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. 
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
   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

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