Thursday, May 29, 2014

Owning the battle

    I am sitting in the infusion room with an IV in my arm. I only have to do this every four months. I come here alone. Usually it is because Mandy is working. Today she had the day off and wanted to keep me company during my infusion. I told her that I didn't want her here. I don't know if she understood and to be honest I don't know if I understand why but today as I write I will be attempting to define my emotions surrounding the infusion room as it pertains to my wife
   I am just now beginning to understand the way this disease impacts the ones we love. We call them caregivers. Prior to cancer we may have called them are soulmate. I used to share everything with Mandy. This is an aspect of the disease that I refuse to share. In the infusion room cancer becomes real. In some ways I think maybe I am attempting to protect Mandy. Cancer takes it's toll on the ones we love. We don't have to share everything. Maybe I'm wrong but I do feel the need to shelter my bride. She worries enough. Even as I write this I just now had to give her a call. The nurse hung my IV bag but hadn't hooked it up. I have been sitting in this chair for an hour and 45 minutes. They just now started the drip I had to let her know that I was going to be late and not to worry. She was livid. She has worked in a clinic for 16 years said that she would never treat a patient that way. She said there is no excuse for that. This post istaeted off to be one thing but is now something entirely different. I'm sitting in the corner by myself. There is only one other patients in the infusion room. There is a head nurse and three medical assistants walking around bullshitting with each other as I sat in this chair for an hour and a half without anything being done. An infusion that should've taken an hour will now take a minimum of three. My employer pays Kaiser Permanente $20,000 year for my health insurance. $20,000 a year to be set in a corner and ignored. No one talks to me. No one checks on me. I will sit here by myself until the alarm goes off. I am completely pissed off at the moment. I worked a 12 hour graveyard shift last night. I got four hours sleep. I had Amanda wake me at noon in order for me to be at my appointment on time. I'm tired and I'm grouchy. The company I work for is in the middle of bargaining a new contract with the union that represents us. It is the company's intent to no longer offer Kaiser Permanente as a health insurance option. At this point I really hope they get what they want. I'm getting really sick and tired of the take a number and wait in line health care mentality. I'm getting really sick and tired of the lack of personal care. Sometimes I feel the patients of Kaiser Permanente are treated no better than cattle herded through the Feed lot. My butt hurts and I want to go home. I am so thankful that I only have to go through this procedure once every four months. The bag is almost empty soon they will just be able to flush the line was saline. With any kind of luck I will be out of here in another hour. The sun is shining.  I want to be on the lake or hiking in the woods. I want to be anywhere but here. 
    I am very thankful that Amanda's not here right now. And in saying that this blog post has come full circle. We can shelter those we love from this disease. Not all of it of course but definitely from some of the day to day things that serve to remind them that we have a terminal disease. Thank all of you for reading and God bless. Todd

Wednesday, May 28, 2014

Taking the summer off I think

Hi everyone,
   One of the biggest challenges in dealing with this disease for me is maintaining my sanity. Every month I get new blood work and it always includes the usual P.S.A. test. Aside from the monthly anxiety about this test I do really well. Usually the anxiety comes a few days before the test and climaxes as I log on to check the results. There have been times when my hands tremble as I enter my password. It would be no different on Thursday May 29 except I have decided to take the summer off from cancer. I will still have to go in every month for blood work but Thursday I will not be having my P.S.A. tested. I will not spend restless nights waiting on test results. I will not live my life 30 days at a time this year. I am in remission. I will stay in remission all summer long!!! 
Cancer is powerless. It cannot steal my joy. It cannot break my spirit. It cannot cause me to lose faith. It cannot take away the love in my heart. It cannot kill my love of laughter. It will not take my life. It will not steal my courage. 
   Mandy my daughters and I will depart on an eastern Caribbean cruise on Saturday, June 21. I have never been able to take any of my children on a vacation like this. It is my hope that this will be the first of many vacations. I hope that in the near future I will be able to take my sons as well. When we fly to Miami on the 20th I will be leaving cancer behind. I won't think about it. I won't worry about it. I will spend time under the warm Caribbean sun with my family living life out loud.
   When a person has cancer it becomes an all encompassing part of life. For eight years now cancer has been the underlying focal point in everything we do.  Our life revolves around doctor visits blood tests and treatments. Mandy is tired of it and I'm tired of it as well. I will still write my blog and I will still post at I will go to my monthly appointments but that is all. It is 2 am. 5 more hours and I get to go home. Good night everyone. Todd

