Second Helpings.

Chef Dave Del Rio

 There is this local restaurant, "Eaton’s Beach Sandbar & Grille". It is located on the banks of Lake Weir. If you want the best pastrami, or the best shrimp and grits, or anything in between, this is the place to go. But you better call ahead, because there is a wait on the weekends. It really is that good. Great food, relaxing casual atmosphere, and you were always guaranteed a table visit by Dave - executive chef and owner. Eaton's Beach has won most of the local culinary awards for the past few years, often besting the finest of down town five star dining establishments. This year was no exception. Last month was "Taste of Ocala", a black tie fund raiser event where all the local top restaurants compete for awards. The monies go towards the college scholarship fund. The jazz band that I play in was hired to provide the night's entertainment. Once again, Chef Dave Del Rio took top honors. From the stage, I could see him - in his trademark hat, proudly walk up and accept his awards on behalf of his staff. Two weeks later, Chef Dave died at the age of 62 from a sudden heart attack. Just like that. One second he is at the top of his game. The next, gone.
 http://www.ocala.com/news/20170324/friends-staff-and-diners-remember-chef-dave-del-rio
No second chances. No do-overs. No extended play. No refills. His time on earth just abruptly ended.

So my last blog entry left off with me about to have my first post treatment PSA test. Well, that is over with, and the final results are in. But first a little side bar. Fun fact - I am deathly afraid of needles. To this point in my life, I barely have a 50% success rate at not passing out on a blood draw. Seriously. My biggest fear surrounding my prostate surgery was the I-V line. When I had to get two simultaneous hormone shots in the stomach, there was almost a complete throw down in the doctor's office. To this point, I have managed most of my PSA tests by closing my eyes, looking away, and gritting my teeth hard enough to make my ears ring, until the nurse physically takes my other hand and places it on the cotton ball - my signal that it is over. I am not exaggerating. It really is that bad. This time, about a week before my blood draw, I decided that I was going to watch the whole thing - come hell or high water, I was going to do this. I decided that I would prepare for this feat by watching you-tubes of blood draws and phlebotomist training videos. That actually worked. I was able to watch the whole thing, and stand up and walk out. I don't know why that became so important to me, but it did. And I am oddly but shamelessly proud of myself for that little personal success.

Yea, I know I have tattoos. but that is different. Much different. To me, anyway.

So, on to my results. After an excruciatingly long week of waiting, my PSA came back as undetectable (<0.02). Finally. I can exhale a little. I met with my doc, and after acknowledging the good news, we discussed a game plan and options going forward, should my cancer resurface. He is going to send tissue samples saved from my surgery for a new test called a decipher test - that uses genome sequencing to determine types and probabilities of recurrence. He also mentioned the possibility of clinical trials that are focused on my particular rare form of prostate cancer. All of this was a little bit of a buzz kill, but I also appreciate his proactive approach. Anyway, my next PSA is in September. Meanwhile, I get a reprieve. A chance to go back for second helpings, if you will.

There has been a lot of water under the bridge since I was initially diagnosed, and there are a lot of things that I still don't understand. A lot that doesn't make sense, and probably never will. I have no idea what caused the cancer to start with. Even within the community of men fighting this cancer, there seems to be so much unexplained randomness in how we each respond to the different modes of treatment. And how those treatments take a toll on us by way of side effects. The thought of chemotherapy petrifies me beyond words (see my above take on needles and I-Vs). Yet there are brothers in this fight that have weathered chemo only to have lupron knock them for a loop in much the same way it did me. That blows my mind. Some come through surgery without any loss of continence, yet for others, it is a battle of months or years. Radiation is a minimal issue for a lot of us, but for some, it causes major issues. There seems to be no rhyme or reason. Why some of us get to take a reprieve, and others do not. There are so many that I have met on this journey - brothers that I have fought along beside, and leaned on for untold emotional support. Some have already responded well and moved on. Others are fighting their asses off every day, hoping for their break, while congratulating me on mine. Yet there are some, as I write this, are in the final stages of their battle, having come to terms with the imminent conclusion of their decades long fight. I am indebted to them all for the life lessons that I have and continue to learn from them. Not to mention their unwavering friendship, support, and love.

Then there is Chef Dave Del Rio. He never had a chance. Not a single day to get things right. To say what he meant to say the day before. Neither did Gardner Spencer - my neighbor that got me back on the bike after my surgery, back in the beginning of this Journey. We went for a ride the day I found out that surgery did not work, and that I would need follow up salvage treatments. He was killed four days later when a truck veered into the bike lane and hit him. No previous diagnosis of any kind for either, yet their deaths seem to somehow bracket this phase of my journey. Both stark reminders that a cancer diagnosis is just that. A diagnosis, and not necessarily death sentence. At least not at the onset. Someone on the online support group I follow said "Cancer is not a death sentence, it is a life sentence". I like that. I guess that it is up to us how we choose to live out that sentence. Many people never get that option.

