Tuesday, August 1, 2017

The wheels turn slow

   Two weeks ago I saw my Oncologist. At the appointment we discussed genetic testing and a referral was made to the Genetisist at Providence Cancer Center. I am still waiting to be contacted. Sometimes "the waiting is the hardest part" You gotta love Tom Petty! He is the coolest man in Rock and Roll.
   You may ask why Genetic testing? What does it matter? 
  Genetic testing is the future of cancer care. Testing the DNA of tumor cells can determine which therapies are likely to work for a given patient and will ultimately lead to targeted therapies tailored to the individual mechanism of cellular proliferation of cancer cells.
   The idea of being genetically tested came from a visit with Dr. Vogelzang late last year. During the visit he stated that I should be tested for the BRCA mutation. He is of the opinion that the aggressive nature of the cancer and the widespread lymph metastasis could stem from being BRCA positive.
   The idea of genetic testing has really taken off in recent years. The Genome project in breast cancer has yielded many advances in how breast cancer is treated. There is currently a Genome project underway for prostate cancer. I can only speculate that the same thing is happening throughout the broader cancer spectrum. 
  
As research continues to advance, I look forward to the day when patients will no longer be forced to endure side effects of treatments that will not work. Standard diagnosis will include gene mapping as well as imaging. Each patient will receive a detailed treatment plan tailored to the specific genetic make up of the cancer. Spock said it best.... "Facinating" 
   Once I see the geneticist, I will post more information. Right now I have nothing but speculation to share. 
    Thank You for reading
              Todd

P.S. For more information regarding the prostate cancer research (Genome) project, here is their Facebook page



Thursday, July 27, 2017

Thank all of you


Getting older

   My doctor said I had a year to live. That was 11+ years ago. What do you do when you hear those words? You start thinking about all the things you won't get to see or do and in my case you spend your retirement savings. 
Doh!!! 


   I have been throwing money at retirement trying to get caught up. It isn't easy but it is a necessity. It appears I am going to live long enough to retire. I have also lived long enough to experience some of the challenges of aging. Getting old sucks but it does beat the alternative. 
   Tuesday last I developed a rash on my left shoulder blade. I knew what it was immediately. For the two days prior I had chills and mild flu-like symptoms. I have Shingles. ( darn those chicken pox ) On the Monday before, during a routine cleaning, I found out that I am losing gum thickness. I also need a couple of dental implants.
   Every time the weather changes, a few days prior, my left big toe aches to high hell due to arthritis in the joint. I use to think old codgers who claimed stuff like that were senile! I understand now why so many people move to Arizona when they retire! My hearing is not what it use to be (too much rock n roll ), I don't pick up a book (or even a package of taco seasoning for that matter ) without first donning my reading glasses, and when I walk into a room, half the time I cannot remember why. Maybe those old codgers are senile!
   There were many many things I thought about when I was diagnosed. It saddened me that I would never get to celebrate a 50th birthday. December 2, I will be 54. I had just started an apprenticeship a few months before my diagnosis. I was sad that I would not become a journeyman. I have been a journeyman pipefitter for 7-1/2 years and actually completed another apprenticeship in lubrication. I thought about all the places I would never get to see or do. Over the last decade, we have seen and done many of them. 
   I never considered what aging was going to be like. Quite frankly, I didn't think it would happen! Although I am not at an age that most would consider old, I am in no way a spring chicken anymore. I guess I am more of a mid-late summer chicken. Now that maturity (physical that is ) is beginning to set in I believe I will have more things happening to my body to laugh about! 

   


The point of all this is that nobody knows the date and time or the when and where of our demise. Common wisdom says I should have been ashes long ago but here I am. Even if you have been diagnosed with a terminal illness it doesn't mean that the doctors are correct. Human wisdom can be wrong. Live for today, plan for the tomorrow, and above all, take care of your body. It is the only one you have.


Wednesday, July 19, 2017

Month 135

Good morning,
   I know, I haven't written much lately. Quite frankly there's just not a lot to write about. It used to be I would see my oncologist once a month. Seemed I was always having blood work drawn and test results to post. Lately that has not been the case. I last saw my oncologist in January. Until yesterday I had not had a PSA test drawn since that time.
    So far, it has been a pretty incredible summer. We have put almost 40 hours on the new boat. Considering that we are only midway through summer, that is a pretty significant amount of time. Last week we were on vacation. We loaded the camper onto the truck, hooked up the boat, and chased the sun to Prineville reservoir in Central Oregon. Once again, it was just Mandy and I as our daughter is now a full-time student at college and a part-time employee at the local burger joint. 
    We reserved our campsite nine months ago to get the very best campsite available. It was worth it. This was the view from the door of our camper!
 
This photo was taken the first morning of our vacation. We awoke to 75° temperatures at eight in the morning and a lake as smooth as a sheet of glass. It was perfect!
   We spent our days on the water, our evenings gazing at stars, and our nights holding each other close. Thank God for air conditioning. At times it was hard to keep my upcoming Oncology appointment off my mind. I was a little stressed out.
 
 


 
   We got home Saturday last and my anxiety continued to build around my upcoming appointment on Monday the 17th. I was really nervous regarding what changes had taken place. Had my PSA risen? Was the cancer growing? Would I require a change in treatment? So many questions.
    On Monday as the Nurse inserted the I.V.  line into my arm, I was filled with a sense of peace. I knew that no matter what the results were, it would be okay
Yesterday I received my test results. Here is a screen shot of the results of my PSA

 
. As it turns out I had no reason to be worried. After 135 months since my stage IV Prostate cancer Diagnosis, that include 10 years on lupron, 3 years on Casodex, 6 months on D.E.S., Provenge Therapy, and 4 years and counting on Zytiga, my P.S.A. is still holding steady at less than 0.01. Needless to say I am very happy. 
   Many thanks to God, Janssen, Dendreon, Kaiser Permanente,  my many friends and followers, and Providence Cancer Center. 