Saturday, May 17, 2014

Stand your ground

    Knowledge is power. That is the first rule I learned in my war on prostate cancer. Nobody, not your doctor, not the insurance companies, not the pharmaceutical companies, will put your interests first in this fight. I was fortunate to learn this lesson early on. I was educated by those who had come before me. One man in particular, Zufus, is a master at thinking outside the box. His ideology in treatment selection might not be right for everyone but they work for him. I was fortunate in my battle. The first line of defense in stage four prostate cancer, A.D.T. , continued to be effective for five full years. I spent the bulk of this time arming myself with information. I spent many hours at the computer researching current available treatments as well as clinical trials. It was a very frustrating time in my life. Many of the available treatments were not effective for long periods of time. There was however, hope on the horizon. A new biotech company, Dendreon, was conducting A phase 3 clinical trial on a revolutionary medication that harnessed a person's own immune system to combat prostate cancer. Sipuleucel-t or Provenge, was the first treatment of it's kind. It was a true cancer vaccine. Although Provenge was not a cure, it was hope to those who had very little hope at all. I knew early on that when hormone therapy eventually failed the next treatment I would pursue would be Provenge.
   Counting a one year vacation from treatment, hormone therapy lasted a full five years. Midway through year number six it became obvious that hormones were no longer doing the job. I was facing a rapidly rising P.S.A. and I was beginning to feel sick again. It was during an oncology visit that my doctor concurred a change in treatment was necessary. He offered five or six different treatment options for me to weigh in on. The last one he mentioned was Provenge.
   When Provenge first received approval by the F.D.A. I was elated. My elation soon turned to discouragement when the product label stated that lung metastasis was excluded. I would not be able to receive Provenge. However, by the time I needed Provenge the exclusion had been lifted by the C.M.S.
    I didn't need to think about it. I had five years to think about it. I believed in my heart that for a treatment plan to have any kind of long term success it would have to begin with Provenge. Blood tests, CT scans, and bone scans, were ordered to see if I was a good candidate for the treatment. It came back as a mixed review. In her own words, my case manager stated that I was "the perfect candidate for Provenge" My doctor saw things differently. The CT scan had revealed a small lesion in my right lung. Citing the product label excluding lung metastasis he would not prescribe me the medication. Mandy and I were devastated. In our hearts and minds Provenge was hope. We appealed and won the first battle based on the C.M.S. Decision to drop the exclusion for lung metastasis. It was however, to be a short lived victory. There was at this time, an editorial written by a stock analyst, in  the journal of the National Cancer Institute circulating throughout the medical community. The article, authored by the world renowned scientist "Marie Hubor" accused Dendreon of comparing the medication to a faulty placebo. It didn't matter that the author of the article was not qualified to write the document. It didn't matter that her hypothesis had been debunked as bad science. My doctor cited this article to deny me the medication. I will never forget the words he said over the phone that day. "Mr. Seals there is new scientific evidence that proves beyond a shadow of a doubt that this treatment will not work for you because you are too young. It may in fact make your situation worse" 
