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.