Wednesday, June 28, 2017

My take on Healthcare

   I am a product of the 60's. The year I was born (1963) was considered the last for the baby boomer generation.It is also considered the first for Genx. I was a teen during the 70's and came of age during the Reagan Era. I remember the labor disputes of the 70's as my dad, ( A Card Carrying Union Welder) went on strike in 1976 and again in 1978. '78 was rough. The strike lasted 6 months. The local went back to work after 6 months for basically the same offer they refused and walked out on. I remember when Reagan fired the air traffic controllers. In my mind, that day ended the power of unions to bargain a contract from a position of strength. Unions have been in decline ever since. Benefits my father and grandfather fought for are all but gone. When I was a kid, it would cost my parents $5 for us kids to see a doctor. We had $1500 a year in dental care. Flash forward 40 years and we have $2000.
   Growing up I was taught to fear the communists. The Russians, North Koreans, and Red Chinese among others were evil empires hell bent on world domination.   I assumed, wrongfully, that socialism and communism were the same thing. As it turns out, Greed and world domination are not a product of any particular political system. 
   I work at the same mill my dad worked at albeit with a different name. I started in '99. Ironically that is the year my dad retired. The year I hired on the company paid 100% of our health insurance premiums. That is no longer the case. Over the course of the last 18 years, we have paid more and more with each labor contract negotiated while our benifits have slowly eroded. Like all others, Obama-care took its toll on our health insurance. When Barack said if you like your insurance you can keep it he lied. Faced with penalties for Cadillac health insurance (penalties that never manifest) my employer stripped us of our HMO co-pay ($25 Dr. visits, $20.00 prescriptions, $5 injections, and free cancer medication) and replaced it with a high deductible 20/80 plan. No offense Mr. President but you missed the mark. My new health insurance doesn't SUCK but it is not what I had.

   We have adjusted. The one constant in life is "things change"! There are a ton of good things in Obama-care that I love. Obviously, the pre-existing condition clause is a favorite and having our daughter on our health plan until she is 26 is awesome. I love that preventative care is free. There are a few other things we like but most of it does not affect us. 
For at least a decade prior to the ACA being signed into law, I witnessed rising medical costs, rising insurance premiums, and an ever shrinking middle class wage. I use to get really angry when I went to the emergency room with my identification and insurance card and the room was filled with people who had no health insurance and in many instances had no intention of paying the bill. A close friend of my wife had 3 children. One of those children was a very bright wonderful little boy who happened to have special needs. My wife's friend was single and worked part time. She received food stamps, had to pay only $100 dollars a month rent. She received subsidized transportation in the form of a car, as well as subsidized utilities and cell phone. Meanwhile, my wife and I both were forced to work full time in order to make ends meet. Somehow it does not seem fair but it is the way it has always been.
   This week, the Senate is voting on various ways to repeal Obamacare (ACA) What a load of crap. They say that the ACA is failing and is basically a train wreck. It is a lie. Remember, these are the same people who call Social Security and Medicare, as entitlement programs. This confuses me! (Insert sarcasm) 
Do they not realize that for the last 40 years I have had 7-1/2% of my paycheck deducted for social security tax! 

Everything that every politician says is bullshit. Dem-Hypocrats want to give everything to the poor for free and the Repukes want to give everything away to corporations. Either way, the people who work for a living lose. We end up paying for everything. The American dream is no longer for hard working Americans who work hard, it for those who are better at taking than everyone else. Just my opinion.
   
   
   
    

Monday, June 26, 2017

Snake oil and the traveling medicine show

     
   Did you ever see the episode of Little House on the Prairie where the snake oil salesman came to town pedaling a tonic the cures everything? That used to be one of my favorite episodes. I couldn't believe people could be misled so easily!
   Cancer is a serious disease and it matters not which form rears its ugly head. Medical science is making huge advances in the treatment of cancer. I also believe that there are supplements out there that effectively aid in the fight against cancer. Still, it amazes me, that the traveling medicine show is still alive and well today. I read a book one time about A woman who had supposedly cured all types of cancer. She cited case studies of a number of patients she had claimed to have cured. The irony is that none of the patients that had been cured were ever diagnosed with cancer by an actual medical doctor. She diagnosed the disease and cured it. There were a couple of cases where the patient had actually been diagnosed cancer by a medical doctor prior to seeking out this woman and her alternative medicine but they left the study. I wonder why? Another book I once read claimed that eating 3 almonds a day could prevent cancer and often cure it. I would laugh but it's not funny. People believe this crap and die because of it. Another alternative theory claims that a vegan diet and coffee enemas will cure cancer. It seems people will believe anything!
    Little House on the Prairie was depicted in the mid-1800s and yet here we are today almost 200 years later and people are still playing the same old con game. Recently my blog has been inundated with so called testimonies of people who have sought out alternative medicine and have been miraculously cured of cancer, Hepititis C, HIV, and other serious health issues. I love it when people leave comments but these people (robots) are really starting to piss me off. This blog was created to share my story and provide hope to those who find it. It is not for con artists to prey on people who are at a vulnerable point in their life It does no good to ask them to leave. They don't care about people. They care only about profit.
    For those of you who find this blog please note that comments from others citing miracle cures are not endorsed by me.

Saturday, June 24, 2017

Sick in the pit

   My last PSA was midway through January. The last time I saw my doctor was mid-March.
I feel good I think.
  Yesterday I bought two tickets to the Matchbox 20, Counting Crows, concert. The concert is on July 19th. I just realized that is two days after my Oncology appointment and I have had a sick feeling in my stomach ever since. Why? I don't know. Maybe because it will be 6 months since my blood work has been done. Maybe because it has never been so long between PSA tests. Maybe because I am approaching 4 years on Zytiga. I am worried. I use to wish I could go longer without PSA tests. What I realize now however is that each good test result fed my confidence that the next blood test would also be good. It was also easier to rationalize that evennof it did go, there was no way it could go up very much.
     I have waited over 12 years to see matchbox 20. They are one of my favorite bands. Rob Thomas is a terrific writer. I guess you can say it a bucket list item. When the band broke up I thought it would never happen.
 

