel righteous anger that others did not. I feel compassion fatigue each time a new guy comes aboard with late stage disease and a poor prognosis. I want to encourage and give hope. Sometimes the results are positive and sometimes not. The higher the Gleason score the harder it becomes to give encouragement. We make friends only to lose them. In the process, a hardening of our hearts occurs. It is a defense mechanism. It is natural. It is necessary.
   Yesterday, for me, was a very bad day. I lost a friend I had never met. I felt a kinship with Jordan. Our diagnosis was very similar. We shared the same positive outlook.  We exchanged a few emails. We talked a few times. I believed he would do well. He didn't and now he is gone. Why??? Why did he fulfill my original prognosis while I have exceeded all expectations? Not Guilt! Just heart wrenching sadness. He, I believe, is in a better place. My tears are for his family and for myself!

https://www.youtube.com/watch?v=c8AF6gx8CY0

  In society we must give everything a name. In the process we marginalize and cheapen what it really is. It is love and it goes beyond cancer and beyond the grave.

---

What is Provenge

  Six years ago, after two phase 3 clinical trials the F.D.A. approved Provenge therapy for the treatment of castration resistant, (cancer that no longer responds to hormone therapy) metastatic, ( cancer that has spread to the bones or other organs) prostate cancer, for patients who are Asymptomatic or mildly symptomatic. ( my take on that is they are in little or no pain and healthy enough to do the treatment.) To this day, only 8% of men who are eligible for Provenge therapy actual receive the treatment.

NCCN guidelines recommend Provenge for first line treatment after a patient has failed hormone therapy. (Cancer is spreading despite the use af Androgen Deprivation Therapy). Many within the medical community believe that subsequent treatments work better and for a greater length of time if patients receive Provenge first. If this is true, and I believe it is, then why is it that over 90% of patients who are eligible to receive the treatment do not get it?

   I believe the short answer is 2-fold. Money and education. Money is obvious. Provenge is expensive. I have only two comments regarding money. The first is this. My dad use to say " good ain't cheap and cheap ain't good." The second is a joke Willy Nelson told in the Dukes of Hazard movie. "Why are divorces so expensive? Because they are worth it." Provenge is Good and it's worth it. Medicare and private insurance usually cover the cost of Provenge and there is a patient assistance program through Dendreon that also helps to cover the cost of treatment.

   The second part of the answer involves education within the medical community and within the patient advocate community. 

   I received a call from a guy last week who's doctor told him that Provenge doesn't work. I couldn't believe it. My doctor refused to prescribe it to me 4 years ago for the very same reason. He told me it wouldn't work and it was a waste of resources. I would not take "No" for an answer and we fought it all the way to the State Insurance Commissioner where he ruled in our favor. It is needless to say but I no longer see that Doctor. He based his professional decision not to provide on an article written by a stock analyst. Personally I think she held stock in another company but that is purely speculation on my part. Physicians need to be educated on the benefits of Provenge. It amazes me that 6 years after FDA approval there is still so much controversy surrounding the treatment. In some ways I get it. Medical logic dictates that if PSA is rising then the cancer is growing. Likewise if PSA falls then the cancer is shrinking. Provenge is different. It does not usually exhibit a PSA response. Doctors have no standard way of gauging it's effectiveness. This puts Physicians in the precarious position of not knowing and I believe in general, that it is not comfortable place for them to be in. It is difficult to have faith in a treatment when one cannot see the results. Provenge does work however and there are mechanisms that show it working. In the week and a half between the first infusion of Provenge a patient receives and the second Lukapherisis, labs can already detect an immune response.

   We in the advocacy community, need to do a better job of educating patients as well. Men tend to be a silent crowd for the most part. Real men do not cry, complain, or talk about personal health issues. This must change. We must inform those who are forced to follow us on this journey of every treatment option available to them. It may very well save their lives.

    No real man cries

What is Provenge

   Provenge/Sipeulcel-T, is the first ever ( more will follow )cancer vaccine for prostate cancer. It is an immunotherapy that fights Prostate cancer wherever it is in the body. It is a treatment administered usually ( it can take longer ) over a period of 5 weeks in three seperate Lukapherisis appointments( the patients blood is circulated through a centrifuge spinning off the white blood cells and plasma. This process takes 3-4 hours and other than a needle stick is painless)and Infusions ( the patients own activated white cells are re-infused) four days later. On a normal schedule this process occures every other week. 

How it is made./How does it work!

