Dear Mary and Dan,
Our paths have crossed over time, and I wanted to share some thoughts of encouragement and hope with you ...
From your post, I can tell you need a bit of encouragement --- we've all been there --- we're all walking on this road alongside each other --- none of us will ever turn our back on a brother or sister in need --- so here we are for you, right now.
First of all, you are pursuing expert consultations and second opinions. I've got an advanced case with some complexities --- diagnosed in my 40s, with a PSA over 100, and the sobering news that the prostate cancer had already found its way into both of my lungs. I had led a life of perfect health --- nothing prepares you for this !
Over time, I have put together a DREAM TEAM composed of my original urologist, a top-notch medical oncologist --- and then added the expertise of a UROLOGY ONCOLOGIST from Mayo Clinic --- urology oncologists are EXPERTS in the field of prostate cancer --- and for advanced cases, I recommend that you seek out the expertise of a urology oncologist --- they are in a different strata than urologists or medical oncologists --- there's an important distinction there --- and urology oncologists can be found at many larger medical facilities scattered across all the corners of this country. I would advise you to seek one out for your case, just as I have done for my case.
Case in point --- one of my fellow "Battle Brothers" hit the proverbial "brick wall" with his doctor, in terms of future treatments and a vision for the future --- he's got a complex case, just as I do --- he then sought out the expertise of a urology oncologist --- and came back home after a couple of days with an entirely new course of treatment possibilities --- which began immediately for him. Seek out the BEST medical expert you can find --- we ALL deserve the best, Mary and Dan !
From what you have described, chemotherapy treatments DO sound like a good "next step" for your case, and sounds like you've already started. I have also pursued an entire series of chemo treatments --- it is intimidating at first --- but then your confidence grows tremendously after your first treatment. Please use the search bar at the top of your screen and search for the thread entitled "Taxotere Side Effects" as MANY of us here contributed our first-hand, down-in-the-trenches experiences with chemotherapy treatments to help other brothers here navigate through a series of chemotherapy treatments. The thread was started by our member named Madeline Smith and is easy to locate, back in the archived threads.
Here's a powerful image I want to share with you --- you are pursuing the ADT hormone shots, just as I have been --- they "starve and strangle" the hormone sensitive cancer cells --- they do work wonders --- but then there are those stubborn, resistant cells that remain --- that's where the chemo treatments come into play --- they have additional cytotoxic properties --- I love that word "cytotoxic" --- powerful poisonous properties that target other cells that the ADT hormone cells can't touch.
I started on the ADT shots and watched my PSA go down --- then I jumped on the "early chemo plan" when it got approved and started chemo in the summer of 2014, just as my school year with a new group of elementary school students began --- over time, I watched that PSA climb down even lower --- so I have to remain an advocate for the idea of adding chemo treatments, when appropriate for that patient's particular case and with careful consultation with your medical team, to the other forms of treatments.
Truth be told --- adding chemo knocked my PSA down to low decimals --- sure, chemo treatments can be like walking down a gravel road in your bare feet on a summer's day, but MANY of us here have gone through chemo treatments and supported each other, every step of the way through it all.
Other good friends of mine now face my same diagnosis and have also decided to pursue chemo treatments, after careful consideration and heart-to-heart consultations with their doctors --- some of them have asked me for some inspiration, when getting started. I've said, "Well, my friend --- imagine a typical series of six chemo treatments as akin to the Winchester repeating rifle which was invented in the 1800s --- nicknamed 'The Gun That Won The West' --- get the image of the Winchester repeating rifle in your mind, if you will."
From there, I then describe the typical series of six chemotherapy treatments as 6 powerful "bullets" in the chamber of the Winchester rifle --- you are actually SHOOTING at your cancer, with a vengeance, with six treatment "bullets" in rapid succession --- "Bang, bang, BANG ! ... Bang, Bang, BANG !"
That might give you a visual image that gets you into fighting mode --- and a visual image to incite your fighting spirit !
From there --- there is NO substitute for the power and impact of family, friends, fellowship, and FAITH, in whatever form that takes in your life --- all of us here are fighting a mighty, daily battle --- it can take a physical and emotional toll that few would understand sometimes ...
With that thought in mind --- keep LIVING LIFE each day --- stay connected with neighbors, old friends, work colleagues, community members --- keep pursuing your hobbies --- exercise a bit each day, to chase away the blues --- get together with the fellows --- go on the fishing or hunting trip --- go to your Friday night poker club get-together --- attend your next high school class reunion --- pursue some volunteer work --- go on a weekend road trip --- go out to your favorite restaurant tonight --- call your old college buddies --- gather with the fellows at the local coffee shop --- start a garden, plant a tree, landscape your backyard --- work on that old car in the garage --- get season tickets to the hockey, football, baseball, or basketball games for your favorite team --- walk the dog through the park every single day --- build a bookcase, out in your workshop --- start a new project --- set a new goal --- join the local gym --- host a family reunion or family picnic this summer --- contribute to a charity of your choice --- do something that benefits your local library, church, or school ... whatever you do, get CONNECTED, stay CONNECTED !