There is a lot that I can not begin to understand, but one thing I do know is that this opportunity I now have - whether it lasts 5 months or 5 years - is a genuine gift and blessing. It marks the beginning of a different phase of my journey. Instead of actively treating cancer, I get the opportunity to regain my strength, and once again try and experience life without directly looking through the "lens of cancer"(I believe Mark Bradford, one of my brothers in this journey, originally used that phrase to very aptly describe life with cancer). There is no doubt in my mind that I need to take utmost advantage of this gift.

    It is also, I think, an appropriate time to bring this particular blog to a close. Not because I think I am done with cancer (or writing, for that matter). I am many years away - if ever - from being able to consider that. I also know that despite my best attempts otherwise, the nagging thoughts of "when?" will never leave. I also know that I am forever changed and can not go back to before. Nor do I want to. But I do need to frame the next part of my journey in its own perspective, and not waste any of it worrying about all the possible "what if " scenarios. I can't do anything to change how long my cancer will or will not remain dormant, but I can make damn sure that my plate is clean when the time comes. No regrets. No should haves. No excuses.

   I would like to thank everyone for reading along. If you want, you can find the blog in it's entirety here: http://gettingtoquetico.blogspot.com/ Feel free to read and share as you see fit. I look forward to creating a follow up blog in the future. A blog about Living. Not about cancer.  In the mean time, I see that there is a big ole plate of life left in the kitchen, and it is still warm on the oven. I think I will go grab my self of a second helping or two. And maybe some mashed potatoes as well. I love me some mashed potatoes and gravy.

The End.

About Dental Hygene. Brush & Floss Daily.

So, Just what in the world is tooth care doing in the middle of a blog about prostate cancer? Don't fret, I will be "filling" you in on that shortly. (See what I did there?)
       Well, It's getting that time again. I am about two weeks out of my next PSA test. Time to renew my three month lease, and see what changes were made to the contract.  I find myself doing the same thing that I have done on all the previous times, almost like some sort of bizarre ritual. I pull up all of my pathology reports and read them once again, because maybe - just maybe- I missed something all the countless times before that I read them. When I am done with that, I turn to google, and run different variations of the basic searches that I have always done. "prostate + cancer + ductal", or "ductal + adenocarcinoma". Sometimes I add the word metastasis just for some added fun. Then I re-arrange the order of the search words and repeat. But regardless, the same old hits appear that always have. So I read them all again. One always hits close to home. it involves a case study of a gentleman that required a urinary diversion surgery (ileal conduit) when his PC spread into his bladder. My father had to have that surgery when his cancer hit his bladder. He passed soon after. That was 2008.
      Once I have exhausted all of that, satisfied that there are in fact no new nuggets of information, I start playing the what-if scenarios through my mind. What if it goes in my favor - or - what if it doesn't? I wish that I had the mental fortitude to not put myself though this again, having done it so many times before. But this test is different. Then again, aren't they all? There is the first test after surgery - or the first since starting hormones - or the first after finishing radiation - or the first after the radiation has done all it's going to do. Maybe one day, they will be routine. I sure hope so. Not this one. This one is most definitely different. I have been off all treatments since December. I took my last 4 month lupron shot in August. I am actually starting to feel a hint of normalcy. I am not tired all of the time. The brain fog has lifted, and my stamina is returning. I am starting to enjoy things again, instead of just going through the motions.  I sure hope that I don't have to go back. My wife and I are going on our first cruise in June. Then I am going to hike the Camino De Santiago with my daughter in 2018. I want to be able to truly enjoy those experiences without the mental and physical veil of hormones. It all hinges on this test. Yea, this one is different. For sure.
      So back to my teeth. Yesterday was my six month appointment with my dental hygienist and check up with my dentist. You know the deal with getting your teeth cleaned. About a half an hour of probing, the ultrasonic water needle that winds up hurting my ear from the pitch more than my gum line, all the while staring at a light of sun like intensity. Meanwhile, the suction device is stuck, leech-like, to the inside of my cheek, and Barry Manilow is crooning in the background through the scratchy overhead speaker.
      With the scene properly set,  I can tell you the the cleaning went pretty smoothly. I have been pretty consistent with my daily brushing and flossing, so there was no need for Beverly, my hygienist, to turn the cavitron up to eleven. In fact, a couple of times, I began to doze off in the chair while she was working. (It's a trick I learned in the Navy many years ago - never miss an opportunity to take a nap). She finished up a couple of minutes early, so we chatted a bit while waiting on the doctor. It gave me an opportunity to respond to some of the things she asked me about while I had a mouthful of dental instruments and fingers.
     Enter, the dentist! (insert theatrical soundtrack here). Actually, my dentist is pretty cool. As a result of my RP surgery, I had to have an emergency root canal attempt that eventually became an extraction. As it turns out, some people bite down really hard while under general anesthesia. I am apparently one of those, and I guess the mouth wedge became dislodged during surgery and I clamped down really hard on the intubation tube and cracked a tooth. (that explains why my jaw seemed so sore after surgery). About a week or so before I was due to start radiation, it abscessed. She took lead on making sure that the endodonics group took care of me prior to radiation treatments. She even called me at home on a Sunday afternoon to make sure all went as planned and wished me luck on my treatments. I really appreciated that.
     Anyway, back to the present. she began doing a through oral evaluation - which including messing with my neck (I hate that), while I open and close my mouth. Then she began a visual inspection of my gums for general health and any sign of oral cancer. That is when a "thing" caught her attention. On my gums behind my back top tooth, she saw what she described as a "small brown flat freckle". She finished the rest of her evaluation and then went back to it. "It is probably nothing, but let's get the camera in there, take a picture of it and keep an eye on it on your next visit, just to make sure it is nothing more." Well, shit. As a practical matter, it is probably indeed nothing, and most people wouldn't give it a second thought. But I am not most people. I am a guy that has spent the past couple of years fighting a particularly aggressive form of prostate cancer. So yea, my mind went there immediately. In a New York minute. As did Dr. Google, as soon as I got back to the office.
     The Doctor finished up and left, as I kept studying the picture of my gum freckle - now displayed on the computer screen. Beverly saw my concern, and tried to reassure me. "Don't worry about that thing!. To me, it looks like you bruised it eating some sort of crunchy food or nuts. " OK. fine. I'm sure that's all it is. Nothing more. Right? Right.
      As she started scheduling my next appointment for September, she told me that it wouldn't be her. She will be retiring in July. What? She has been my hygienist since around 2000. Now, there are many things much more pleasant than getting your teeth cleaned, But it was nice to have a consistently friendly and professional person there that really seemed to care. Someone who took the extra time to get to know her patients.
     Thank you, Beverly, for all of your efforts. Enjoy your retirement. I am not looking forward to getting accustomed to a new hygienist, but change is inevitable, I guess.
     Walking back to my office, I couldn't help but notice how beautiful the day was. It had been cold that morning (In Florida terms). About 28F. It was now noon, and had warmed up to the 50s with a nice breeze that felt invigorating. Perfect clear blue sky. The birds were very active, perhaps due to the weather. I decided to take the long way back, so that I could take it all in. All in all, I feel good. Once again, I feel reminded to appreciate every day for what it is, and the people around you for who they are. Because change will happen. It is inevitable. Meanwhile, it is great to just be alive.