   The longest anyone has been on Zytiga is 8 years. There are a bunch of guys who have been on it for 6 years. My understanding is that the average time on the drug is 1 year.  A good friend of mine was on it for 44 months and recently went to Xtandi. It has not been a smooth transition!  Will we be celebrating at the concert or wondering about the future? It all depends on my labs.
   I still feel really good but unfortunately, that doesn't mean much. These disease exhibits very few symptoms until it is widespread. 
I have been tired. I usually wake up before the alarm. Lately I wake up to the alarm and often hit snooze. Amanda is doing the same though and I am certain she does not have prostate cancer. I am 53. I work hard and on top of that we are painting the house, prepping for new carpet, and trying to get our winter firewood supply cut and put away.
   Lately my teeth have been failing. Mostly it is from crowns failing that I have had for many years but there are 2 in particular that have very little original tooth left and may need to be extracted and implants installed in their stead. I have been on Zometa for 4 years. Implants will have to wait a minimum of 3 more months. Today as I sit in this chair awaiting the dentist I am on the verge of tears. Quite frankly, this sucks!
   My tooth can't be saved. I need two implants and a 3 tooth bridge. Does anybody have 5K I can have. 

Sunday, June 11, 2017

My wedding anniversary

This weekend Mandy and I celebrated 10 years as husband and wife. For those of you who have followed my journey this will be a recap but for you newbies, Amanda married me a year after my diagnosi. On our wedding day, I promised her 30 years.
   So, it has been 10 years. Hard to believe sometimes and yet it has flown by.
   Ten years ago I was blessed to marry my best friend. At the time, I was putting my life back together and living in my brothers trailer. The only thing I had to my name back then was a couple guitars, a wrecked truck and a job. My doctors told us I might not have a future but it didn't matter to us. Actually, it did matter but we both knew that no matter how much time was left, we wanted to spend it together.
 
Ten years has come and gone. They have been 10 wonderful amazing years. There have been challenges and days when the future was scary. There have been obstacles to overcome. They made us strong and shaped us into the person we have become. The Bible says "For this reason a man shall leave his parents and be joined to his wife and the Two shall become one flesh. I always thought that the
Verse was purely physical and talking about sex. I am only now after ten years beginning to realize the simple truth behind what the book was saying. I cannot imagine life without
Mandy. I no longer know where she stops and I begin. We are quite literally one person.
   To date, I have kept one third of my promise. 20 years to go. Not long. The last 10 years have flown by. The life we have today bears no resemblance to the life of the past. We live in a modest but beautiful home in a quiet neighborhood in the country. We have literally everything we have ever wanted and we have been blessed to travel to beautiful tropical places. Our life together is filled with friends family and fun balanced by hard work. Our children are grown. We will soon be Empry nesters.
   Friday the 9th was our anniversary. We celebrated by going to the open air market in Olympia, riding bicycles on a 15 mile rail trail, and having dinner at falls terrace restaurant at the foot of the shuttered Olympia brewery. Yesterday we drove south to the Willamette Estate Vinyard for lunch and on our way home stopped at a new Casino where we gambled, dined, had a drink, dances, and came home with a few dollars more than we had when we left. Life is good.
Live it loud!!

Friday, June 9, 2017

My you.tube channel

I have taken to video to show another side of who I am. This link has me singing a song! (Not very well)
Advanced Prostate cancer takes its toll on intimacy.The song I am singing is about the death of intimacy. Mandy and I only had 6 months before my diagnosis. They were amazingmonths! It has been hard but we will not allow this disease to steal our love. 

Tuesday, June 6, 2017

Another Anniversary

   Today is the 11 year anniversary of my stage IV diagnosis. 11 years!!! 
  I am not sure how this post became public. It wasn't finished yet. 
   It is at times, hard to believe, 11 years has past. Today I am reflecting on those early days so many years ago. Those were the hard times.   Those were the days when the gravity of my condition came crashing down around me..
 
The problem is that it feels  like a distant dream. It doesn't seem real anymore. I am connected to those days only because I know that some day this Cancer could come back.
I have nothing to write about and I am good with that. Nothing to write about means cancer is not the focal point of our lives. Nothing to write about is a good thing. 
   I have adjusted to the new normal. I am happy. We live our life as though cancer was never a part of it. We plan for the future. We celebrate today. We look forward to retirement. We both know someday it can come back. Ignorance is bliss I guess. 
   One day I will have something to write about. I do not look forward to that day. I hope and pray that it never happens. Maybe I am the patient who received the right treatments at the right time. Maybe the cancer that wanted to kill me is dead. There is faith and there is doubt. It becomes mental masturbation. There are so many what if's.
I still lose friends. Children lose fathers. Wives lose husbands. Men die. I thrive. 

Two weeks ago I waterskied behind the new boat. I crashed and cracked a rib. I am in a lot of pain but it will heal and the pain will cease. For my friends the pain doesn't end. I carry them in my heart. They are never far from my thoughts and prayers. 
  I am selfish. I never want this remission to end. 

Thursday, May 18, 2017

Day 4000

Saturday, May 20, 2017. 8:48 A.M. Today is day one of a long awaited 10 day vacation. It is also day 4000 since my stage IV prostate cancer diagnosis.
   This post wasn't supposed to be published until Saturday. Somehow I must've hit the wrong button. That's OK I'm going to continue to add to it as time allows.
   Yesterday I had a conversation with the plant manager. He had noticed the bruises all over my shoulders and upper back and wondered what had happened to me. 
  Saturday last, I installed a new trailer hitch assembly on my truck. It amounted to four hours on hard concrete underneath my truck. Sunday I was sore. Monday I was really sore and stiff as well. While toweling off after my shower Monday evening I caught a glimpse of my back in the mirror. My entire back and shoulders were covered with golf ball size bruises.

Wednesday, May 10, 2017

Just an update!