  I am not a molecular biologist nor do I pretend to have an understanding of how T-cells, antigens, or other enzymes work and interact with each other. All of that being said, I will attempt to explain the process in blue collar terminology. I use to wonder why cancer cells are not stopped by our immune system. The answer is that the cancer cells are too similar to normal cells. Granted, they are mutated angry cells hell bent on killing us but the immune system cannot distinguish between them. Enter Dendreon. At the Dendreon labs, white cells are seperated to eliminate cells that are not useful to the process. Out of the 60 billion cells collected, aproximately 75% do not make the grade and are disposed of. The remaining cells are then introduced to an antigen. This is where it gets fuzzy to me and I may not be completely accurate in my explanation but I will be pretty close. I believe that the antigen is similar to an antigen produced by Prostate Cancer. The antigen causes the Dendreonic Cells ( those cells that make the grade ) to proliferate. (Reproduce) and are then incubated outside the body for a couple days. The reason the cells are incubated outside of the body is so the immune system will not attack the antigens that activate the cells. Once the cells have been activated and incubated, they are re-infused into the patient where they interact with normal white cells and attack the cancer at the source. Simply put, the Dendreonic cells grow up eating cancer and develope an appetite for it. After infusion they are hungry and lead the entire immune system to a prostate cancer buffet. There is an interesting video on the Provenge website that explained the process in greater detail. Simply go to Provenge.com and have a look around. While there, you might go to patient stories and check out my video. I am a Provenge patient and a 10 year survivor of stage IV prostate cancer.

Side Effects

  The label says there are side effects. Some men do experience them. Most side effects are mild flu-like symptoms that last a day or two. I for one experienced no side effects whatsoever. It was the easiest treatment I have ever received.

A cure.

  As of Thursday July, 14, 2016 there is no cure for advanced prostate cancer. I believe a cure will happen in my lifetime.  (thanks to Provenge I believe I will live to see it)

I believe that immunology holds the key that will one day unlock the door to a cure. I believe that biotech companies like Dendreon and others will soon crack the code that cures this disease once and for all. Provenge is not a cure. Provenge is a tool that helps your immune system to identify and destroy cancer cells. Provenge is you. It is your cells empowered to beat up cancer and take its lunch money. To me, nothing could be more natural. My doctors believe that Provenge is why I am doing so well in my battle against the beast. 

  If you have advanced prostate cancer that no longer responds to hormone therapy, talk to your doctor about Provenge. If he won't prescribe it then find a doctor who will. Don't take "No" for an answer. In this day and age, we must be our own advocate. We must insist on what is best for us and not allow others to decide for us. Insist on tomorrow. Insist on Provenge. YOLO ......Todd

  

   

   

   

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

   

#healthevoices16

  I returned from #healthevoices16 Sunday evening April 17th happy to be home but already missing new friends. Janssen once again paid travel and accommodation expenses for myself and about a hundred other online health advocates attending. #amazing

   I arrived in The Windy City a little after noon on Friday April 15th. I was one of the first attendees to reach the Reneisance Hotel at 1 W. Wacker Dr. The hotel was really beautiful and as I entered the lobby I had to stop and take it all in. Walking though the door I was certain I was experiencing how Dorothy must have felt after landing in Oz. City folk might be used to expansive artistically decorated spaces but to a hick from the sticks it was mesmerizing. It took several minutes to find the front desk and a few more to get checked in. As I closed the door to my room behind me, a wave of relief washed through me. I was alone. To be honest, cities freak me out a little. In the country I am at peace. In the city there is no peace to be found.

   After a quick shower and shave I headed out to explore a block or two of the city. I have never been in close proximity to such tall buildings.

No political affiliation or endorsement. Just a really tall building.

   The hotel sits across from

Trump tower along the Chicago River. I didn't stray too far but got to look around a little bit. One thing I love ( actually the only thing ) about the city is the musicians playing outdoors at any given time of day. On this particular day a blues band was Jammin' along the waterfront across from the tower.

   The conference began at 5 p.m. with a meet and greet social hour. There were familiar faces but I couldn't put names to more than a few. Once again I was the only person representing prostate cancer. I felt a little out of place during much of this as I watched different groups of advocates interact with each other. I am quite certain that they know as little about PCa as I know about HIV, HepC or Crohn's disease, nevertheless I tried to interact and learn what I could about the other advocacies. 

  It is inspiring to be in the presence of so many advocates who work tirerlessly helping other patients navigate the torrent waters of the healthcare system. Advocacy can be a thankless job. It is largely shunned by the medical community even though advocates are experts in their prospective conditions. Occasionally bloggers will get a check from web sponsors who place ads on the blogs. In my case knowing that I have helped just one person is payment enough. I hope to inspire by example. Cancer sucks. There are no better words to say it. It is life changing and often life ending. It can destroy quality and quantity of life if we give it power to do so. Even while in solid remission it lurks in the mind whispering defeat and stealing our joy. For me it has always been the mind game that torments my soul. 

  I met a young woman battling breast cancer. Her courage inspires. I met people battling HIV trying to dispel the stigma surrounding the disease. I met young people battling Ruematoid arthritis who refuse to let the debilitating effects slow them down. These men and women who are plagued by a multitude of conditions still reach out daily to help others. My little blog pales in comparison and I am driven to follow their noble example. Please share my blog. Please follow it. Please help me to reach men who suffer from this miserable disease. Kindest regards to all who read, Todd