Tales From The Other Side

Spot, my fun loving prostate & drinking buddy

It has been three months since I officially stopped taking Lupron. My last 4-month injection was on August 9, 2016. I was due one more in December, but made the decision to forego it and see if I could hold a zero on my own. It is a catch 22. Although my PSA has remained zero since June, there was no way of telling whether it is from being cancer free, or just the Lupron suppressing it. When both my Oncologist and Urologist confirmed that whether or not I took one more shot would have no effect on my ultimate outcome, it seemed pointless to blindly subject myself  to another four months of this crap. I wanted to find out where I stand. The worst case is that I go back on it if need be, but I had to know.
I just had to know.
That was December 12th, based on a blood work from December 5th.

My next data point would be my annual physical - Due in January. I requested that a PSA and Testosterone test be included with my blood work. The results of that test (Jan 3rd) revealed that my PSA was still undetectable, and that my testosterone had already recovered to 143. Still way below normal (>250), but a lot further away from chemical castration levels (<50) than I thought it would be for only being one month out. Hell yea, I am going to rid my body of this poison in short order and get back to normal.
Or not.
That blood work also revealed something else. My cholesterol levels were through the roof. 384. As it turns out, one of the value added bonuses of hormone therapy for me. I have always had to watch my cholesterol, but could always manage it with diet and exercise. Not any more. I am not taking statins to manage that. Cheeseburger, anyone?
   So, how does it feel to be off of Lupron? As much as I would like to say that is just amazingly awesome, it really is not. It is more of a mixed bag, for sure. I can say that the hot flashes are all but gone. That is a good thing. I have more energy some days. Things are starting to wake up "downstairs". Hell, I even had what might pass as "morning wood" on a couple of occasions. All good stuff. Probably the most noticeable difference is my body's response to exercise. During strength training, I am actually starting to feel that pump again. The muscles are actually responding, as opposed to just getting tired. That feels good.
The brain fog is lifting, and I can focus better. A bit more mental clarity. it is a good thing, but it is also allowing me to finally see just how much of a toll this journey has taken. Just how much it has impacted my life, and the lives of those closest to me. make no mistake that every aspect -both  personal and professional - has taken a huge hit. Some days, I feel like a stranger in my own life - if that makes any sense.
When I was in the Navy many years ago, I was single, but the married men would mention how hard it was to return home an extended deployment and try to re-fit in within their own home. To get back into a normal routine. Their wives/families had, out of necessity, continued to go on with their lives with their spouses out of the picture for the better part of a year. Playing catch-up seemed to be a hard thing. Some did not succeed. Nobody's fault really..life goes on with or without us. I think I get that to some extent now. I guess that I can take comfort in the fact that should this thing go south for me, others can manage. In the meanwhile, I got work to do.
  Most anyone that has gone onto hormone therapy will recall the mood swings that occurred - mostly in the beginning for me. Well guess what? my experience is that they come back as the Lupron wears off and testosterone re-enters your body. But they are different going this direction. The first time, most of my swings were towards sad. Crying moments. This time, they were more tinged with anger and darkness. They seem to have subsided, but a few were doosies. I don't want any more of those. That is for sure. If you think about it, it sort of makes sense that mood swings would happen with the re-introduction of testosterone. It's like puberty all over again. But without the Farrah Fawcett poster.
  And there is all the physical stuff. "The Wall" still exists, in all it's glory. The other night I was grilling steaks for dinner. Out of no where, I was exhausted. I finished them, put them on the counter, and went to bed. It wasn't even 9pm yet. I slept through until 7 the next morning. Stamina is still a big issue. I get tired way too easily for being 52 years old. I think my joints are feeling better, but my weight is still going up for no reason..not to mention the unnatural distribution. Perhaps I am expecting too much too soon. They said it would take some time to wear off. I guess I thought I could prove "them" wrong.
All in all,  it feels good to be off of it, even if it is such a mixed bag. I have no idea how long it will last, but I plan to make the most of it as long as I can.
Back in December, on separate appointments, I asked  my oncologist and urologist the same question. "What are the chances of me not needing more drug therapy?" Neither one was able to maintain eye contact. All I got was "let's see how it goes", & "take it one step at a time" as they purposefully studied at their note files.
Next PSA test is in a month, so we will see. Such is "life on a 3 month lease".
But I had to know.
However it goes, I just had to know.
#thewolfwillsurvive

Three Years Under the Belly of a Whale

 I originally wrote the following sometime in 2012. It chronicles the afternoon that I received the worst phone call of my life. 