   My PSA was doubling every six weeks. Mandy and I were scared. How much worse could it get? 
   We would not be deterred. Provenge was the right choice.  Provenge  was the only choice. We made the decision to set the course and to not be moved from it. We began the appeals process while simultaneously searching for another way to receive the medication. We found a doctor in Las Vegas Nevada who would prescribe me the medication. We contacted the patient assistance program through Dendreon in order to receive the medication as soon as possible once we had exhausted the appeals process. We made an appointment to see the doctor in Nevada in early April 2012. Two days prior to leaving for Nevada we received a call from my case manager at kaiser Permanente. The Washington state insurance commissioner had ruled in our favor. In his decision he stated that Kaiser Permanente had made the decision not to prescribe on nothing more than speculation. I was to receive the medication at the earliest possible date.
We kept our appointment with the doctor in Nevada. He has been invaluable in our fight against this disease. 
   A lot of people have already heard this story and perhaps to some it is old news. It is my belief that everybody needs to hear the story. I could've rolled over like an abused dog and urinated all over myself. I could've been a good submissive little patient and done precisely what my doctor said but my doctor was wrong. My doctor was wrong when he told me I only had a year to live. My doctor was wrong when he told me that hormone therapy would only last a couple years. My doctor was wrong when he told me that Provenge  would not work for me. The fact is Provenge is still working for me. 
   There are some places where I cannot speak my mind. This is my blog and by the very facet of the possessive is not one of those places. Provenge is expensive. Provenge therapy $97,000. Lucopherysis and infusions $35,000 ballpark, office visits scans and blood work to qualify, $10,000 In my humble opinion this was the real reason kaiser denied Provenge to me........ Fourteen side effect free, progression free months..... Priceless!!!.
    14 months after receiving Provenge it was time to find another treatment. Perhaps it was unnecessary. PSA is not a good indicator as to whether or not Provenge is working. Nevertheless my PSA was rising and it was difficult for me to sit back and watch it rise. I began Zytiga 10 months ago. My PSA has fallen from 29 to an undetectable level. I am in remission. Nobody knows how long this remission will last. We hope it will be for a long time. It gives me great comfort to know that there are new cutting edge medications on the horizon. It gives me peace knowing that my own immune system has been empowered and is still hard at work beating the crap out of cancer.
   The title of this post is Stand Your Ground. It really is an appropriate title.
We as cancer patients must look out for our own best interests. Nobody else will do it for us. Bringing cancer medication to market is expensive. This makes cancer medications very expensive. I hope I never lived to see the day where the cost of the medication will outweigh the value placed on the human life. We are advocates. We are the frontline. We are band of brothers fighting a war that is inclusive of all aspects of this disease. Stand your ground. Make sure that your doctors are doing what is best for you. Our friends, our wives and families, our grandchildren, they all need us. Stand your ground because in the words of a very good friend, "We Will beat this crap!!" Todd

