Tuesday, December 18, 2018

Drug withdrawal

   I am a little more than two weeks into this new chapter of my journey with advanced prostate cancer. 16 days ago was the last time I had any Zytiga. I continue to take prednisone daily. It has been a fairly smooth transition. The mild nausea I had grown accustom to is gone. It was never really bad to begin with but it was always there. So far, my adrenal system has not started up yet. I am suppose to begin weening myself off of the Prednisone but when I try I feel extremely fatigued. I will try again in another few weeks. Another positive note is that my mental cognitivity appears to be getting a little better. 
   I had an MRI on my right knee on the 13th. The results came back yesterday and it appears that orthoscopic surgery is in my future. I have what is referred to as a bucket handle meniscus tear. I googled it... I looked at some photos but that is pretty much all I know about it. I know it hurts and surgery will make the pain go away. 
   I have only been under the knife twice in my life. Once for tonsils and another time to remove a bladder stone. I love the euphoric feeling of waking up from anesthesia. Feels like I have slept for a month. 
   It appears old age is taking its toll. Both of my knees are about shot as well as my left shoulder. I have lived long enough to fall apart. It’s kind of wept but that makes me happy.

Monday, December 10, 2018

A new chapter

   I have expressed in the past how difficult it has been to keep my blog fresh when quite frankly, I have had absolutely nothing to write about.. For the last five years, nothing has changed. 
   Finally, I have something to write about. Last Monday at my oncology appointment, my oncologist and I agreed that if my PSA test came back as undetectable again then I would be taken off of treatment. Five hours later, the results were in and once again my PSA was less than 0.01! Tuesday morning was the first day in 63 months that didn’t start with 4  Zytiga pills. I did not receive a Lupron shot at my oncology appointment. Hopefully I will not be receiving one for a long time.
    My last treatment holiday began in January 2010 and lasted for a little over a year. During that time, my testosterone never really came back all that much but my PSA begin to double every six weeks. I went back on androgen deprivation therapy in the early spring of 2011 and have been on it ever since. Currently I have no detectable testosterone in my system. I have not known what it’s like to have a libido in 12 1/2 years. I don’t know what to expect from this treatment holiday so I will be keeping my expectations relatively low. I have hopes! I will just have to see if any of them come to fruition.
   Going on holiday is not without risk. That is the reason my physicians have been reluctant to allow this in the past. You may ask, what has changed? The answer is nothing. Nothing has changed. There are still risks. It is possible that the cancer could mutate and be harder to control in the future. Nobody really knows.
   There are also benefits to a treatment holiday. It is fairly well documented that androgen deprivation is hard on a mans cardiovascular system. Men’s body’s are designed to run on Testosterone. Without it, nothing works as it is suppose to.  An ADT holiday, if it lasts for a while, could help me shed pounds, build muscle, and increase depressed mental cognitivity. 
   So far blnothing feels different. I would appreciate any prayers or positive thoughts Y’all want to send my way. Todd

Friday, September 21, 2018


   If you have bone metastasis or have been on Androgen Deprivation Therapy for any length of time, your Physician may prescribe Bisphosphonates to strengthen your bones and delay onset of osteoporosis.

Bisphosphonates are a class of drugs that prevent the loss of bone density and are used to treat osteoporosis and similar diseases. They are the most commonly prescribed drugs used to treat osteoporosis. Evidence shows that they reduce the risk of fracture.

Bone tissue undergoes constant rebuilding and is kept balanced by (osteoblast creating bone) and (osteoclasts Destroying bone). Bisphosphonates keep bone matter from being absorbed by encouraging osteoclasts to undergo cell death,  slowing bone loss.

The uses of bisphosphonates include the prevention and treatment of osteoporosis , bone metastasis , and other conditions that cause bone fragility.

Bisphosphonates, when administered intravenously for the treatment of cancer, have been associated with osteonecrosis ( Bone Death ) of  the jaw with most cases occurring following high-dose intravenous administration used for some cancer patients. Some 60% of cases are preceded by a dental surgical procedure (that involves the bone), and it has been suggested that bisphosphonate treatment should be postponed until after any dental work to eliminate potential sites of infection. A number of cases of severe bone, joint, or musculoskeletal pain have also been reported. Common Bisphosphonate names are Pamidronate, Neridronate  Olpadronate  Fosamax Boniva Actonel and Zometa. There are others. 