"Guess What? I got a 100 on my algebra test!!" The text message from my daughter came across my phone about a quarter before 4pm. My first insight to how her day went. Awesome news! Math is not her strong subject, and she had studied hard the night before. Students are not supposed to use their cell phones on the school bus, but she usually sneaks me a text or two on the way home. I can expect a call about ten minutes past four, after she is dropped off and walking home. Today is Sept. 23, 2008 - Ashley is about a month into her freshman year - still excited about starting her high school years.
Just a minute or so before 4, and my phone rings again - but this time it is a call, and not a text. I pick up my phone, getting ready to give her hell for calling from the bus, but when I press the send button, all I hear is heavily distorted screaming. Ash - What's wrong? Nothing but distorted screaming. (Cell phone audio cannot deal well with much more than normal voice). Ashley!, Calm down so that I can understand you. Still nothing but distorted screaming. Ashley - Take a breath - you are going to have to calm down - I can't understand you. I need you to calm down and tell me what is wrong. The bus was in an accident. It is on fire! Are you off the bus now? Yes, but Margay is still on. It’s burning. I don't see her. I couldn't breathe. Are you hurt? I don't think so - I tried to get her up, but she wouldn't move. The smoke got really thick and I couldn't breathe. It's exploding! I heard the explosions over the phone. (I asserted it was the buss tires bursting from the heat of the fire. I had seen this many times as a fireman.) Where are you at now? In the Road next to the bus. I still don't see her. Is the fire department there yet? No. I need you to get on the side of the road. Whatever you do, do not get back on the bus! Where are you? On the highway. A big truck hit us. Everything is on fire. Are you away from the bus? Yes. I am on my way - where are you? On the highway, next to the ball field. Wrigley Field? Yes. Okay, I am headed there, but it will be a while before I can get to you. When the Fire Department gets there, they will keep all of you together okay? Okay. I will get there as soon as I can. I love you. Can I let some of the other kids use my phone? Yes. I still cannot find Margay. I need to go and start heading that way. I love you!
I then called Michelle. I knew she would be on her way home from Marion Charter. Michelle, where are you at? Coming into Sparr on Old Jacksonville Road. You need to cut over on 316 and head towards the ball field. Ashley's bus was hit by a semi and is on fire. Oh God, I can see the smoke from here. Is she hurt? She called me. She is off the bus. She said that she couldn't get Margay up and thinks that she is still on the bus. She had to get out because she could not breathe. Oh shit! You need to call Elissa. OK.
Hello? Elissa - This is Pete. Ashley just called me. The bus has been involved in an accident right by the ball field. It's probably just some minor fender bender...Elissa, A semi hit the bus and it is on fire. You need to go now! Click.
I need to get out of here. Shit, my car is on the other side of campus. It is the beginning of the fall semester here at UF, so parking is absurd. I parked out by the center for performing arts and rode my bike in. Gone. Wait - I need to shut down my bench. Need to let Larry know. FUCK! OK, just stop, Pete. G.I.S.T. (Get Your Shit Together. - An acronym from the fire service.) She seems ok. Scared as hell, but ok. Michelle is probably there by now. Larry, I have got to go. There has been a major accident with Ashley's bus. She seems ok, but it is not good. I begin to shut my equipment down. Don't worry about that stuff. Just go. We will get it. Thanks.I grabbed my bike and headed out the back.
I was able to get to my car in short order. Now to rack my bike and get off of campus before traffic congestion took hold. Making it off campus was pretty easy. I seemed to beat the rush. Finally - Got the green light at Williston Road. No more traffic lights until 318 at Orange Lake.  Now my mind starts to wonder. Is she hurt? What am I going to see? Surely Margay did actually make it off..Ash just couldn't see her in all of the commotion. But what if she didn't make it off? This isn't good at all. Crap. I am not even to Micanopy yet. What the hell!!??How can I not be to Micanopy yet? I need to get on it. Now this fucker in front of me is going to turn into Beckwith's gun shop. I don't have time for this. I attempt to change lanes and almost cut a motorcycle off that was in my blind spot. Where the hell did he come from? I've seen him before on the daily commute. I get the death glare as he passes me. Doesn't he know that I am trying to get to my daughter for shit's sake? How could he know? I attempt some gesture to acknowledge that I fucked up. All I can do at this point.
Coming in to McIntosh, I start thinking of how I am going to actually get there. 301 will be backed up to hell. I should probably pick up Jacksonville road and come up 316 to the ball field. That's the plan. It works as planned until I get close to the ball field. It is set up as the command center. As I go to turn in the parking lot, some deputy stops and says that I could proceed only if my child was on the bus. "What is the bus number and name of the driver?"he asks, I presume as some sort of test to see if I belong there. Without uttering a sound, I just look up and stare at him. It is amazing how much information can be conveyed when you choose not to speak. "Go ahead, you can park over there".