Good morning everyone,
   I know, it has been a while. The truth is I just haven't had anything pertinent to write about. I can fill a date with words but what good does that really do. If it's not going to help somebody, if it's not cancer related, and if it doesn't give hope to others then writing become self serving.
   Sometimes  it is OK for something to be self-serving. I first began this blog as therapy. Sometimes it is still therapy and sometimes it's just a huge pain in the ass. I love to write. I love giving myself away to others. It puts me in a very vulnerable position to just throw it all out there though. It's worth it. If I can help to inspire hope in just one other person it's definitely worth it.
   So I was thinking recently, Living in a small town, there is not much diversity. There is not a lot of color nor is there a great deal of diversity regarding sexual preference. I don't think I know a single transgender person and in all honesty I only know a couple of gay people. H.I.V. Freaked me out in the 80's back then there wasn't a whole lot that was known about the disease. There was however, enough known about it for ignorant people to make demeaning jokes about human beings that were different than they were and who were facing a terrible disease and horrible death. I myself was guilty of those jokes. 
 
   Two weeks ago I attended #HealthEvoices17
in the Windy City. Janssen paid for my travel expenses so I could attend. It was my third time attending the conference. I am so glad I was able to attend. What is Healthevoices? 
Healthevoices is a conferences for on-line patient health advocates. Each year, Janssen, together with Tonic, WEGO, and Healthline, invite a hundred or so online health advocates to attend for a weekend of sharing and learning from each other. This year there were representatives from Facebook and YouTube as well as many other great presenters and panelists. It is an amazing weekend.
   In past years I have been the only person representing prostate cancer. This year was no different. There was suppose to be another prostate cancer advocate but his PSA was spiking and he could not make the trip.What was different this year was my interaction with others. This year I really got to know some people and step out of my comfort zone. I must admit, I miss them.
   You may be asking. How does the first part of this blog relate to the last couple of paragraphs? 
   The advocates attending Healthevoices represent a wide range of chronic diseases and conditions. One of the larger advocacy groups in attendance was the H.I.V. group. Also represented was rheumatoid arthritis, psoriasis, I.B.D., Crohns, Breast Cancer, mental illness, and many others.
   One of the break out sessions dealt with combatting stigma. As I listened to the panelist discuss what they had gone through I realize that I had been one of those people holding onto predjudice because of stigma. 
   I have faced my own battles with stigma but they are nothing compared to what others have  gone through. Throughout history there has always been stigma surrounding disease. The stigma surrounding leprosy for instance was so severe that people created a place for the lepers to live away from the general population. It saddens me and frustrates me that in an era of information overload there is still so much misinformation out there regarding chronic disease. 
   Perhaps one day society will overcome Stigma. Perhaps one day we will no longer fear that which we do not understand or feel threatened by people who are different than they are. I know that I came away from the conference a changed person. I wish everybody could experience that. 
   Throughout history there has always been stigma and prejudice. It isn't right but it is a fact of life. My mom used to tell me that I should never judge anyone until I've walked a mile in their shoes. Unfortunately I was a slow learner and had to find out what the karma surrounding prejudice is all about. Often times I found myself walking in the shoes of people I had judged or ridiculed. As it turns out I didn't handle their situation nearly as well as they did. It is my honest wish that no one ever have to experience what it's like to deal with a chronic disease. I know that's not realistic either. Wouldn't it be nice however if  human being struggling with chronic disease could do so without stigma and prejudice. #educate #healthevoices17 #love
   

Friday, May 5, 2017

Cure

http://www.afr.com/lifestyle/health/mens-health/provocative-study-raises-possibility-of-a-cure-for-advanced-prostate-cancer-20170424-gvr2ti


 
I had an idea this headline was coming after my meeting with a prominent prostate cancer oncologist in Las Vegas last year. During the course of that meeting the doctor said he felt I was a good candidate for an aggressive form of treatment that very well could eradicate prostate cancer in my body. At the time of diagnosis the word "cure" was not part of my vocabulary. It was a fantasy! It ranked right up there with Santa Claus the Easter bunny and an honest lawyer. Yet, here I am 11 years later and the urology community is throwing around that very word. Amazing! 
   The idea of being cured sounds almost too good to be true. Certainly, it is something I have hoped for since my journey began. I do however wonder about the cost. What price will I have to pay for the possibility of being cured?   
     To answer that question one must understand what the treatment entails. It is my understanding that in order to cure a man with advanced prostate cancer the first step is removal of the prostate and surrounding lymph nodes. This is done by radical prostatectomy. This will not be in most cases, your nice tidy nerve sparing surgery. In cases of advanced disease, they will take everything. After prostate removal patients will undergo A shotgun of therapy to attack and kill satellite metastases. These treatments include androgen deprivation, chemotherapy, radium, and a second line therapy such as Zytiga or Xtandi. After undergoing therapy, the patient will then be takien off all treatment and will be monitored to see what happens. 
   I spoke to my urologist regarding the idea of curative therapy just a few short months ago. I may as well have been talking to the soup Nazi. "No Cure For You "
   The question I find myself asking is this. Do I even want curative therapy?
   The first paragraph of my blog introduction pretty much says it all. Life is really about the quality, not the quantity. I have touched on this subject in previous blog posts. I find myself in somewhat the same situation as the newly diagnosed men who are traditional candidates for curative therapy.
 
