Wednesday, July 27, 2016

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!
   
   


   

Tuesday, July 19, 2016

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!

  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.


Wednesday, July 13, 2016

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
  


   



   
   

Saturday, June 25, 2016

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.
   
   







Monday, June 6, 2016

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

   

Friday, May 27, 2016

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






Thursday, May 26, 2016

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.