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



Thursday, July 27, 2017

Thank all of you


Getting older

   My doctor said I had a year to live. That was 11+ years ago. What do you do when you hear those words? You start thinking about all the things you won't get to see or do and in my case you spend your retirement savings. 
Doh!!! 


   I have been throwing money at retirement trying to get caught up. It isn't easy but it is a necessity. It appears I am going to live long enough to retire. I have also lived long enough to experience some of the challenges of aging. Getting old sucks but it does beat the alternative. 
   Tuesday last I developed a rash on my left shoulder blade. I knew what it was immediately. For the two days prior I had chills and mild flu-like symptoms. I have Shingles. ( darn those chicken pox ) On the Monday before, during a routine cleaning, I found out that I am losing gum thickness. I also need a couple of dental implants.
   Every time the weather changes, a few days prior, my left big toe aches to high hell due to arthritis in the joint. I use to think old codgers who claimed stuff like that were senile! I understand now why so many people move to Arizona when they retire! My hearing is not what it use to be (too much rock n roll ), I don't pick up a book (or even a package of taco seasoning for that matter ) without first donning my reading glasses, and when I walk into a room, half the time I cannot remember why. Maybe those old codgers are senile!
   There were many many things I thought about when I was diagnosed. It saddened me that I would never get to celebrate a 50th birthday. December 2, I will be 54. I had just started an apprenticeship a few months before my diagnosis. I was sad that I would not become a journeyman. I have been a journeyman pipefitter for 7-1/2 years and actually completed another apprenticeship in lubrication. I thought about all the places I would never get to see or do. Over the last decade, we have seen and done many of them. 
   I never considered what aging was going to be like. Quite frankly, I didn't think it would happen! Although I am not at an age that most would consider old, I am in no way a spring chicken anymore. I guess I am more of a mid-late summer chicken. Now that maturity (physical that is ) is beginning to set in I believe I will have more things happening to my body to laugh about! 

   


The point of all this is that nobody knows the date and time or the when and where of our demise. Common wisdom says I should have been ashes long ago but here I am. Even if you have been diagnosed with a terminal illness it doesn't mean that the doctors are correct. Human wisdom can be wrong. Live for today, plan for the tomorrow, and above all, take care of your body. It is the only one you have.


Wednesday, July 19, 2017

Month 135

Good morning,
   I know, I haven't written much lately. Quite frankly there's just not a lot to write about. It used to be I would see my oncologist once a month. Seemed I was always having blood work drawn and test results to post. Lately that has not been the case. I last saw my oncologist in January. Until yesterday I had not had a PSA test drawn since that time.
    So far, it has been a pretty incredible summer. We have put almost 40 hours on the new boat. Considering that we are only midway through summer, that is a pretty significant amount of time. Last week we were on vacation. We loaded the camper onto the truck, hooked up the boat, and chased the sun to Prineville reservoir in Central Oregon. Once again, it was just Mandy and I as our daughter is now a full-time student at college and a part-time employee at the local burger joint. 
    We reserved our campsite nine months ago to get the very best campsite available. It was worth it. This was the view from the door of our camper!
 
This photo was taken the first morning of our vacation. We awoke to 75° temperatures at eight in the morning and a lake as smooth as a sheet of glass. It was perfect!
   We spent our days on the water, our evenings gazing at stars, and our nights holding each other close. Thank God for air conditioning. At times it was hard to keep my upcoming Oncology appointment off my mind. I was a little stressed out.
 