   There has been much todo regarding overtreatment the last few years. It has been discussed whether or not men should even be screened for prostate cancer. I get it. Some guy comes in off the street with a G-6 or organ confined G-7, hears the word cancer and loses his mind. The next thing you know he has his prostate ripped out and is facing a myriad of side effect from his surgery. The first thing the poor guy has to deal with is incontinence. Some guys require a year before they can stop wearing absorbent pads. The next thing they have to deal with is erectile disfunction. Penile rehab consists of using a pump and Cialis or Viagra as well as a retaining ring. Sometimes men require self injections to function. Many times, nothing works regarding incontinence or E.D.  and men must resort to having a penile implant to attain a semblance of normal sex life and an Artificial Urethra Spincter to stop werting themselves. Even for men who overcome all of these issues, they are surprised to find that their penis is an inch and a half shorter. I am amazed at what the surgeon never tells you.
   So to the matter of curative therapy in my case........PASS.
   I have a semblance of intimacy in my marriage, I do not pee myself, and if I lost an inch and a half I would have an "inny not an outty"
   My life is pretty good. As they say in the shop, "If it ain't broke, don't fix it"

Todd
   

Friday, April 7, 2017

$&@# Cancer

    Yesterday I lost another friend. 
Sometimes it is hard to feel joy. It's not easy to
preach hope and stay positive when your friends die. In the 3 years I have been writing, We have lost no less than 25 warriors. I have actually heard people say I am lucky I Got the "Good Cancer" I wonder what Jim would think about that?
   It is still raining! The wind is howling and the power is out. Winter is not ready to release her grip. Somehow it makes it harder to feel joy. "Kimo" says "No Rain, No rainbows" I wonder if Kimo realizes that the sun is also required. 
   
   

Monday, March 13, 2017

Day 3931

  There is nothing significant about this day. I simply could not think of a better title. Not much has happened in the last six or seven weeks. Most importantly however, I finally gave up tobacco. I quit chewing on February 1  of this year. Some might question why I did not give it up long ago. You would think that it would be a no-brainer. I mean really, isn't it bad enough having one cancer? Why would anyone who has cancer risk getting another cancer due to tobacco use? 
   The answer to the questions above is surprisingly simple. Quitting tobacco is hard!!
I beat drug addiction. I quit using meth cold turkey almost 13 years ago. Nicotine addiction is way harder than that. 
   Even though I should have done this year's ago, I am still really proud of myself. It wasn't easy. There were about three weeks, that nobody wanted to be around me. To put it short and sweet, I have been an asshole!
   I am mostly over it now. My short temper and constant agitation have been replaced by sarcasm. Simply put, I am almost normal again. 
    Today is oncology day. I saw the nurse (my oncologist is in research), my labs have been drawn, and I am now awaiting Lupron and Zometa. I am ready to be home and I am famished but I will have to wait. My blood work will not be back for 40 minutes and then it will be half an hour for the infusion and then an hour and a half to get home.
   I am still in a learning curve regarding my new healthcare system. I have a lot to learn to insure the appointments go smoothly. 
  I don't have much else to write about. The weather sucks. Our boat is still 2 weeks away and the weather really sucks. My left butt cheek hurts and I really want to go home. Looks like it won't be long, here comes my IV bag. 
   

Saturday, March 4, 2017

Looking ahead

   I have been on the oral chemotherapy Zytiga for the past 42 months. I am currently undetectable in regards to scans and PSA.
I have been doing so well for so long that contemplating what comes next seems someone moot.  I guess however I have always believed that if Zytiga ever failed I would simply move on to Xtandi.
   A couple nights ago, I shared a phone conversation with a friend of mine who lives in Pennsylvania. He was on Zytiga for 44 months.
   Typical ADT stops the production of testosterone by the testicles. Prostate cancer, starved of its favorite food, begins to die. Often , typical ADT, can keep cancer at bay for months and years. Eventually however, the cancer adapts in a way that allows it to survive and thrive on the residual testosterone produced by the adrenal gland. Enter Zytiga
   Zytiga shuts down the production of testosterone by the adrenal gland. Actually it shuts down the adrenal gland all together which is why Prednisone must be taken with Zytiga. 
   6 months ago, my friend in Pennsylvania, was seeing a rising PSA despite being on Zytiga. Last month, his doctor felt it was time to change his course of treatment. The transition was far from smooth. He has been on Zytiga for so long that after going off of the drug, his adrenal gland appears to be shut down permanently. I don't know what percentage of men this happens to. The drug is too new to have a lot of documented history. I have to say though, I am just a tad concerned about my future. I have now been on Zytiga for 42 months. Is my adrenal gland dead as well?
   I realize that the results of one patient do not  amount to a hill of beans. It does however cause one to ask many questions.
  Should a man go on Zytiga and stay on it or should it be given intermittently. Will Zytiga be found to completely shut down the adrenal gland permanently with long term use. If so, might surgical removal be a possibility. I am not a doctor. I am not a scientist. No degrees in molecular biology. Hell, I am not even that smart. I just ask lots of stupid questions. There is "1" thing I do know for sure. We are the first generation of men to use these new weapons against cancer. We are pioneers. Long term side effects will be made manifest in our lifetime. I guess there are 2 things I know for sure. Whether these new drugs give us super powers or cause is to grow a third eye, we are in a much better place with em than without em!!! Yolo, Todd..."life is good, live it loud"

Thursday, March 2, 2017

Month 129

   Another month has come and gone. The Ides of March are upon us. Where does the time go? The weather still sucks. It is the whole" In like a lion, out like a lamb" thing I guess. 
In southwestern Washington, it is cold, wet, raining, and grey. "Wanna get away?" Damn straight we do. This year however, the wallet is just a little too thin. I need a speaking engagement in Florida or Hawaii. No speakers fee required!!! Simply fly us out to a tropical location and put us up in a nice hotel for a few nights, feed us, and maybe rent us a car. In the world of public speaking, that is what is known as a bargain.
   Friday last, we sold Yellow Boat 
She was a good boat. We took this picture a few minutes after the new owner took her for a test drive. After posing for pictures, we took her for one last cruise around Silver Lake. 
Mandy and I delivered her to the new owner, the following day. We miss her.
   The day we brought "Yellow Boat" home was the day of my final Provenge infusion. We left the infusion center and went directly to the marina. I promised Mandy that "If we can take her home, I would live long enough to pay her off." If we had kept her, she would be paid off next year! She was such a good boat and we have priceless memories aboard her that we will treasure for a lifetime.
 
    

All good things must come to an end. Goodbye "Yellow Boat"

Hello Blue................
 