    How doctors prescribe Bisphosphonates has evolved over time. Standard practice several years ago called for monthly ongoing infusions. It was then discovered that patients received the same benefit if they only received an infusion every 4 months. Recently studied have shown patients should receive Bisphosphonates no more than two years. Longer use can lead to bone softening and fracture risks. It appears that after 2 years the drug has the potential to do more harm than good.

   If  your doctor feels you may need Bisphosphonates, it is important to have a complete Dental Examination to determine if you are in need of any dental work requiring bone involvement. Examples include, extractions, implants, and gum tissue grafts. If you require dental work it is important to have it all work completed prior to starting treatment. Bisphosphonates have a half life of 10 years or so and you cannot have any dental work involving bone until the medication is no longer in your bones.

   Bisphosphonates are a very effective treatment and are well tolerated by most patients. They are effective against osteoporosis and treating bone metastasis by slowing the growth of tumors on the bone.

Appointment anxiety

   I have been dealing with this disease for over 12 years now. 12 Years, 2 months, and 7 days to be exact. I wish I could tell you that appointment anxiety gets better but for me it has pretty much stayed the same. The only difference now is that instead of monthly anxiety I only have to go through it 3 times a year. It is always the same. A week before my appointment I begin to feel phantom symptoms. The day of my appointment I am stressed out. After the appointment I am glued to my phone until my PSA comes back. Once I get the test results I pour a glass of Willamette Vinyard’s Pinot Noir and celebrate the results. It use to be much worse but there are things I have learned to minimize the stress of oncology visits.

   The first thing that changed appointment anxiety was making peace with the disease and my own mortality. The process began when our band played at a benefit for a 4 year old little girl who was battling a rare cancer and was losing the fight. Afterward I could not look at my situation the same. She was only 4 Years old. She had never known what it was like to be a little girl. Her entire life was cancer, doctors, chemo, sickness, and hospitals. We all leave this world. My life, despite the challenges and pitfalls, has been amazing. There are many things that I still want to see and do but I have not wasted a day since my diagnosis so when it is my time I hope not to have regrets.
   Another thing that helps anxiety is the realization that PSA is just a number. I have been blessed with non existent PSA for 5 years now but even if it rises it simply means that things will once again be changing. My original PSA was over 3200. I have a long way to go before I see those numbers again. 
   I prepare for my oncology appointment by writing down any questions or concerns that I might have and take those to my appointment. I don’t leave until I feel my doctor has answered them all to my satisfaction. 

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

Monday, May 7, 2018

The power of Potassium

   I have been feeling ill as of late. Really! Sick, tired, just really crappy. Last week it dawned on me that I have been out of Potassium for almost a month. Friday I bought a bottle and started taking it immediately. Taking potassium has made a huge difference. The nausea I have been feeling for the past several weeks is gone. I have more energy. The muscle cramping I have been experiencing has been largely illiminated.
   Blood tests over the course of the last year have shown my potassium level to be borderline low. I don’t know if that is because of the Zytiga or because of the prednisone. It really doesn’t matter either way. My potassium level has never been low enough to flag so it has largely gone unnoticed. 
    Low potassium { hypokalemia }causes a host of problems. Most people associate low potassium with muscle cramps. Potassium however does so much more. The heart muscle requires potassium in order to beat properly. Potassium is essential for blood pressure regulation. Maybe that is why for the first time in my life I have had to be put on blood pressure medicine. Symptoms of low potassium include muscle fatigue, Nausea, abdominal cramps, bloating, irregular heartbeat, excessive urination, fainting, depression and mood swings, numbness in muscle tissue, and tingling.
   On the other hand, high potassium levels can cause many of the same symptoms. Low potassium is rare therefore there is no recommended daily allowance it is however widely believed that 1600-2000 mg. is  addequate for most adults. This can vary due to work stress, climate and humidity. If  we sweat a lot we lose valuable electrolytes such as sodium, chloride, and potassium.
   Foods high in Potassium include among others, Avacados, acorn squash, sweet potatoes, spinach, wild-caught salmon, pomegranate, dried apricots, coconut water, white beans, and of course, bananas. Interestingly enough, bananas have the least amount of Potassium of all of these.
   In regards to the list above, I eat salmon once every couple of weeks, regularly drink Pom juice, and eat bananas. It has not been enough to keep my Potassium at an acceptable level. I work in a hot, humid environment and therefore I sweat a lot.
  Potassium is a balancing act. Blood potassium needs to be monitored. Potassium should not be supplemented except under the advice of a physician. If you have not been feeling like yourself however it may be worth looking at your potassium level.
That’s all for today. Todd