Tuesday, May 13, 2014

Graveyard shift

3:39 a.m. Tuesday, May 13. I have had very little to do this evening and time is moving at a snails pace. I am the lone pipe fitter in my area and I have nobody to talk to. I have entertained myself playing spider solitaire and Minesweeper. I have perused websites dedicated to those who monitor black helicopters. I must say it was quite entertaining. The odd thing about conspiracy theorists is that what they're saying makes sense for a little while then they just go way too far and you see that they're absolutely insane. I spent a little bit of time checking in on my friends at healing I ate three maple bars. In two more hours I will be able to call Mandy to give her a wake up call. In 3 1/2 hours I will be halfway home. I can't wait to jump into a nice hot shower and then get some much-needed sleep. Ordinarily on a tour shift rotation I will work two12 hour day shifts followed by two 12 hour night shifts followed by four days off. This week I have to come in on one of my days off for a machine overhaul. When I left the house last evening I glanced at my retirement clock. The timer is already down to 236 days. It's amazing to me how quickly time passes. I hate this place. There was a time not long ago when it felt good to come to work. This company used to be owned by a local family. Back then it wasn't real profitable but you knew that the owners cared about the employees. It doesn't feel that way anymore. Now days we are expected to do more for less. it's a contract year. Four years ago during contract negotiations we lost our pension. Contract negotiations began two weeks ago and the company has already presented us with a long list of takeaways. One of those takeaways may very well adversely affect my retirement plans. Currently if an employee receives a disability retirement, the employee will receive 75% of the life insurance policy the company has on the employee as a retirement benefit. It's not a lot of money in the grand scheme of things but to a person who will no longer be receiving a paycheck it can make a substantial difference in post employment finances.    in my case it literally will be the deciding factor whether or not I can retire in January. The company wants to take this benefit away from us. There are a lot of other takeaways on their two page list but this is the one that will impact my future the most. Eight years ago when this company was bought out things begin to change. In many ways I'm grateful for the change. The business was losing money. There was no job security and really no hope for the future. From the onset of acquisition by the new owners changes began. The workforce was cut from 1200 hourly employees to 700. At the time of acquisition there were 12 paper machines at this facility. Now there are only five. The new owners promised us that yes, changes would be made jobs would be lost, but for those who were left,  they would be rewarded. The new owners set production and profitability goals. They asked a lot of us and we did everything that they asked. We exceeded profitability and production goals and did it a year earlier then their projected timeline. Perhaps I am na├»ve but I was actually cautiously optimistic about the upcoming contract negotiations this year. I really felt like we were going to be rewarded for our hard work. After several meetings between the bargaining board and the company I now feel like I have been slapped in the face. We have done every thing that they asked of us and more. We have worked long hard hours every day every week for the last four years. We have brought this company from the verge of closure to being one of the most profitable mills in the country. I suppose we should be happy that the new owners didn't pack up the whole mill and ship it to China. Personally, the way I feel right now, I wish they would have. 
I'm tired. I know I'm whining but I think I'm just a little frustrated. I also have a real understanding about the way things work. I know that a lot of the items on this list is simply posturing. After all, if the union is going to come in asking for improvements in wages and benefits, then the company has no choice but to present the union a list of takeaways. The problem is ithat some of these takeaways will certainly come to fruition when the contract is ratified. The union is tasked with providing the best contract for the majority of the membership. Until the contract is ratified my future is left uncertain. Had I known that the life insurance benefit would be on the chopping block I would have initiated disability retirement months ago. Now it may very well be too late. I've crunched the numbers and if I lose the disability benefit it will mean that I have to stay here for two more years. For most people two years really isn't that long. To a person with stage four cancer two years could be a lifetime. I don't want to retire because I'm too sick to work. I want to be able to retire and enjoy a few years of not working. When I was diagnosed I never thought I'd see 50. I actually never thought I'd live long enough to receive my journeyman rating as a pipefitter. I sure as heck didn't believe I'd live long enough to retire. Right now retirement for me is a reality. I may actually get to spend a few years not working and enjoying all the benefits that retirement has to offer. I really hope so. Todd 