A few weeks into my diagnosis, I faced the emotional struggles that all of us here have encountered --- but stubbornly, I kept living life each day, somehow. One day, one of my teaching colleagues came into my classroom after school and just simply stated, "I just have to say ... you have cancer ... but, my friend, you are finding a way to LIVE with cancer." I suddenly realized, for myself, that I WAS somehow finding my path ... and finding a way to live with cancer. It had become part of my life, but it was not defining my life ... that's the challenge we all face ... finding that balance ... learning to LIVE with cancer.
It doesn't take all of these thoughts or activities listed above to chase the blues away or give a person some hope or encouragement --- just one or two things, added to your life, can uplift you in tremendous ways. I've got some charity projects going with my elementary school students that I work on with them year-round that benefit children with cancer at Blank Children's Hospital --- and another project that has raised nearly $50,000 over the past few years for new elementary library books. You ought to see our school library now !
Some simple things in my life that keep me on track --- I walk every night --- I get together constantly with friends and family --- I put together summertime reunions for my old "college gang" --- I follow the sports seasons of my favorite teams --- I go to the gym --- I read new books ---I hit the road sometimes on weekends --- I go to social events whenever possible --- I work on writing projects --- and I keep close bonds of friendships with several prostate cancer "Battle Brothers" --- we keep each other grounded --- we help each other keep our "head in the game" --- and I'm thankful for them, every single day.
Most importantly to me --- a year ago, I celebrated my 25th year of elementary school teaching --- within those 25 years, I have just finished teaching three solid years since being diagnosed with advanced prostate cancer. My school kids mean the world to me --- they give me everything they've got every single day in my classroom, and they inspire ME to give them everything I've got.
My school kids have been a tremendous source of inspiration and support for me --- and with the support of my family, friends, teaching colleagues, community members, and my faith, I am already looking forward to teaching another classroom filled with kids --- I just got my new class list this week, in fact --- I'm finding my path, and my way of FACING FORWARD !
Right at the end of this school year, we filled our days with field trips, track meets, field days, school carnivals ... and 25 school kids hugged me like crazy on the last day of school ... I wouldn't have traded this past school year with all those kids for a million dollars --- I feel very BLESSED to be carried forward this far and to still be following my life's dream to teach school ... blessed beyond all words. I guess my message here ... keep pursuing YOUR dream ... keep following your passion ... keep living daily life to the FULLEST EXTENT ! I figure I've got one shot at all of this --- I'm going to give it everything I've got. I owe that to myself --- it's my life, and I've got to keep living it --- in the best way that I can !
I do EVERYTHING I can to face forward, and I do everything I can to encourage my friends who are "Battle Brothers" of mine --- again, never forget the importance of family, friends, fellowship, and faith. In my life, ironically, I now have five or six of my very best friends who now share my diagnosis --- from different chapters of my life --- hometown friends, one of my college roommates from college days, a minister friend of mine, a work colleague of mine --- fellows who have been my friends for decades and now we share in the same health diagnosis.
I have formed a bond of true brotherhood with each one of them, and we support each other in incredible ways. I also connect with other "Battle Brothers" here on this website, exchanging messages of support.
All of us involved in this diagnosis understand that there are setbacks, but then successes ... valleys, but then mountain peaks ... darkness, but then the proverbial dawn ...
As for me, I pay attention each evening to the sunsets --- each one is different, and that's when I reflect on the value of each day that I have been given since I was diagnosed --- since diagnosis, I have now watched 1,000 sunsets --- I can't wait to see this evening's sunset --- it's waiting for me --- I am waiting for it --- never forget the value of each day that we have all been given ...
Keep finding your path ... it's hard sometimes, we all know that ... but keep finding those scattered cobblestones, and keep laying those cobblestones down in front of you ... stone by stone ... one by one ... day by day ... and as you look back, you will eventually see that with each cobblestone ... you are building a PATHWAY for yourself ... it leads to YOUR future ... and each of us has to find our own pathway through this ... but, we ARE here together ... helping each other, as we all continue searching for those cobblestones ...
My story is simply one story ... we have hundreds of stories here ... collectively shared over time from our members ... I just simply hope that SOMETHING that I shared in my story will resonate with you, Mary and Dan, and lead you forward ... hope is a powerful thing, a bright beacon that shines through the darkest of nights and a beacon that leads ships through the stormiest seas ... hope, my friends, HOPE ! Don't ever lose sight of hope ...
Here's a final thought to leave with you, Mary and Dad ... in all of this ... my friends and fellow "Battle Brothers" and I have come up with a saying that we strive to attain when facing setbacks or tough times, emotionally or physically ... let me share it with you ...
We all acknowledge that cancer has come into ALL of our lives ... so, give it its full measure and let it be the title of a CHAPTER in your life's story ... but don't EVER let cancer become the title of your entire BOOK OF LIFE ...
Reflections of hope and encouragement and friendship, to send to you, from across the miles ...
Iowa State University ~ CYCLONE FAN
PSA At Diagnosis In Year 2013 : 138
Initial Diagnosis: Advanced Prostate Cancer, With Metastases In Both Lungs
Age At Diagnosis: 48 years
ADT Treatments: LUPRON, FIRMAGON, and currently ZOLADEX
Subsequent Treatments: Chemotherapy Treatments (TAXOTERE) & now ZYTIGA
Additional Medical Consultant: Dr. Eugene KWON - Mayo Clinic
Current PSA: Consistently < 0.50, With Treatments Ongoing
Post Edited (ISU-CycloneFan) : 6/9/2016 6:49:38 PM (GMT-6)