Saturday, April 21, 2018

Taking a toll

   A couple of weeks ago, a document was floating around the Mill site where I work. The document gave a comparison based on US statistics showing average age of retirement versus average age of death. The document showed that for every year worked after age 58 the average age of death accelerated by 3 years. After the last month, I believe it.
   It has been an unbelievably difficult month. It started several weeks ago as we began a bathroom remodel. Our home is 40 years old. Once upon a time it was a  rental house. After the previous owner’s husband passed away his widow decided to get out of the rental business. Her daughter and brother who is a general contractor polished the place up and put it on the market. Obviously, they used the cheapest material available. The house looked good but we have had to redo almost everything. Last year we considered selling and purchasing a new house. The problem with that however is that we love where we live. after much thought we made the decision to keep our home and make it exactly what we wanted. What are years ago, it would’ve been an easy task to undertake. Back then I had tons of energy. I’m starting to realize the older you get the more difficult it is to do it all. 
   Mandy deserves a new bathroom. She deserves the front porch with a swing. Our camper deserves it covered place to park it. Our snowmobiles deserve to be out of the weather. I can do most of the things that need to be done but quite frankly I’m getting tired. 

   This is what the bathroom looks like two days after making the decision to update it.

    This is what it looks like today. All that is left is to install new doors, trim, and to tile the shower surround around the tub. In regards to the bathroom I can see the light at the end of the tunnel. It would’ve been done where it not for and event that started Sunday last.
   Sunday morning while drinking coffee and watching the news I noticed that every light in the house was flickering. Puzzled by what was occurring, l begin to troubleshoot. Starting at one end of the house, I work my way towards the garage and the breaker panel. Nothing seem to be out of place or overloaded but as I approach the breaker panel I heard a noise that sounded much like bacon frying. The conduit from the meter head to the breaker panel was hot to the touch. Thinking there was a problem with the meter I shut off all of the breakers and called the PUD. They arrived an hour later and shut off our power. There was nothing wrong with the meter. They told me however, power  would not be restored until repairs to our electrical system were completed. 5 days and a thousand dollars later, the lights are back on. Thank God I have good friends who are electricians or the financial burden would have been much higher. 
   I had to take Thursday off of work. The electrical inspector was coming and I needed to be there. I suppose I could’ve called in sick but it is difficult for me to lie. It is Saturday, April 21 and I am at work making up for the time I lost.
  The alarm startled me this morning. I was sleeping heavily. My face in the mirror looked haggard. I think I need a vacation.

Wednesday, April 4, 2018

April 4 2018

   Ten years ago today we moved into our home. It is also my late mother in law’s birthday. Mandy bought a bottle of wine to celebrate both tonight. She would have bought a bottle anyway as it is “Wine Wednesday” but tonight we have an extra reason for libations.  
    When Mandy and I met, we were poor. I was recovering from a 3 year life setback and Mandy was a single mom. Our credit was in the toilet. Mine was worse than hers. We lived in a dilapidated double wide trailer for our first two years together as we worked toward our goal of owning a home. Six months after our wedding “Highline Homes” told us we qualified to have a new home built. The market was tanking at the time and although our credit was better I was still nervous about qualifying for the loan. They told us we qualified however and convinced us to write a $1700 check. Three days later our loan was denied and they kept our money. Highline homes stole $1700 from us in my opinion. We were devastated. We were so poor that it felt as though we lost a million dollars. The Realtor we were working with convinced us to talk to a mortgage lender she had worked with. He was a terrific human being and pre-qualified is for a home loan in a matter of days. It was not a construction loan mind you. He stated “ I have been in this business for 40 years and there is no way in hell I could qualify you for a construction loan. Highline knew you didn’t qualify and simply wanted your money” This fueled my ire to no end but the money was gone and we were going to get a home of our own. Chalk it up to a learning experience.
   We looked at several houses before making an offer on our home. Once the offer was accepted and the process began, we would drive to the house 2-3 times a week to walk the neighborhood or sit on the deck. We bought furniture. We bought paint. We counted the days. It felt as though it would never happen but on April 4, we signed papers and took possession. It was the most amazing feeling in the world. 
   We have come so far in the last 10 years. Looking back it feels like a dream. We did very little that first year but after that we set about making our home a reflection of who we are as a couple. To date we have remodeled the kitchen and brought the laundry room in from the garage. We have tiled, painted, recarpeted, and remodeled both bathrooms. We are in the home stretch now. Only a few projects remain and they are in process. 
   We had only lived on the lake for a year before buying our first boat.! You cant live on a lake and not have a boat. We have upgraded twice since then. We won’t be upgrading again.
   It is strange to me that I had nothing 12 years ago. No money, no possessions of value, and from what my doctors said, no future. Today, I am married to the love of my life, relatively healthy, and have everything I ever wanted in life. I am a blessed man. 
   Tonight I will tip a glass of good red wine and remember and appreciate all we have been through and our many blessings. 