 


 
   We got home Saturday last and my anxiety continued to build around my upcoming appointment on Monday the 17th. I was really nervous regarding what changes had taken place. Had my PSA risen? Was the cancer growing? Would I require a change in treatment? So many questions.
    On Monday as the Nurse inserted the I.V.  line into my arm, I was filled with a sense of peace. I knew that no matter what the results were, it would be okay
Yesterday I received my test results. Here is a screen shot of the results of my PSA

 
. As it turns out I had no reason to be worried. After 135 months since my stage IV Prostate cancer Diagnosis, that include 10 years on lupron, 3 years on Casodex, 6 months on D.E.S., Provenge Therapy, and 4 years and counting on Zytiga, my P.S.A. is still holding steady at less than 0.01. Needless to say I am very happy. 
   Many thanks to God, Janssen, Dendreon, Kaiser Permanente,  my many friends and followers, and Providence Cancer Center. 

Wednesday, June 28, 2017

My take on Healthcare

   I am a product of the 60's. The year I was born (1963) was considered the last for the baby boomer generation.It is also considered the first for Genx. I was a teen during the 70's and came of age during the Reagan Era. I remember the labor disputes of the 70's as my dad, ( A Card Carrying Union Welder) went on strike in 1976 and again in 1978. '78 was rough. The strike lasted 6 months. The local went back to work after 6 months for basically the same offer they refused and walked out on. I remember when Reagan fired the air traffic controllers. In my mind, that day ended the power of unions to bargain a contract from a position of strength. Unions have been in decline ever since. Benefits my father and grandfather fought for are all but gone. When I was a kid, it would cost my parents $5 for us kids to see a doctor. We had $1500 a year in dental care. Flash forward 40 years and we have $2000.
   Growing up I was taught to fear the communists. The Russians, North Koreans, and Red Chinese among others were evil empires hell bent on world domination.   I assumed, wrongfully, that socialism and communism were the same thing. As it turns out, Greed and world domination are not a product of any particular political system. 
   I work at the same mill my dad worked at albeit with a different name. I started in '99. Ironically that is the year my dad retired. The year I hired on the company paid 100% of our health insurance premiums. That is no longer the case. Over the course of the last 18 years, we have paid more and more with each labor contract negotiated while our benifits have slowly eroded. Like all others, Obama-care took its toll on our health insurance. When Barack said if you like your insurance you can keep it he lied. Faced with penalties for Cadillac health insurance (penalties that never manifest) my employer stripped us of our HMO co-pay ($25 Dr. visits, $20.00 prescriptions, $5 injections, and free cancer medication) and replaced it with a high deductible 20/80 plan. No offense Mr. President but you missed the mark. My new health insurance doesn't SUCK but it is not what I had.

   We have adjusted. The one constant in life is "things change"! There are a ton of good things in Obama-care that I love. Obviously, the pre-existing condition clause is a favorite and having our daughter on our health plan until she is 26 is awesome. I love that preventative care is free. There are a few other things we like but most of it does not affect us. 
For at least a decade prior to the ACA being signed into law, I witnessed rising medical costs, rising insurance premiums, and an ever shrinking middle class wage. I use to get really angry when I went to the emergency room with my identification and insurance card and the room was filled with people who had no health insurance and in many instances had no intention of paying the bill. A close friend of my wife had 3 children. One of those children was a very bright wonderful little boy who happened to have special needs. My wife's friend was single and worked part time. She received food stamps, had to pay only $100 dollars a month rent. She received subsidized transportation in the form of a car, as well as subsidized utilities and cell phone. Meanwhile, my wife and I both were forced to work full time in order to make ends meet. Somehow it does not seem fair but it is the way it has always been.
   This week, the Senate is voting on various ways to repeal Obamacare (ACA) What a load of crap. They say that the ACA is failing and is basically a train wreck. It is a lie. Remember, these are the same people who call Social Security and Medicare, as entitlement programs. This confuses me! (Insert sarcasm) 
Do they not realize that for the last 40 years I have had 7-1/2% of my paycheck deducted for social security tax! 

Everything that every politician says is bullshit. Dem-Hypocrats want to give everything to the poor for free and the Repukes want to give everything away to corporations. Either way, the people who work for a living lose. We end up paying for everything. The American dream is no longer for hard working Americans who work hard, it for those who are better at taking than everyone else. Just my opinion.
   