The scene is total chaos. As I make my way across the park - using the column of smoke & steam as my guide, all I can see is a sea of emergency vehicles in both directions. Fire trucks, ambulances, sheriff cruisers, FHP, DOT, you name it. The outer fringes quickly filling up with media trucks - several helicopters hover above. A call to Michelle confirms that she is in fact down there at the bus, with Elissa, frantically looking for Margay. She had seen Ashley, but could not get to her, as they had all the children in a restricted area on the other side of the highway. I knew that this would be the case..they needed to maintain the accountability of all the kids in all of this mayhem - not to mention keeping the over-zealous media away from them. I know they won’t let me down there to the heart of the scene..so I need to find a back way in..down past the pavilions..yes, all I got to do is jump this hedge row and fence, and I am there..going in. Sir, you need to get back up to the pavilion. What the!? There he is. Barney one-bullet. All of 5'5 and at least 250. Look - My daughter and wife are down there. I know how to handle myself on a scene. You can't go down there. Look, Pillsbury..Pete! I turn around. It's Jeff. I didn't know he was a deputy. I hadn't seen him since high school. Jeff, I am trying to get down there, and your cadet here needs to get the hell out of the way. My daughter was on the bus, and my wife is down there as well. Man, I can't let you down there. Come on man.Come on back to the pavilion. They will be bringing the kids around in a little bit anyway. This really sucks. I know he is right. I have been in his position way too many times. Just never on the other side.
As I get back to the pavilion, I see the school superintendent arrive. As he walks towards me, I can feel the apprehension pouring out of him. The weight of the world is on his shoulders today. I cannot imagine what is going through his mind right now. Understand, I am in no way a fan of him as a superintendent, but today he has a job nobody wants. We make eye contact, and I say, without a doubt, the most asinine thing I have ever said in my entire life. "Well, you’re damn sure going to earn your paycheck today". To this day, I have no earthly idea why those words came out of my mouth. It was my honest intention to merely acknowledge that I was aware of the insurmountable stress that was on him at the time. As I said, I don't particularly like the man, but he sure as hell didn't deserve that. If I get the opportunity in the future, I definitely owe him an apology.
http://www.ocala.com/news/20080923/girl-13-killed-in-school-bus-crash-on-us-301