Tuesday, April 3, 2018

Month 143

   Easter Sunday, April 1 I began month 143 of my journey. It’s hard to believe that almost 12 years has gone by since my diagnosis. Lately cancer has been an afterthought. Mandy and I rarely think about it at all. We go to work, We take care of our home, and we plan for the future. we talk of growing old together. Obviously, I will be much older than Amanda.
   For the last month we have been remodeling our home. Specifically, we have been remodeling Amanda‘s bathroom. Our home was built in 1979 and the bathroom fixtures are original equipment. I remodeled a home 20 years ago. It was a Huge undertaking at the time but I had energy to spare. I’m learning the difference 20 years can make. The good news is, I’m almost done. All that remains is to install doors, tile trim around the walls, and the tile tub surround. The bad news is, I’m out of gas. In addition to the bathroom we are pouring a concrete slab and putting up a metal building to park our camper and snowmobiles under. Every night after work I spend two hours on the projects. Amanda says I look exhausted and sick. The word Haggard comes to mind. That always makes me smile when I hear that word as I think of Merle Haggard.
   Our life reminds me of something that happened to me over 25 years ago. I was at church. During those years that is the place where I spent much of my time. For some unknown reason the pastor said during prayer, God wants to change your name. i’m not sure why he wanted to change my name. Maybe it is because my name rhymes with his.l, But at that time the only name that popped into my head was Job. “Job” Really!!!! I read the book. I know what happened to Job! 
   Funny thing is, it all happened. I lost everything. I even lost my health. 
   The book of Job is really about the promise of Job. Everything that Job lost was given back to him 7 times.
   I am happier today than I have ever been in my life. I have everything I have ever dreamed of. I wish I had a little more energy and testosterone would be great but Job is not such a bad thing.
   Well, y’all are probably thinking this is the dumbest thing You have ever read but I just felt like sharing my heart and this is my heart. 

Saturday, March 31, 2018

Please listen to my podcast interview with Cure Magazine


Zometa and The Dentist.

  Last week I went to O.H.S.U. Dental School to see about getting my teeth fixed. The condition of my teeth embarrasses me. If  I had known I was going to live so long I would have taken better care of my teeth. Actually, aside from one that cannot be repaired, most of my teeth are in pretty good shape. When I was 16 I had crowding issues. 4 of my molars had to be pulled. Braces followed. When I was in my 30’s I did not have dental insurance and a couple teeth had to be pulled. Last July while eating a milk dud, I lost a crown and it cannot be repaired. (Note to self: “Milk duds are bad for crowns” ) Huge bummer. I have to have an implant. $$$ Dental schools are 40% less to have work done. They also are covered by my insurance. I can have all the required work done for 1/2 the cost of what an implant would cost at my usual dentist.
    As a patient with advanced Prostate Cancer, any work requiring bone access is complicated. I am on Zometa to keep my bones strong. In order to get dental work done I have to be off of Zometa for 4 months before treatment and 4 months after treatment. I will be forced to forego Zometa for the rest of the year.
    Today I am at the Oncologist for my Tri-annual checkup, I am not seeing the oncologist. I will see the P.A. My Dr. Does not feel the need to see me as my condition is stable. Usually I receive Lupron, Zometa, and have my Labs drawn all in the same day but today will be infusion free. Thank God! I hate I.V.’s  My only concern is the dreaded PSA test. You would think that after 12 years I would be use to it by now but it always stresses me out. 