Tuesday, May 6, 2014

Facing Reality

    Yesterday I woke at 10:30 am in preparation for the 12 hour graveyard shift I was forced to work last night. After coffee, Mandy and I spent as much time as possible biking and hiking before I had to go to work. I got home at 7:30 this morning. Mandy was already long gone by the time I arrived. She started a new job today. She began looking for new employment a couple of months ago. At the time, I was elated. The job at the clinic where she was working provided no future. She received no benefits and no vacation and no retirement whatsoever. I was thrilled when the new employer called and offered her a lead position. Finally she was going to be getting the recognition she deserves. Each day this week she has to drive over 70 miles to the hospital in Olympia for orientation and training. Mandy hates being in the car. Once she completes her training this week her commute will be cut in half. I hope she loves her new job.
  A couple of days ago, I found out why she really made the decision to switch employers. There were of course the aforementioned reasons but a conversation we had a couple months ago really set the ball into motion.
    It was a dark rainy afternoon and I was having one of my not so positive days. I said something to the effect of " there are not too many drugs left for me to take in my fight against cancer". Amanda asked what I meant and I said "the next step for me would most likely be taxotere or some othe form of chemo-therapy."
  I always try to be a few steps ahead of the game. When I was on A.D.T. alone, I knew the names of the next 2 or 3 drugs I would turn to when the hormones failed. I have now exhausted all but the last of those drugs. Keeping with my system, I had planned the next 2 or 3 drugs I would take once Zytiga fails. On this particular day, I had just found out that the next drug I was planning on taking after Zytiga might share a cross resistance and be useless in the battle. The other two drugs on my list are still in trial and may or may not be available when Zytiga fails.
  I was discouraged. One of the bullets had been taken out of my gun.I have since gotten over it and thanks to many friends, I have a full magazine and an extra clip but the damage was done. In a moment of weakness I blurted out something that might not come to fruition and yet, the proverbial cat was out of the bag.  I am going to die from Prostate cancer and it could be sooner rather than later.
  It's a truth that I cannot ignore no matter how often I choose to stick my head in the sand or cruise the Egyptian river. Telling Mandy that chemo might be the next treatment for me got her attention. She needed a better job because if something happens to me she would be in a world of hurt. It's funny how people that need life insurance cannot get it. I have done what I can but the truth remains that my death will provide Mandy a significant financial  hardship to overcome. It is comforting to know that upon my death she will receive my pension for the rest of her life, but it is only a few hundred dollars a month for the surviving spouse.
   I am not trying to be morbid. I have not lost hope. I have not given up. I am simply facing reality.
I have a terminal illness. Many of my friends who have fought this disease have already lost. Many were diagnosed several years after me and had better stats. I have been blessed a whole lot more than I deserve. I am grateful. I hope the blessings continue. Perhaps they will but what if they don't. I don't have a will. I don't have anything that says if nothing can be done that I want them to pull the plug. I do not have my house in order. Mandy deserves better.
  Mandy started her new job today. She left her old job that afforded her a lot of time away from work to attend our daughters sports functions because the reality of our situation demands that she do so. I still believe I will live to see my granddaughters have children of their own but I can't count on that to pay the rent. As much as I wish I did, I do not have the faith of a mustard seed.  
  I was forced onto a rotating shift schedule that is suppose to last only a month. It could end up being permanent. This only cements my decision to retire the first of the year. I need to end my complacent behavior. I need to get things taken care of. I need to look reality in the eye. My family depends on me to take care of them. Todd

Friday, May 2, 2014

May 2, 2014

    I haven't written in over a month. I have started a couple different drafts but I never put more than a few words on the screen. I have been far too frustrated with the day to day irritations of my life to relax and put pen to paper figuratively. On the cancer front I am doing fantastic. My Psa test two days ago showed that I am completely undetectable. The actual number was <0.05. I have been playing the game for 96 months and I am undetectable. As I sit here, 8 years from diagnosis, it is hard to remember what life was like before cancer. I can't recall what it was like to feel passion. I know how I feel and how I think about things, but I forgot what it feels like to feel masculine. I can make all kinds of jokes about my feminine side, chick flicks, and shoe shopping but they are masks to hide the pain I feel each day.  I am not complaining. Far from it! This is a simple acknowledgement of truth. Prostate cancer is a thief. It has stolen my manhood. It has stolen a good part of what it means to be a husband from my wife. It has stolen my energy. It has tried to steal my zest for life. This last month it has come close.

   It is not just the cancer that has been beating down my spirit as of late. I, and the rest of my co-workers have been treated like dogs at work. The long hours and switching from day shift to graveyard every few days is wearing me down. I need a vacation. I need to get away to the coast of someplace beautiful and drink brightly colored umbrella drinks. I am so damned tired all the time. I take a benedryl at 9pm and I wake to the alarm 8 and 1/2 hours later. It is 7:15 and my eyes are heavy. I am fighting off a cold. My throat is scratchy and my chest is tight. I have been eating vitamin C like crazy. My color is flushed. I look and feel like a cancer patient.

The Sun came out Tuesday and we took the boat out on the lake. It was just what I needed. I want summer to be here today.
    I talked to one of my many friends at Dendreon yesterday. He said he wants me to head south in early June. I hope it happens. It would do me a world of good to see my friends again.
   I am fine. I will be fine. Some times it is just hard. Sometimes I need to be vulnerable. This is one of those times. Todd