Saturday, September 1, 2018

Your Never Too Old


  This year was the summer of the wakeboard. I have been an avid water sports enthusiast my entire life. Somehow being active on the water just puts everything into perspective. Last year we upgraded our boat and the new one has a tower and came with a wakeboard. I tried wakebarding in my early 20’s but never really did it enough to be considered a wakeboarder. I would rather slalom ski anyway. 
   This year I decided to see what all the fuss was about. I am really glad I did. What a blast!
   At first I wasn’t too good. I kept trying to ride the board like a ski! It usually ended rather ugly.


   This one hurt pretty bad. Eventually I started to get the hang of it and by last weekend I had learned to fly. 
   I will be 55 in December. I have been fighting Stage 4 Prostate Cancer for over 12 years now. I continue to do well in the fight. We only get one life that we know of. Despite Cancer I will continue to live life to the fullest as long as God allows me to.

The Importance of Prostate Cancer Screening

   Today, Saturday, September 1, begins national prostate cancer awareness month. Today, I want to talk to you about Prostate cancer screening. Please click link to read my article at Prostatecancer.net
  

Tuesday, August 28, 2018

P.C. Claims a good man

   This post is about saying goodbye to a courageous prostate cancer warrior, advocate, and friend. Rob Barniskis passed away from prostate cancer late Friday Evening from his ten year battle with advanced prostate cancer. He leaves behind his wife, sons, and a Huge hole within the advocacy community. He will truly be missed.
    Rob’s battle with prostate cancer begin 10 years ago with an advanced diagnosis. The cancer was aggressive and quickly spread to his soft tissue. He fought bravely for his family himself and others within the community. The cancer was ultimately untreatable.
    I first met Rob two years ago at PCRI. He and I were both members of Share Network and co-presenters  unveiling the “My Prostate Cancer Roadmap” website sponsored by Janssen Oncology. We quickly became friends. We had shared similar paths in our journey. We had both been on Zytiga for 3 years. We both worked within the advocacy community. Due to liver metastasis he was not eligible to receive Provenge. 
   Shortly after PCRI Rob began to fail Zytiga. Due to cross-resistance Xtandi was not effective against the cancer. Rob went on Chemotherapy and other treatments as he attempted to get the upper hand on the cancer. Sadly it was not to be. He confided in me a couple months ago that his body was tiring of the fight.
   I last heard from Rob 2 weeks ago. He was transferring to home hospice care and was essentially saying goodbye. He told me he would be waiting on the other side.
   Rob is just another good man who lost his fight against this stupid disease. How many more will we lose before we finally defeat the beast. How many Grandfathers, Fathers, Sons, and Friends will we prematurely say goodbye to because of Prostate Cancer.
  I am tired of losing friends. It is time to cureProstate Cancer once and For All.

Friday, August 10, 2018

5 Years on Zytiga

   My how time flies. It is August already. As of the first I have begun month number 60 on Zytiga. My last Oncology appointment was July, 24. My numbers remain undetectable. I continue to be amazed by the overall success I have experienced throughout the course of the last 12 years. 
   There were some changes made at my last appointment. I will no longer be taking Zometa for bone density. Apparently the latest studies have shown that 2 years is the optimal duration to receive Zometa. Any longer than that and it is possible the drug can begin to weaken your bones. I have been on biphosphonates for almost 5 years. Doh!

   I did not see my doctor but rather the P.A. I am fine with that as my disease is stable.

  Some of the questions I had however could not be answered by her. We discussed going off treatment but she said I must discuss that with the Doctor. My next appointment is not until November but it will be with the Doctor and we will discuss those options at that time. 
   I am not sure how and when it happened but I have grown very complacent in regards to cancer. I cannot remember the last time I reviewed clinical trial data. I have been too busy living life. 

We have spent much of the summer as we always do. On the water! Since the end of May, there have been very few weekends at home. I have spent as much time as possible learning to wakeboard better. My goal was to complete a backflip by summers end but after my last crash I am rethinking that goal. Wake boarding might be a lot slower than Slalom Skiing but the wipeouts hurt far worse. Imagine traveling at 25 mph and having your feet suddenly stop. Ouch!

   Two weeks ago my  sweetheart and I became empty nesters when our 20 year old decided it was time to fly away. She lives a mere 8 miles away but I cannot believe the difference in our lives. We have never experienced having the house to ourselves. It is so peaceful. We are finding out what it would have been like had we met in our teens. It has been kind of fun.