I had intended on continuing to write in detail about the ensuing aftermath of this fatal day, but up until now, I could not bring myself to do so. This was without a doubt the hardest thing that I have ever had to deal with in my life. The day my daughter's school bus was involved in a fiery crash that took the life of her friend. The crash occurred in September of 2008 - the beginning of her freshman year in high school. Four months after losing my dad after a protracted battle with prostate and bladder cancer. A tragedy that would mostly consume her for the next three years - despite everything that her mother and I did to try and prevent it from doing so. We wound up taking her to the hospital to be checked out, and made it home that night to the sound of helicopters overhead and news vans combing the neighborhood. There was a media feeding frenzy for several days afterwards.  The accident happened on a Tuesday. She stayed home that Wednesday. Thursday, we took her to school to her books replaced that were destroyed in the fire.On Friday, she decided to go back to school. We offered to drive her, but she wanted to ride the school bus - just to prove to herself that she could. This would be our first clue as to how she was going to attempt to deal with it on her level.
In the following days, we would become more aware of what happened. The bus was making a scheduled stop on highway US-301 to let children off. A semi-tractor trailer hit the bus from behind at full speed, causing both the semi and the bus to immediately burst into flames. Ashley and Margay were sitting in the third seat from the back. Margay was entrapped in the wreckage and was unconscious. Ashley had attempted to get her up, but could not and was forced to leave due to smoke and fire.  The driver of the semi was presumably asleep at the wheel, due to driving for over 36 hours, under coercion from his employer. He would eventually be convicted in court and sentenced to three years in prison for involuntary vehicular manslaughter. That was May of 2010. We attended that hearing, and Ashley asked to speak with him after the sentencing. With the help of our attorney, she was allowed to speak to the driver as he was being handcuffed to be taken away. She said that she knew that it was an accident, and that she forgave him. She wasn't mad anymore. I will never forget that.
http://www.ocala.com/news/20100520/truck-driver-sentenced-to-three-years-in-fatal-school-bus-crash
Summer of 2011. Her senior year is on the horizon. By this time, Ashley had already been through several months of physical therapy for injuries, as well as counseling for clinically diagnosed PTSD. She had pretty much built a shell around herself, abstaining from most activities high school girls tend to do. She tended to spend a lot of time in her room, quietly. She had a good game face and half smile, but it was a manufactured one. Her mother & I knew that. She was often lauded for handling things in such an adult manner. That bothered me immensely, because she was supposed to be a kid - not an adult. She was supposed to be doing kid things and enjoying her high school years. That was the thing. Despite all our efforts, we never got back the girl we sent to school that day. We got her home - yes. Something that we are eternally grateful for, but she was forever changed. I resented that. A lot.
We had one more step in a process that had now consumed the majority of her high school years. An arbitration meeting with the owners of the trucking company. Let me back up for a moment. It was obvious from about day three after the accident that it was in our best interest to get an attorney. Within days of the accident, we had already been inundated with calls from the insurers of the trucking company. They were also sending investigators to question family and friends. It was clear that this was going to be far messier than we could hope to deal with on our own. Fortunately, we had very good council. A friend of mine in our local mountain bike club was an attorney, and he agreed to represent Ashley. From day one, the singular focus was to do what was in Ashley's best interest. To get her the help she needed for her to be able to move past this.  Going into this meeting, our primary goal was to be able to put this thing to bed once and for all. It was important that she be able to enjoy her senior year of high school without the cloud of the accident hanging over her head, as it had for the previous three years. I will not get into the details of the arbitration, but I will mention two of the outcomes. Ashley had a one on one meeting with the CEO of one of the largest trucking companies in the US. It was a closed door meeting that lasted over 45 minutes between her and the CEO. The only other person that was in the room was a female staff member of our attorney's office - as an observer only. To this day, I have never queried Ashley about that meeting. All I know is that the lady observing said that Ashley held the CEO's feet to the fire the entire time. The other thing that I will mention is that there was a significant donation made to St. Jude's Children's hospital. These were both things that Ashley wanted to see happen. She wanted something good to come of it. Later that summer, we would travel to Memphis for her to personally deliver that check. Of everything that happened that day, the thing that I remember most is watching her walk out of the building. Michelle and I were already at the car. It had been an unbelievably long and stressful day. We turned around to see two women walking toward us. One was the staff member of our attorney, the other..holy shit, that was Ashley! I had never seen her walk that tall, that confident, or with such purpose. She had gone into that day as a teenage girl, and walked out as a young woman that had begun to discover her own voice. I was completely blown away. For the past three years we had done our best to get her past this thing. To prevent it from becoming a defining moment of her life. Finally, we were beginning to crawl out from under the belly of that whale. It had been a long journey. We lost contact with Margay's family. As heartbroken as we all were about her death, Michelle and I had to do what we thought best for Ashley. I cannot for a minute imagine losing a child like that, but we had to focus on the task of getting Ashley passed the traumatic experience so that she lead her own life in her own way. I hope that one day, they will all understand that.
I remember a few weeks after that meeting, we were at home grilling out. I also had a campfire going. Ashley came out of her room with a tall stack of newspaper clippings and other assorted papers. Unknown to us, she had kept every paper article about the accident, as well as any other information concerning it. She asked if she could put the pile in the fire. She said that she did not want them anymore. I remember crying when she went back inside. How much she had held in though it all. How she persevered. How, when all was said and done, we followed her lead to dealing with this in her own way. How, with the help of an amazing team of fine people that I am proud to call my friends to this day, we were able to forge a scenario that allowed for her to actively participate in every aspect of the process and feel empowered.  But she was beginning to smile again. For real this time. And music began coming from her room.
She did in fact have a great senior year. She made good grades, and was accepted to Flagler College in St Augustine, FL. (Her first choice). It was a year to celebrate. Of course, it also meant that she would soon be leaving for college, and her room would once again go silent. But this time, it would be OK.
So, why now? Why write about it after all these years, and why on my cancer blog? To be quite honest, even now, it is a lot harder to write about it than I thought it would be. There are many ugly details that I have purposefully chosen to leave out. They need to stay in the past, and really are not relevant to the purpose of this post.
Well, I am writing now for two reasons.
First, it defines the perspective of how I approach my cancer. Yes, cancer is hard, it is scary as hell, and it can be overwhelming at times. Even so, for me, it doesn't come close to the day that I got that phone call. Not to mention ensuing three years of trying to make Ashley's pain and hurt go away. Not by a long shot. Each day, I can choose how I am going to approach cancer, or occasionally choose to not think of it at all. My prerogative. That is a much better position to be in than the often helpless feeling I had with regard to the accident. No matter how bad my day, I've been through and seen worse. Much worse. I'll make it through this.
Second, I think that I am finally at a place emotionally that I can put it all in a framework, so to speak. A week ago, Ashley left for the United Kingdom. She will be there for two years doing her graduate studies. As proud as I am of what she is doing, It was very hard to see her go. I did my best to hold it together at the airport when we dropped her off, but it was an emotional moment to start with, compounded by the side effects of my treatments. It was hard. Very hard. The simple fact was that by the time we see her again, she will be a completely different person. The young woman that we put on that plane will never return. She will be forever changed. Not that it is a bad thing. It is just a fact. Just like when we dropped her off at Flagler College four years before, and in some ways, like that fateful day in 2008 on that school bus. We all have events throughout our lives that change our course, direction, and perception of the world. Often, we chose those events - such as college, careers, etc.  Sometimes the events choose us - such as tragic accidents or medical diagnosis. Either way, they are bound to have a profound effect on our life - despite our best efforts otherwise.
      I recall how adamant I was to do whatever was necessary to ensure that the accident would not be a defining moment of her life. That was of course a failed enterprise. There is no way it could not have a lasting impact. The best we could do was work to shape the outcome so that she could draw from the experience and continue to grow and live life to the fullest. I think that we succeeded. Looking at this picture she just sent us from Reykjavík, Iceland, I know for a fact that she did.

