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.

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

   

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

   

$&@# 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. 

   

   

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. 

   

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"

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.