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!

   

Tuesday, December 26, 2017

Another Christmas

  Night before last was Christmas Eve. The sand in the hour glass seems to fall so much faster than it use to. My dad has been gone for two years now. Sometimes I just want to grab on to the moments but they slip away into tomorrow. My first born granddaughter is a teenager. Life has become quiet. Peace surrounds our home. I am slowly heading towards old age. 
   Today we ventured up the mountain to see the fresh snow and embrace the beauty of our home. While we were up there our daughter snapped this picture. We live in such a beautiful place.

  

   Cancer brought so much positive change to my life. It is my greatest frenemy. Still, there is much work to do. Sometimes I don’t understand how I can have two daughters who adore me and two sons who will not speak to me. Christmas is bitter sweet. It is difficult seeing only half my family. 
   We were blessed with 2 inches of fresh snow Christmas Eve. It was so beautiful. White Christmas is very uncommon in the Pacific Northwest. I can’t remember ever waking to snow on Christmas Day. I’m sure it has happened but I don’t remember. 
   After gifts were open and breakfast was over, Mandy and I went snowshoeing. It is kind of our Christmas tradition. 





   Our daughter just called. She wants to adopt a dog. Decisions, decisions. Maybe it is a good thing. Our 15 year old black lab is losing control of his back legs and he has been a constant companion to our 10 year old German Shepherd since she was a puppy. It will break my heart to put him down but what else can I do. Time marches on

Thursday, November 30, 2017

It’s always there

   I had an oncology appointment today. It was my first since July. When I was seeing Oncology at Kaiser Permanente, my labs were drawn every month. Since changing insurance companies and moving to Providence Cancer Center in Portland Oregon that is no longer the case. The last time my labs were drawn was July19th. The stress of having a PSA draw every month used to bother me. I always thought it would be great to have the test less often. Now I’m not so sure. Having so much time between tests is great however it can be a double edge sword. On one hand, it’s nice not having to worry about having labs drawn and in some regards being able to forget about cancer for a while but on the other hand with so much time between lab tests, changes can occur on a larger scale. It can be nerve racking. Having lab tests monthly also brought peace of mind. Yes, I always had one day a month that was stressful but it was also monthly confirmation that I was doing well in the fight. 
   Time between visits open the door for the head games I am prone to play with myself. Every little pain or change causes me to wonder if the cancer is returning. Is the cough I have developed signaling the return of lung metastasis? “No dummy, it is the same cough every other person in the Northwest has!” Is the discomfort in the back of my legs caused by a tumor growing? “No, you hiked a mountain yesterday and don’t forget the hundreds of stairs you ascend at work each day!” It never ends! No matter how well I do in the fight there is always those negative voices whispering doubt. 
 



   Oddly enough, I don’t fear the return of cancer. I have many more bullets in the gun to combat this disease albeit many of the ones exhibiting mild to moderate side effects have been used. 
 


I have yet to be on Xtandi or any of the chemotherapies. It is simply a matter of wondering when I will be forced to take the next step. I have now been on Zytiga for 50 months. It is my understanding that I am among a handful of guys who have been on the medication this long. When the drug fails to work at some future date it may bring with it a new set of challenges. Zytiga works by shutting down the adrenal gland. In addition to adrenaline, the gland produces natural steroids and residual testosterone. A friend of mine failed Zytiga after 42 months. His adrenal gland never did start working again. It can be a messy transition.
  My check up went great. Lungs clear, no lymph enlargement, no leg swelling, and other than my red cell count and potassium level being at the low end of the scale, all my blood tests were field goals. Oh,..... My PSA test showed no change. It is still holding steady at less than 0.01. I guess my subconscious mind can rest for another 3 months. Now I can focus on the finer things that winter has to offer.



   To all my friends, family, and those who are kind enough to read my blog, go with God as you understand him to be and have a joyful holiday season. Todd

Wednesday, November 15, 2017

What's new in the life of Todd

Frankly, not much. 
    I get my first colonoscopy next Monday. " looking forward to that!"
     I went on my annual elk hunting trip last week. The elk won. I have never had a more miserable time. 2 years ago I took my son up to camp. He was 30 years old at the time. The group that I hunt with got 2 elk. There are about 8 of us that hunt. My son and I were not even there for the second one. I had to fly to Atlanta so he went home. He and I hunted only 5 of 12 days. When we divided the meat up, my son and I each got 5 packages of steak, a roast, and 9 packages of burger. Apparently that wasn't enough. Last year he hunted by himself. He got nothing. This year he hunted and camped by himself and once again he got skunked. I would have liked to have him stay and hunt with us but he didn't want to. He didn't want to split the meat. The trouble is that although he didn't hunt with us he hunted the various areas that we showed him. He hunted the areas we usually hunt. I learned a long time ago that if someone takes you to their favorite fishing hole or hunting spot, you don't go to those places unless you are with them. I confronted him on his lack of sportsmanship and respect,  ( I could have used better words ) I compared his deeds with a guest whom once invited into your home kicks your dog, drinks your best whiskey, and sleeps with your wife. It was a crude metafore but that's all it was. A simple comparison. It didn't go over well. He won't speak to me and said his "Step Dad " was the parent  who was there for him and not me. He is kind of correct in some ways but in my defense his step dad was full time and I was part time. Life is complicated in blended families. It does make sense though. His Step Dad is a jerk too!
   Yeah, I know..... this has nothing to do with cancer. Well, my blog is not about cancer, it is about Living and sometimes living sucks. 
   I was  a part time dad to 3 of my Kids. I have been a full time dad to my 19 year old Step-Daughter. "God I hate that word" I am only using it for clarification. If you Marry a woman who has children, you are a dad. 
Neither of my sons has anything to do with me. I asked my daughter if I was a bad dad. She said I am a wonderful dad. To clarify I am a wonderful dad now. I missed the mark quite often in my younger days. My 19 year old daughter said the same.
   Two days ago a kid from our small community killed himself. He was gay and had a dad that didn't understand.
   Are we ruining our young men?. Does every generation go through this?  
   I use to think my long term remission was a 2nd chance to make things right with my boys. The way things are going, I better live a long time. 
   I know I made mistakes when I was younger. Why do people always feel the need to revisit the past. Can't we just live for today. 
   I don't know what to do. I tried to apologize but I think he has blocked my number. He also unfriended me! WTH! Is that what it is all about now. Oh no.... I am Unfriended. Whatever.
I think my mood for today is bitter. 
   My daughter comes home from Texas in a couple days. It's going to be a good weekend.
   I hope my son gets over it. He is a smart kid. My other son may never pull his head out of his butt. I shouldn't say never though. After all, I am living proof of miracles.
   