   
   
    

Monday, June 26, 2017

Snake oil and the traveling medicine show

     
   Did you ever see the episode of Little House on the Prairie where the snake oil salesman came to town pedaling a tonic the cures everything? That used to be one of my favorite episodes. I couldn't believe people could be misled so easily!
   Cancer is a serious disease and it matters not which form rears its ugly head. Medical science is making huge advances in the treatment of cancer. I also believe that there are supplements out there that effectively aid in the fight against cancer. Still, it amazes me, that the traveling medicine show is still alive and well today. I read a book one time about A woman who had supposedly cured all types of cancer. She cited case studies of a number of patients she had claimed to have cured. The irony is that none of the patients that had been cured were ever diagnosed with cancer by an actual medical doctor. She diagnosed the disease and cured it. There were a couple of cases where the patient had actually been diagnosed cancer by a medical doctor prior to seeking out this woman and her alternative medicine but they left the study. I wonder why? Another book I once read claimed that eating 3 almonds a day could prevent cancer and often cure it. I would laugh but it's not funny. People believe this crap and die because of it. Another alternative theory claims that a vegan diet and coffee enemas will cure cancer. It seems people will believe anything!
    Little House on the Prairie was depicted in the mid-1800s and yet here we are today almost 200 years later and people are still playing the same old con game. Recently my blog has been inundated with so called testimonies of people who have sought out alternative medicine and have been miraculously cured of cancer, Hepititis C, HIV, and other serious health issues. I love it when people leave comments but these people (robots) are really starting to piss me off. This blog was created to share my story and provide hope to those who find it. It is not for con artists to prey on people who are at a vulnerable point in their life It does no good to ask them to leave. They don't care about people. They care only about profit.
    For those of you who find this blog please note that comments from others citing miracle cures are not endorsed by me.

Saturday, June 24, 2017

Sick in the pit

   My last PSA was midway through January. The last time I saw my doctor was mid-March.
I feel good I think.
  Yesterday I bought two tickets to the Matchbox 20, Counting Crows, concert. The concert is on July 19th. I just realized that is two days after my Oncology appointment and I have had a sick feeling in my stomach ever since. Why? I don't know. Maybe because it will be 6 months since my blood work has been done. Maybe because it has never been so long between PSA tests. Maybe because I am approaching 4 years on Zytiga. I am worried. I use to wish I could go longer without PSA tests. What I realize now however is that each good test result fed my confidence that the next blood test would also be good. It was also easier to rationalize that evennof it did go, there was no way it could go up very much.
     I have waited over 12 years to see matchbox 20. They are one of my favorite bands. Rob Thomas is a terrific writer. I guess you can say it a bucket list item. When the band broke up I thought it would never happen.
 

   The longest anyone has been on Zytiga is 8 years. There are a bunch of guys who have been on it for 6 years. My understanding is that the average time on the drug is 1 year.  A good friend of mine was on it for 44 months and recently went to Xtandi. It has not been a smooth transition!  Will we be celebrating at the concert or wondering about the future? It all depends on my labs.
   I still feel really good but unfortunately, that doesn't mean much. These disease exhibits very few symptoms until it is widespread. 
I have been tired. I usually wake up before the alarm. Lately I wake up to the alarm and often hit snooze. Amanda is doing the same though and I am certain she does not have prostate cancer. I am 53. I work hard and on top of that we are painting the house, prepping for new carpet, and trying to get our winter firewood supply cut and put away.
   Lately my teeth have been failing. Mostly it is from crowns failing that I have had for many years but there are 2 in particular that have very little original tooth left and may need to be extracted and implants installed in their stead. I have been on Zometa for 4 years. Implants will have to wait a minimum of 3 more months. Today as I sit in this chair awaiting the dentist I am on the verge of tears. Quite frankly, this sucks!
   My tooth can't be saved. I need two implants and a 3 tooth bridge. Does anybody have 5K I can have.