Tuesday, January 12, 2016

Rule #1 Get informed

   The Doctor just told you that your biopsy results came back positive. You have Prostate Cancer. Now you have to ask yourself, What does that mean?
  I was told by more than a few people after diagnosis that "at least I got the good cancer". The good cancer??? Wth.
   Okay, in some cases they might be right. Although I don't believe any cancer is "Good Cancer,"Looking back, I would much rather have this diagnosis than a diagnosis of lung cancer or colon cancer. 
   Prostate cancer is a different animal. It really seems as though no two cases are the same. For this reason there is a lot of controversy about treating the disease or if even the disease should be treated at all.  There are so many different facets that must be considered before choosing a treatment plan that getting informed is the first rule to follow when formulating any treatment plan.
  Like most men, I learned most of what I know on the fly. I really had no choice. If I were a woman diagnosed with breast cancer there would've been a clear roadmap regarding prognosis and treatment. This is because women in general tend to be more proactive and vocal about breast cancer. 
   In the 10 years since my diagnosis there have been many advances in the treatment of prostate cancer. The roadmap I followed on my journey might look quite different today. Changes in the American healthcare system present their own unique obstacles to navigate. These changes have made self-advocation all the more pertinent in cancer diagnosis and treatment. You cannot arm yourself with enough information. 
   Currently there is a general consensus that screening for prostate cancer should not be done. This adds more confusion to the mix. 
   In the small pond where I swim I am a big fish. Needless to say it is a small pond. Small or not I have met 3 men in the last couple weeks who were recently diagnosed stage 4 PCa. That really is the problem with not screening for prostate cancer. More men will be diagnosed late stage. In many ways I feel it is a step backwards. I do get it though, too many men over react to the word cancer and men who might never have to worry about their prostate cancer are having a prostates ripped out and putting up with terrible side effects that might never have been necessary.
   The bottom line is this. Educate yourself. Learn everything you can about treatments and side effects. Find the best surgeons find the best oncologist find the best urologists and formulate a plan. Science is turned prostate cancer into a chronic disease but there still men dying. 

Zytiga month29

   Today I begin month 29 since starting Zytiga or is it month number 30. I can't remember and honestly, I am too lazy to
try and find out. It has been a good long time though. According to my latest PSA I am still undetectable. 
   Today I learned of a former co-worker diagnosed stage 4 PCA. I do not as yet have any specific details regarding his Gleason score or his PSA at the time of diagnosis. All I really know is that he has bone metastasis. It is my understanding that he is not taking the diagnosis well. I understand where he's coming from right now and I hope that later he will reach out to me or to someone else who can help him navigate through treatment decisions. 
   I know I've said this before but I didn't do too well at the time of my diagnosis either. I had just started the journey through apprenticeship to become a journeyman pipefitter. At the time of diagnosis I really didn't think I would live long enough to become a journeyman. I didn't think I would live to see my 50th birthday. I didn't think I'd ever have grandchildren. In all honesty I spent a little bit of time feeling sorry for myself.
Mandy drug me out of the pit of despair. If not for her I might have stayed there.

   Zytiga has been an amazing drug so far. I am still on Lupron so I cannot give an accurate description of side effects.
I don't know if it is customary to continue Lupron with Zytiga but it seems to be working. The only 2 side effects I can talk about that seem to be enhanced over Lupron are severe bruising and diminished memory. Truth is, I can't remember a friggin thing. I have also lost a degree of sensation in my arms and hands. Other than the aforementioned I have not noticed any other side effects.
   The bruising is probably the worst. At any given time I will have at least one softball sized bruise on my body. We recently returned from a snowmobile trip in bend Oregon and I had a half dozen large bruises on my legs and torso. They are not painful. They don't really bother me. They are not real attractive. Any time I bump an elbow or knee or trip and fall I can count on seeing a bruise the next day.

   Memory problems are another issue. The funny thing is I don't know if it's a side effect of Zytiga or getting old. At times my mind is Lucid and then other times I forget everything. It can be frustrating. I have learned to clear my thoughts and allow it to come back. It usually takes only a minute or so. In my hind a picture a computer screen and a header that reads, "Todds brain not responding" 
   Lastly, I am losing sensation in my arms and hands. I drop stuff all the time. Is it a side effect of Zytiga or nerve problems resulting from a smaller bone mass? Either way it is a side effect of Prostate cancer. Losing bone mass concerns me. I was side hilling my sled in Bend and had a severe wipe out. I landed on my head and shoulder and felt everything crunch. I am afraid one day that will happen and I will no longer be able to
move my arms or legs.
   Overall life is good. Mandy and I are celebrating 10 years since meeting this year. I am thrilled that Zyriga has been working as well as it has. Janssen has a first rate product in Zytiga. I do believe that earlier Provenge usage is helping the Zytiga. 
   I am closing in on the 10 year mark since my diagnosis of stage 4 Prostate Cancer. Ten years. I really am blessed. It's funny. It doesn't seem that long ago. I guess I better not blink. I don't want to miss anything along the way.

A new year a renewed resolve.

   2015 is in the rear view mirror. May it rest in peace. I will miss it. It held much joy. It also had its fair share of heartache. I also lost my dad.
   Yesterday, I was able to open an email account that had been locked up for well over a year. Upon opening it, I found emails from friends that did not make it to  2016. Those emails had never been opened. I had never replied. I found lost opportunities to interview people for my blog. Again, no reply. I also found emails from people who had read my blog and had it touch their life. I never replied to those emails as well. 
   As I read the list of lost emails, replying to as many as time would allow, it occurred to me that during the year 2015 I basically checked out. I don't believe I posted to my blog more than a dozen times over the course of the last year. There are a ton of excuses. I started a new job, I was on strike, my dad passed away, but there's always an excuse. There is always a reason not to do something. The truth is that I had grown complacent. I ran out of things to write about that concerned me. I was comfortable living in false sense of undetectable P.S.A. security. I feel like a dick. I could have been writing about things that affect other people. I could have been just a tad bit less self absorbed. 
   I hope that this is a first step in the right direction. 2016 is here and each day is a blank piece of paper. Each day is filled with possibility.