 We love the water. Boating is what we do. We spend every sunny day on the water from April through September. We actually were not looking to buy a new boat. Going to the Seattle boat show was simply something to do on a rainy day. We had went to the Portland boat show a few weeks earlier and decided then that we were not interested in a new boat. 
Oh well, I didn't want to retire anyway. 
We do not have buyers remorse. Blue will be our last boat. I can't wait for the rain to stop falling so we can get her out on the water. 

PCRI videos

https://youtu.be/ZcCdpg1ki8Y

Monday, February 27, 2017

100K Views

   This is a post of gratitude to all of you who read and or follow my blog. This past week my view count surpassed 100,000. Thank you.
   I know I am not the best writer so reaching this goal is an honor. It has taken a couple years to get here. In the beginning, I would get 30 or so hits a day. In the last few months that number has increased to several hundred a day. 
  I write to share hope. I write to let people know that cancer does not have to be a death sentence. I hope that by telling my story it can inpire others to really live each day inspite of serious health issues.
  There is nothing more to say. 
Thank you!!

Monday, February 20, 2017

Springtime needs to hurry and arrive!

   Each year about this time I begin to  feel like a cancer patient. Southwest Washington winters are brutal in their own way. They are not bitter cold like the Midwest. We don't get feet of snow like the east coast. (Actually, this year we did) Winters here are dreary. The sky's are grey. The air is cold but not cold enough to snow. We are assaulted for several months by cold rain, low clouds, and darkness.         
      The human Body needs sunlight to function properly. Without it, our brain does not receive the feel good chemical, serotonin. Lack of serotonin leads to fatigue, depression, and  lethargy.  Today I am the epitome of lethargic. My tan has faded  I look pale and pasty. I feel as though I look like death! 
   Every year, for the last four, during early spring, we have we have hopped on a plane for white sand destinations. Every year but this year.  
   This year we decided to stay home, do some home repairs, and enjoy all the Pacific Northwest has to offer. The northwest seems to offer cold rain or snow this year. I am not complaining. Actually, I am complaining. I need sun. I need warm air. I am really over winter. I think the grey sky and cold rain is affecting my sanity. We bought this yesterday.
 
Come on summer... get here soon.

Friday, January 27, 2017

Change can be good but also stressful

   January 1st brought with it a change in my insurance. It was a much needed change but it has included a lot of stress as well. 
   As 2016 came to a close, I saw my Kaiser oncologist for the last time, received an infusion of Zometa, got another month of Zytiga, and had nurse ratchet give me my last Lupron injection at the Kaiser nurse treatment center. I scheduled an appointment with my new oncologist and obtained a referral for a new urologist at Providence Cancer Center in Portland, Oregon. Thinking I had all my ducks in a row, I took a vacation over Christmas and settled in to enjoy the holidays and some much needed time off work.
   As it turns out I should have been just a tad more diligent. I didn't understand how the new insurance worked. I was use to Kaiser Permanente. It's a cold hearted comparison but Kaiser is a lot like Walmart. (The good part) Kaiser is one stop healthcare. On a typical Kaiser appointment, I would arrive half an hour early, give blood to the vampires, stop off at nurse treatment for a Lupron shot, limp down to Oncology, see the oncologist, get my Zometa infusion, harass the M.A, as well as the pharmacy staff, (in a good way) and pick up my prescriptions on my way out the door. A few hours later, my blood tests would be posted online.
   I guess that after being with Kaiser for 15 years, I assumed the new system would be comparable.
   

   I saw my doctor on the 23rd. Prescription written, blood work done, results came back yesterday. All is good. PSA is in the basement.  Actually it is under the concrete floor in the basement. Doing great. On Wednesday, February 2, I will be out of medication. My Zytiga bottle will be empty. I am still awaiting financial authorization for the prescription to be faxed to the pharmacy. The pharmacy said it will take up to two weeks for the drug to be delivered once they receive the prescription. I am losing my mind at the moment. 
   I compared Kaiser to Walmart. In many ways it is a fair comparison. One stop shopping, convenience, efficiency. All very good qualities. I do not regret the move to Providence but I do wish I had done more research and gotten the wheels turning before the first of the year. At least that would take the stress out of the learning curve. 


This last paragraph is an update. As it turns out all my stress was for nothing. Some very good people went to bat for me and my medication will arrive before I take my last dose. My co-pay was $1500 for the first month supply. I have to give kudos to the staff at Providence cancer center for taking the initiative to get me a coupon for co-pay assistance. I will pay $10 of the $1500 that I am responsible for. Have a great weekend people best regards. Todd

Tuesday, January 24, 2017

That's a wrap

Dendreon and Cadient invaded our home Saturday to finish filming the video project started last weekend in Las Vegas. I am certain I understand how aquarium fish feel. 
    To take advantage of morning sunlight, we began with B-roll filming. I felt a little strange walking through the neighborhood carrying my fishing pole and tackle box and being followed by a camera crew. All the neighbors had to come out and watch. I ended the morning with a country song stuck in my head. "Everybody dies famous in a small town" 
   After shooting some B-Roll footage we filmed the interview portion. I think it went pretty well. The entire interview segment lasted an hour and then we moved on to more B-Roll stuff. After 7 hours of filming, we were done. Our home had been put back together and Mandy and I were alone.
 

  I look forward to seeing the finished product. 

   For me, the entire Provenge experience has been amazing. The people of Dendreon are a great bunch of good hearted people. The process of receiving the treatment was relatively easy. The side effects were minimal and I cannot complain about the outcome. I have an ongoing relationship with many of the Dendreon staff but that no way effects my opinion or advocation of the treatment. To put it simply, it's good stuff.
      
 
I received my first Provenge treatment in May of 2012. I completed the therapy June 1, 2012. Within hours of my final Provenge infusion, we bought a new boat. I believed I would have a future to enjoy it.
 