    Well, it is the day after my appointment. Everything was normal except my blood pressure is becoming an issue and as always my potassium level is borderline low. My blood pressure 150/100. I guess I will have to go back on medication to control it. My PSA came back less than 0.01. Once again I am at undetectable levels. Life is good.
   We are currently in the process of Home remodeling. We have been so for over a month. Soon our projects will be wrapping up and life can return to normal. Maybe then I will be able to write again. That’s all for now. Todd

Monday, February 12, 2018

My runway experience

   A just got back from a spur of the moment trip to New York. Johnson and Johnson partnered with the Prostate Cancer Foundation to sponsor the #BlueJacketFashionShow during New York Fashion Week and coinciding with World Cancer Awareness Day. I have almost recovered from the trip.
    The Blue Jacket Fashion Show brings together athletes, actors, business leaders, musicians, and this year me, to raise awareness and money for prostate cancer research. 
    I got up at 3:30 a.m. Tuesday morning in order to leave work early enough for my daughter and I too catch a 1:15 P.M. flight out of Portland. We arrived at Lagardia airport at 11:30 that evening. I don’t think we made it to bed until after two. My daughter was so excited to be in The Big Apple that she got very little sleep. As soon as we got into our room she ordered room service Mac and cheese. She looked like a princess. We woke early, showered and headed to a Taylor for last minute alterations to my Geoffrey Beene designer suit. 
   After the fitting appointment, my daughter and I, together with a friend from Share Network, were able to steal a few hours for a ferry ride to the Statue of Liberty and Ellis Island.
Our daughter has had a rough year and a half since graduating. Let’s face it. Adulting sucks. She wanted to go to New York so incredibly bad. It was a pleasure to take her with me. I don’t think she wanted to come home though.
   After our Statue trip and a warm up at Starbucks, we returned to the hotel via a 911 Memorial drive by and a detour through Chelsey Market for lunch and to buy Wine and Chocolate for Amanda. Mandy gave up her seat to allow our daughter to go.
    The fashion show was a blast. I felt a little out of my element as I was directed to go up the stairs with the rest of the models. “ Model” 
“You gotta be kidding me” Typically The only thing I wear is Camo and Levi’s!! My nerves began to build. It didn’t last. Once things got started it was just a whole lot of fun. I jokingly suggested that this years Blue Jacket Event must have a “Short Ugly Theme” Thank goodness I wasn’t the only short guy. I was the only ugly one though. That didn’t last either. Though they had little to work with they did their best to make me pretty.

 I think they did pretty good!

This was a wonderful event. I am honored to be a part of it and wish to publicly thank Johnson and Johnson as well as the share network for this incredible opportunity. I was the second person to be considered to walk the runway. The other gentleman, (A wonderful human being who is much taller and better looking than I ) was not well enough to travel. This leads me to the focus of this blog entry.

    When I was diagnosed there were very few treatments available for men in my shoes. We have come so far. Pharmaceutical company have brought many new and wonderful treatment to the world in the last 12 years. Men with advanced prostate cancer now have multiple options for taming the beast. Every day we edge closer to a cure. We are not there yet. My friend is living testimony that our work is not done. 30,000 Americans will die of Prostate Cancer this year. My friends are still dying. Each of these men is somebody’s father, grandfather, son, or husband. We can do better. We must do better. I am so grateful that the treatments I have been on or am currently on (Zytiga, Provenge, Lupron, Casodex) have worked so well for me. My life is a beautiful, wonderful, exciting ride. We cannot rest. We must keep pushing the research forward until no wife, child, or parent  has to say “ The man that I loved died of Prostate Cancer.” 
   If you are reading this, I urge you to make a donation to Ustoo, the ProstateCancerFoundation, or a similar charity that funds Prostate Cancer Research. Your donation may one day save the life of someone you love.