A few weeks ago my adult daughter came up from Texas for an extended visit. She is back home now but while she was here, I taught my granddaughters to waterski. 
   I am so thrilled to still be here to share my life. It has been an amazing 12 years. At the time of diagnosis my granddaughters were not even born. Now my eldest is 12 Years old. My life is filled with love and adventure but also with sadness at times. I found out only 2 days ago that I will soon be losing another friend to this disease. It makes me so angry. We need a cure for this disease. Until we have a cure, I will do my best to be here to share a message of hope. One thing is certain. We all die. Not everyone truly lives. I am happy to say that my friend learned early in diagnosis to live his life. I encourage all of you to do the same. Do not waste a single day of this remarkable gift we call life. Todd

   

Wednesday, August 8, 2018

Survey opportunity. $50 Amazon gift card reward.

I just took a really simple survey and received a $50 Amazon gift card for doing so. They are looking for 15 more persons to take this survey. Qualified persons are prostate cancer patient advocates who can speak about metastatic prostate cancer. You do not have to have metastatic prostate cancer. They must also be willing to call and record their answers. Once they have called and reported their answers they will be paid eight $50 Amazon gift card. It was super easy. I think there may have been 10 questions. I will post the link below. Simply click the link and follow the instructions.

Wednesday, June 6, 2018

12 Years

Today is my 12 year anniversary since diagnosis. I find myself thinking “WOW, has it really been 12 years.” It has! 12 amazing wonderful years. 12 Years I was not suppose to have. Time has flown by. Nothing much has changed and yet everything has changed.
   When I was diagnosed the future was uncertain. It still is but life goes on. At diagnosis my PSA was 3200  and metastasis was everywhere. Today both PSA and Metastasis are undetectable. I have been on 6 different medications over the years. I have had tremendous success with all of them.To date I have been on Lupron, D.E.S., Casodex, Provenge, Zytiga with Prednisone, and Zometa for bone strength. I have been on Zytiga for 57 months now. I have been on Lupron for 12 Years. 
   The summer of ‘06 was a rough one. The entire summer it seems was spent being scanned and probed. Uncertainty was the norm. It was a time of spiritual and emotional growth. 
   I am happy to still be here among the living while so many of my friends are not. Research has come along way in the last 12 Years but there is still much to do. We cannot rest until no man ever dies of prostate cancer.
   

Tuesday, May 8, 2018

Good news bad news

Well, Today I had my second dental appointment at the Oregon health science University dental school. My rationale for going to the dental school was this. I need a dental implant. I can’t afford to do that at one of the local dentists and I could save a lot of money by going to the dental school. At my last oncology appointment I decided to forgo my Zometa infusion. My oncologist had informed me that the only way I could get a dental implant was to be off of the medication four months prior to the implant and an additional four months after the work has been completed. To me, my plan was a good one. Today my plan basically blew up in my face. The instructor at the dental school informed me that there was no way I would ever receive an implant. In his words, the intravenous biophosophate Zometa, stays in your bones for up to 10 years. The risk of osteonecrosis of the jaw is too great.What is osteonecrosis? Well, in layman’s‘ terms it means bone death. Honestly, there is only a 3% risk of developing ostia necrosis but the dentist feels that 3% is too great of a risk. That my friends is the bad news. I may soon be gumming my good. Actually that’s not quite true. I have many good teeth I just have one that broke off at the Gum level and it makes me feel incredibly bad about myself. 
   After reading and article about osteonecrosis of the jaw I decided my dentist was right. I don’t want to take the risk. I guess I will soon go back on Zometa.
    OK everyone so that is the bad news. There was also some good news. I have very little gum recession. Other than the broken tooth I had very little dental work that needs to be done. There is also some other really good news. The broken tooth doesn’t have any decay. The root canal underneath it does not have any appearance of leakage. They also have a plan to fix it. For a few weeks, I will have a bridge across the two teeth that are next to the broken one. They will put an anchor in the tooth and use  a elastic band to gently pull the tooth out of it’s socket. By doing this slowly the bone will grow around the root. When the tooth is above the gum far enough they will do a post and build and then put a crown on it. Hurray... the dentist is going to grow me a new tooth.
   Well that is all for this update. Summer is coming. Yolo