We have spent nearly all of our free time on it for 5 straight summers. Yesterday, after 10 years and 8 months of fighting the beast, I saw a new oncologist at Providence Cancer Center in Portland, Oregon. He is brilliant, professional, and is considered one of the best in the Nation. He was optimistic and feels that receiving Provenge again, may be beneficial to my overall survival. Blood was drawn for a PSA test at a new lab. Today my results were posted online. My current PSA is less than 0.01 Based on this new information and optimism for a future, we may just have to pull the trigger on this sweet ride.
Isn't she a beauty. 
Well maybe not. We love our boat. Time will tell but one thing is certain. Time is a luxury I can afford. God bless all of you for reading and following.......Todd 

Sunday, January 22, 2017

A Legacy of Hope.

   Early in my diagnosis I lived online. Some of my favorite sites were ask Jeeves, Google, and Yahoo search. I always asked the same question! How long will I live with Stage IV prostate cancer. I played spider solitaire making deals with God. "If I win this game Lord, it means I will live 20 years" Strange stuff! I would try anything to instill a feeling of hope. I spent countless hours reading clinical trail data. I searched for new treatment options. I searched for advanced stage guys who were doing well. I tabulated new treatments that had been approved and those seeking approval. At one time I had a list of 20 or so treatments. My rationale, "If I can get 6 months out of each one then I will live 10 more years. I dreamed of the impossible. I dreamed of being cured. Days turned to weeks, weeks to months, and months to years. It has now been over a decade. Sometime I look back in disbelief and yet I am not surprised. Even though I could not be cured I always believe I would do well against the beast. 
   In the last 128 months since my diagnosis there have been many advances in cancer research. New and amazing treatments are being made available to patients every year. Hope is manifest. Hope breeds hope. We have survived the dark night. One day cancer will be a footnote. I believe I will live to see that day.
   
   

Monday, January 16, 2017

New thoughts on treatment

Friday night January, 13, 2017 at 8:30 PM after working the entire day I boarded a Southwest flight for Las Vegas. The purpose of my visit was to participate in the making of a patient facing video for Dendreon. I checked in to my hotel and finally got to my room at midnight. After a quick shower and brushing my teeth I went to bed. I had an 8 AM wake up call. 
At 9:15 Saturday morning I left my hotel and rode over to comprehensive cancer center. The video is a representation of a hormone refractory patient going to his oncologist to be prescribed Provenge therapy. The film crew was very professional and I was really at ease with the process. Nicholas Vogelzang played himself and I played the part of the patient. What surprised me the most however was that Nick treated it like a genuine appointment. Maybe that's what made it so easy. 
Keep in mind that throughout my battle with this disease, I have never had a Doctor who is considered an expert in the field like Nick is. Throughout the day I was able to have a ton of one on one interaction with one of the finest prostate cancer oncologist in the field. I asked a ton of questions and took A lot of mental notes. 
   
 
 Nick spoke of things regarding my treatment that I did not believe were possible. He spoke of curative treatment. He recommended that I consider having my prostate removed or at the very least consider Brachytherapy. He also believes that my history shows a tendency towards having a BRCA mutation. He recommends me being tested for it. 
   After we finished shooting Tony Crispino, his wife Ruthie, and I went out to lunch before they drove me to the airport. It is 1019 and I am almost home again. It was a whirlwind trip and one I will not soon forget. I have many things to think about. I may have some treatment decisions in my future. All I really know at the moment is it sure is good to be home.
    If I have a BRCA mutation then I am told that it is both a good and a bad thing. The bad equates to how quickly it spreads throughout the bones and other organs. Another negative aspect is that the gene is hereditary. I may very well pass it on to my offspring.
   On the positive side, this type of PCa. responds very well to hormone therapy indefinitely. It may be possible for to participate in intermittent hormone therapy.
   The other question I have to consider is whether or not I want my prostate treated. There is a chance that if I do then I might be cured. 
Cured!!!!
That is a really big word.
I have said in previous posts that I envy the cured. Now I am not so sure. I have been in remission for 5 years. It's true I would love some testosterone but other than that I have it pretty good. I am still capable of physical intimacy. I don't wet myself. I have a great life. Surgery could really screw all of that up. If I had surgery I might never again have an erection. So much to think about.

Saturday, January 14, 2017

Snow Day

 Wednesday, January 11, 2017.  We woke up to a fresh snowfall. Mother Nature dumped a foot of snow on us over night. It was beautiful. I was halfway to work when I realized that getting a foot of snow in Southwest Washington is too rare an event to squander at work. It wasn't responsible. It wasn't the adult thing to do. It was, however, the best decision I could have made. Michaela didn't have classes. Amanda's clinic was closed for the day. It was time to do something I hadn't done since high school. It was time to take a snow day.
   I started the morning with every intention of going to work. I didn't sleep well the night before. I have been having extreme pain in my left shoulder and arm for the last week or so. I jammed my neck while at work and so far the chiropractor has not been able to loosen things up. The pain is an 8 at times. Sleep does not come easy when your mind is consumed by pain. Somewhere around midnight I moved to the sofa so as not to wake Mandy. Oddly enough, I drifted off shortly thereafter.
   The alarm came far too early. I hate 5:00 a.m. I got up, made coffee, took my meds, and looked out the window. 
 
6 inches of snow had fallen and it was still coming down. I rushed outside and plugged the Christmas lights in and then took this picture.  The snow was just too pretty to not have a Kodak moment. "Is there still such a thing?" After taking the picture I woke Amanda and we shared coffee and morning news before I got dressed for work. 
   I left for work at 6:00 and made it about 5 miles before I decided to call my boss and take my last PTO day. 
 
I pulled into our driveway about 15 minutes after leaving for work. After sharing another cup of coffee with Amanda We put on our snow clothes and went for a walk around the neighborhood. For the last few weeks the temperatures have not risen above freezing. Silver lake is frozen solid. Seeing the lake with 6 inches of fresh snow on the frozen service was absolutely breathtaking. We stopped at a boat dock to take a selfie. We finished our walk and woke our daughter. We had a hot breakfast and then the three of us went outside to play in the snow. 
   We stayed outdoors most of the day. We took one of the snowmobiles out and hooked a sled to it. We took turns towing each other around the neighborhood. It wasn't long befor the rest of the neighbors took notice. Suddenly everybody wanted to go for a ride. We were happy to oblige.
 