Saturday, January 27, 2018

Co-pay assistance

   It has been a long time since I have had something cool to share. I’m actually very excited about writing this post. A few years ago the insurance program I had through Kaiser Permanente radically changed. Prior to the change I enjoyed $20 office visits $20 prescriptions and $5 injections. Cancer medications were free.  The affordable care act changed everything. Don’t get me wrong I am not bashing on Obama care. Things needed to change and they did. Some of the changes were for the better some of them were not. In my case, I was forced from the cushy HMO health plan I had enjoyed into a high deductible 80/20 plan. For most people, it’s not a bad gig. If you don’t see the doctor very often  it lowers the cost of premiums and the health plans include free check ups and preventative care. For me, it was like finding out  there was no such thing as Santa Claus. 
   On my new insurance plan the cost of prescriptions is not all that bad once the deductible has been met but January eats a huge hole in my wallet. Our new plan offers a health savings account to ease the pain but it has been hard to put a lot of money into it as my take home pay must pay the price.  They say “Necessity is the mother of all invention.” Faced with high out of pocket costs I began to explore my options. 
   Pharmaceuticals are expensive. My insurance company is billed over $9,000 a month for Zytiga. I take 4 pills a day. That equates to $75 per pill. That is more money than I earn in a day. Drug companies have patients over a barrel when it comes to our medicine. In many cases we have to take the drugs or we die. It seems unfair but as my momma use to say, “nobody ever said life is fair.”
    The cost of bringing a drug to market is enormous. Research and development is partially funded through the
Congressional Directed Medical Research Program. Funds are allocated through the
Department of Defense. In reality however this money is just a drop in the bucket. Once a drug has been developed clinical trials begin. This is where the cost of bringing drugs to market skyrockets. Pharmaceutical companies must utilize investors to cover the cost. Most investors only invest for one reason. They want to make a lot of money. Investors have 10 years to capitalize on investments once a drug has received FDA approval. After 10 years generic copies can go to market. It can be a long 10 years for the consumer. Pharmaceutical companies realize this and many of them now offer co-pay assistance. 

So how does it work?

   Well.... let’s just say it is a little different for every drug but each one shares similarities. Some medications require a financial statement proving income falls below minimum thresholds. Some do not. As I am only privy to one example, I will share my experience in hope that it will help others find their path.
   It was actually my doctors’s medical assistant who was instrumental in securing co-pay assistance for me. I cannot overstate the value in creating a strong professional relationship with the medical assistant or the R.N. I have stated in previous posts that doctors are overwhelmed. Unfortunately, they have less and less time for the patient in many cases. It is the nurses who carry the bulk of patient care. Get to know your nurse. They are a valuable resource.
   The medical assistant went online to the Janssen website to see if they offered co-pay assistance. Once she found what they offered she checked to be certain I qualified. Once qualification verification was completed she signed me up. Janssen sent the co-pay assistance coupon directly to my pharmacy. 
   Now that the pharmacy has the coupon, they first bill the insurance company. After billing the insurance company, the  pharmacy sent the residual balance to Janssen. Janssen covered all but $10 dollars of the $1560 balance. My deductible for the calendar year has now been met with only $10 out of my pocket. My HSA account will now be enough to cover any out of pocket expenses for the remainder of the year. Now that my deductible has been met my Zytiga co-pay is a flat $60 dollars a month and Janssen still covers all but $10 dollars.

So how can they do it?
   Remember the college tuition act. The government guaranteed student loans so that anyone who wanted to pursue higher education could pay the tuition. It seemed like a great idea. In hindsight, perhaps not so much. Upon realizing the government was footing the bill, institutions for higher learning began jacking up the price of tuition. Sure, everybody can go to college if they want to but they will be saddled with student loan debt for decades to come.
    The same thing happened in the pharmaceutical industry. Everybody was required to have insurance so pharma jacked up the price of medication. They are making butt loads of money. They can afford it. I mean come on, does anybody believe that it costs $75 for one 250mg tablet. It was the same thing in the 80’s when all the auto glass companies advertised they would wave the deductible on windshield replacement. I was poor back then and carried $1000 deductible on comprehensive insurance. I had 2
Windshields replaced back then and didn’t pay a dime. That is also part of the reason insurance premiums are so high. That, and morons texting while they are driving.

    Use the system
    We have a healthcare system in place. Love it or hate it, it is what it is. The market will always dictate price. Pharma and biotech love the system. They don’t want it to change because they are making money. If patients can not afford their medication they will not have any customers and the price will drop. No more profits. Unhappy investors. You get the idea. It makes sense for them to offer co-pay assistance to patients. The down side of this however is that insurance premiums will continue to rise until there is balance within the system. One way or another we will pay. For now, take advantage of the system in place until for better or worse, something else comes along. I have shared this with some coworkers who also were elated to find copay assistance as well. Thank you for reading and always remember: 
The light the end of the tunnel is a train!