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