   Later in the afternoon, we drove to my mom's house and went for a 3 mile walk in the snow.  It was good to hang out with her.
   I have said over and over that cancer changed my life. Our snow day was an example of that change. Prior to cancer I would not have taken the day off. I would have went to work and missed the opportunity to spend a day with my family.  It is sad that it took a terminal cancer diagnosis to show me what is important in life but I am very grateful that it happened. 

Friday, January 6, 2017

Winner Winner Chicken Dinner

 
   My blog received the honor of best prostate cancer blog 2016 by healthline.com
   I'm not sure it is an honor I deserve but I am grateful for the recognition. There are many others who deliver current pertinent information more effectively than I. My blog is just a story. It is my wish that it inspires others to hopefulness. If my writing can help just one person than it has achieved its purpose. 
   Thank everyone for reading. There are many times I don't have anything to say so I don't write. I pray that cancer becomes so mundane that I never have to talk about it again. Wouldn't that be awesome? To never have to talk about cancer in a blog about living with cancer! 
   I hope everyone is having a great start to 2017. Tick tick tick tick tick! Do something today worth living for.

Tuesday, January 3, 2017

My Prostatepedia Interview with Jessica Myers-Shecter









http://www.prostatepedia.net/

Another New Chapter Begins.

   2017 begins a new chapter in my journey. I have been with Kaiser Permanente exclusively since my journey began 127 months ago. As of New Years Day I have new insurance and a new oncologist. There is still much to do and many unanswered questions. Kaiser was like Walmart in some regards. Everything was in one location. Appointments were easy. Typically, I would arrive half an hour early, have blood drawn at the lab, and by the time I saw the doctor, my test results were back. On my way out the door, I would pick up my prescriptions and head home. 5 hours later my PSA results would be posted online.
   I have a new oncologist. He is one of the best in the country. That is all I have. I need to find a PCP and a Urologist. Where do my labs get drawn? Where do I get prescriptions?  How do I find out lab results? Where do I get infusions? So many questions! Frankly, I lack the motivation to seek out the answers. I am so tired of cancer. I am tired of doctors and needle sticks and the uncertainty that comes with a cancer diagnosis. 
  I suppose my questions will all be answered in time but as with everything else regarding this disease, the trepidation exists only in that which is in the shadows. That is, after all, where the monsters lurk.

Sunday, January 1, 2017

Goodbye 2016

   Vacation started at 2:00 P.M. Christmas Eve. We didn't go anywhere. We had no plans. We had 9 days to be at home and do whatever we felt like doing.  We spent Christmas Eve with family at my brothers house.. It was loud, chaotic, and just a ton of fun. On Christmas Day  we had a quiet morning with our daughter and then Mandy and I went for a hike in the snow near Mt. St. Helens. 
We hiked the perimeter trail of Coldwater Lake. It was just the two of us and it was a wonderful way to spend Christmas together. The lake itself was formed during the eruption in 1980. It is a place of rare and natural beauty. Except for the hiking trails created by the forest service, the entire monument is untouched by humans.  There are stiff fines for stepping off the trail even if it is only a few feet. 
    Monday was a day of rest. We slept in until 9:00a.m. , made coffee, had breakfast, and stayed in our pajamas most of the day. Our daughter gave me star wars pajamas for Christmas. I was happy to wear them as long as possible.
 
   Tuesday, Amanda and I left the house early and headed up the mountain with snowmobiles in tow. Old man weather had dumped a foot of snow the previous night . We cut fresh trails through the powder as we climbed higher and higher up the mountain roads.
 
 
It was absolutely stunning to be at the top of the hill gazing down at the valley below. We went riding every day over the next 3 days. Each day we rode through fresh snow that had fallen the night before. 
   Thursday night we put the sleds away. We planned a different kind of winter activity for the following day.
   Friday morning I arose at the butt crack of dawn, made coffee , and started cooking breakfast. I woke the girls at 5:30. Soon after, we loaded up the truck and headed south to Mt. Hood for a day on the ski slopes. I haven't skied much in the last 10 years. When I was in my teens and early 20's I went skiing several times a year. I use to be pretty good. That was a long time ago. I must admit I was a little apprehensive as I locked into the binding and headed for the ski lift but it was all for not. Two minutes into my first run of the day it all came back to me. I crashed a couple of times. Nothing serious! The only difference was the struggle it took to get back up. Finally, I just clicked out my bindings and stood up. Why fight it?  By the end of the day I was flying down the mountain like I was a kid again.
 
It was an awesome day. The weather was perfect. It snowed lightly throughout the day. Occasionally the clouds would clear revealing an Ice Blue Sky. As the sun set I rode the lift to the top of the hill. Mt. Hood glowed pink in the setting sun. Spectacular. 
    
                        Happy New Year!!
   New Year's Eve was Quiet. Amanda and I had drinks beside the fire as we watched the ball drop in Time Square. Our Pekingese was the most festive of the three of us. We talked about resolutions and the highs and lows of the previous year. It was a peaceful evening.
   After midnight we watched SNL and waited for our daughter to get home from her date. We stayed awake until 2 which is about 4 hours past our bedtime. 
   Today we awoke to a new year ripe with possibilities. The ground was bare and wet. In the two hours that passed since we got up, 6 inches of snow has fallen. The world is beautiful.
   It is 2017 and my last day of vacation. I am dreading my return to work but I am happy my health is still good enough that I can work.  I rarely think about cancer. It has been 10 years and 7 months since my diagnosis. We continue to live life every day in spite of cancer. Life is a blessing.
We  will continue to treasure this wonderful gift. We will continue doing our best to never waste a moment. 2017 is a mystery. It's secrets will take a year to be revealed. No matter what a given day has in store for us, we will live it to the very best of our ability. Todd