     Similarly, when I was first diagnosed with cancer, I swore that I would not let it define me in any way, shape, form, or fashion. I guess I am slow to learn the obvious sometimes.  Like many, I planned on getting treated and going back to who I was before. Like many, I have come to learn that that, just like "high school Pete", and "Navy Pete", and "single Pete", "Pre-cancer Pete" is gone forever. My path has been unexpectedly altered. I now view the world through a different lens and think about things from a different point of view. I have a "thing" that I now have to be aware of, and monitor.  It is a mixed bag for sure. Some aspects of it suck, no doubt. But there are many unexpected positives as well. Good things that would not be, had this not happened. Things that I would not be willing to give up - even if I could.  My task at hand is not to ignore the inevitable, but to again work to shape the outcome so that I can continue to grow and live life to the fullest as well. I'm down with that, and I have a damn good example to follow - my own daughter. Thanks, Ash, for leading the way. It's time to get busy living, and "Roll With The Changes"(with a tip of the hat to REO Speedwagon). It is also past time for me to put my pile of papers and clippings in the fire as well. I don't want them anymore.

Things To Do.

July 16, 2016
Lots of things to do this weekend. I need to work on the garage door, mount a wall clock, get a hair cut, do some yard work, practice, laundry, and yes, get ready for my trip. I am also supposed to help at interfaith, and make it to church. Lots of things to do. Oh yea, I just traded my boat for a kick ass Taylor acoustic electric guitar. I need to hit the music store and get a decent acoustic guitar amp!!