Thursday, August 31, 2017

Packwood Lake

   I have been on vacation again. I had signal but lacked motivation. Vacation equates relaxation. Relax we did. Once again writing was not on the list of priorities. Sometimes it is difficult to find balance. Now that I am back and August is drawing to a close, maybe writing will be more consistent. Time will tell!
   We still have one more weekend left of guaranteed camping and boating. Labor Day Weekend is the unofficial end of summer. Temps are suppose to be in the mid-upper 90's. I wish the heat would go away. My webbed feet are cracking. We didn't have a place to camp over Labor Day until last weekend. There was a cancellation at Riffe Lake just a few minutes before we checked at the registration office. It was an ADA campsite! I told them I do not possess a placard  or ADA designation. They said they didn't care as they know I qualify. I kind of feel weird about it. "Hey, who has the disability in the campsite?" "The guy out there on the lake waterskiing!!"


   Most of you know that Mandy and I live in the Pacific Northwest and spend a great deal of our time in the wilderness enjoying all that our region has to offer. During the summer months most of our time is spent boating and skiing on the many lakes and rivers but occasionally we need a break. Last Thursday that is exactly what we did. 
   65 miles due east of interstate five lies the town of Packwood Washington. Five miles south of town is the trailhead to Packwood Lake. Packwood lake is in the heart of the Goat Rocks Wilderness area and only 7 miles west of the Pacific Crest Trail.
   Several thousand years ago the lake was formed when volcanic activity caused a mountain to slide into a valley damming the creek at the bottom. Mother Nature has done a phenomenal job. It is truly a beautiful place.


The Lake trail is a 9-1/2 mile out and back (4.7 miles each way) beginning at 2800 ft. and has a 600ft elevation rise throughout the first couple miles of the trail. It is rated easy to moderate and is a wonderful day hike. Camping is allowed along the lake shore for those who wish and the lake serves as a terrific stopping off place for those who will continue on to lost lakes or the P.C.T.








We had a really good day. The air was fresh and cool. I sure couldn't complain about the company. You may ask, "what does this have to do with Prostate Cancer?" 
Nothing!!! It has to do with living. Cancer sucks! It may shorten my life. It won't steal my joy. I cannot preach this enough.... "Don't stop living just because you think you might die. Live your life! Find the beautiful places and hang out there. Love with your whole heart. Be an amazing friend. Cancer is a gift. The guy who dies in a car wreck or drops dead from a heart attack never knows what hit him. He never gets the chance to do things differently if needed. The movie "The Bucket List" is a perfect example of what I am trying to say. 

 Somewhere some lucky guy is having a heart attack

It wasn't true in the movie. It is not true for you and I. Maybe there are guys out there who never did anything they regret or wish they could do over. I am not talking to you perfect people. Y'all are too cool for school. For the rest of us though, treasure the gift!

Tuesday, August 1, 2017

The wheels turn slow

   Two weeks ago I saw my Oncologist. At the appointment we discussed genetic testing and a referral was made to the Genetisist at Providence Cancer Center. I am still waiting to be contacted. Sometimes "the waiting is the hardest part" You gotta love Tom Petty! He is the coolest man in Rock and Roll.
   You may ask why Genetic testing? What does it matter? 
  Genetic testing is the future of cancer care. Testing the DNA of tumor cells can determine which therapies are likely to work for a given patient and will ultimately lead to targeted therapies tailored to the individual mechanism of cellular proliferation of cancer cells.
   The idea of being genetically tested came from a visit with Dr. Vogelzang late last year. During the visit he stated that I should be tested for the BRCA mutation. He is of the opinion that the aggressive nature of the cancer and the widespread lymph metastasis could stem from being BRCA positive.
   The idea of genetic testing has really taken off in recent years. The Genome project in breast cancer has yielded many advances in how breast cancer is treated. There is currently a Genome project underway for prostate cancer. I can only speculate that the same thing is happening throughout the broader cancer spectrum. 
  
As research continues to advance, I look forward to the day when patients will no longer be forced to endure side effects of treatments that will not work. Standard diagnosis will include gene mapping as well as imaging. Each patient will receive a detailed treatment plan tailored to the specific genetic make up of the cancer. Spock said it best.... "Facinating" 
   Once I see the geneticist, I will post more information. Right now I have nothing but speculation to share. 
    Thank You for reading
              Todd

P.S. For more information regarding the prostate cancer research (Genome) project, here is their Facebook page