It is seven thirty in the morning, and I am up - coffee in hand, taking Snowey to the poo park. Once the deed is done, We are back and I begin to replace the garage door rollers. They have been worn for some time, and it sounds like a Sherman tank is coming through the house every time it is opened. Like most things you put off for way too long, it doesn't take that long at all to actually do , and I was cooking breakfast by nine. Off to a great start.
  Then a fellow member of a cancer support forum that I belong to commented on a post that I had made. He and I have ad a few exchanges over the past few months. He is without a doubt one of the most positive and inspiring people on the forum. He has also been dealing with the ravages of cancer longer than almost anyone in the group. He has been fighting his battle for sixteen years. He succeeded in squashing it twice, and is now fighting in the third round. I can not begin to imagine all the at he has been through - both physically and emotionally. Though all of that, he has been a continual guidepost  to many - myself included - in our own journeys. Yet in his comment, he referred to me as "a brave man". WTH??!! This man has been though every imaginable reality of prostate cancer for over one and a half decades, yet can still smile at life, and then calls me brave? It just flat ass does not compute. I can not begin to put myself in his position. The thought of still doing all of this in 2032. Just, No! Not only no, but fuck,no.
 I sent him a private message to ask how he was doing. It wasn't long before he replied. That was the beginning of a chat that lasted well over an hour. We really began to get to know each other - our lives, our hobbies, families, children. we were chatting while simultaneously facebook stalking each other. The conversation was all over the map - from politics to art - speckled with pieces of very personal information concerning health, fears, and eventualities. I can not describe how I felt hearing someone discuss their own death. I know that I was humbled that he would share such things with me - a total stranger. I will not get into all of the details, because that was between He and I. Although he is pretty much an open book on the forum, it is his story to tell. Not mine. I know for a fact that it was time well spent.Yet another person that I have gotten to know and admire on my journey. I hope that he enjoyed the exchange as well. Of course, I am now way behind schedule, and need to hurry to get to Sam's barber shop. They close at 2PM, but you really don't want their 1:45 haircut. I guess I will have to postpone some stuff. It's all good though, because I had much better things to do.
         Made it to Sam's by 1:30 - no sweat. Sam is my favorite barber. He actually cut my hair when I was a kid. My dad would have him give me a crew cut, but leave a tuft in front to comb back with old spice short cut gel.

  To this day, Sam is the only one that really knows how to deal with my wavy-assed hair. He is been doing it since I was seven, so I guess that he should have it down by now. I have absolutely no idea how old he is, but there isn't a grey hair on him. The Rolling Stone of barbers, I guess..
With my haircut done, time for lunch. It just so happens that Lorito's Italian kitchen is one door down from the barbers. Imagine that! almost like I had planned it.  They have the best cheeseburger in town.
with a fresh haircut and full belly, I decide to head to the consignment shop at the other end and walk off my burger (or at least part of it). We have picked up a lot of stuff for the house there - from major furniture to decorations. I wasn't looking for anything in particular, just browsing. Lots of cool and interesting things, but nothing really strikes a chord - until I poke my head into the bargain closet. Everything there is five bucks. Then I see this old school aluminum stove top coffee pot. Hand painted with a covered bridge scene. I don't know why, but I immediately grab this thing up. It has some dust and dents, but just cool as hell. Every single pot of coffee my mom ever made cane out of one of these things. I remember when Mr. Coffee coffee makers first came out. She would have none of it. Coffee was to be percolated. and not by one of those damned electric coffee pots either. Stove top only. I can only imagine the disgusted look that she would give, had she ever seen the modern day Keurig contraptions. I remember her last couple of years. She would continually lose the glass top to her pot, and I would have to constantly go to Reddick Brother's Hardware in Micanopy and buy replacements. When I explained to them what was going on with her dementia, they promised to keep one in stock for me at all times. Local hardware stores are good about things like that. Thinking back, she might have been intentionally "losing" them just to make me feel like I was doing something of value. In her more lucid moments, which were often her hardest, she knew that there was nothing any of us could do to fix things. But she knew the importance of keeping busy. "Idle hands are the devil's workshop, and lead to stinkin thinkin". something she said often. So yea, it is very possible that she purposely lost them just to give me something to do. Anyway, the pot is mine, and it is now perched high in the kitchen on top of the cabinets. Funny how such a small thing will trigger a memory.
It is now almost four. I promised some friends that  I would help serve dinner at the Interfaith homeless shelter. The original group had backed out at the last moment, so this was a last minute deal. I had helped before though our church, so I knew what to expect. If you have never done this before, it is an experience like none other. We served probably 30-40 meals - all brought in by volunteers. When you see these people, and the thankfulness in their eyes, your heart melts. These are people - mostly women and children (the men eat whatever is left over later), are genuinely in a tough spot, and genuinely grateful and polite. Even the young kids. One of the most striking things is the way that they lookout for each other. The way that they make sure that food is set aside for others that have not arrived yet due to a job or something. Even though they themselves are homeless and hurting, their first instinct is to reach out to others. In many ways, very similar to how we on the cancer support group try to support each other. Maybe the willingness to love our neighbor is much closer to a reality than we realize. But why does it take hard times to do the right thing??
It is now 6pm. Time to hit Guitar Center and look at that amp. Yea, it's pretty cool, but I really cant get excited about it. I am trying really hard to like it, but just not there. On the way home, I begin to think about the day. What a day. I didn't get half of the stuff done that I had planned on, but some really great things happened instead. Important things happened. Human things happened. It was a good day.

And that guitar amp? Never mind. They can keep it.  It's just a thing. It is pretty insignificant compared to all the good things.

...And Beyond.

I guess it was sometime in October of 2014. Bill and I were eating lunch and decided to plan a trip to Quetico. By December, we had recruited Larry & Mark as well. By Feb 2015 we had decided on the time frame of late summer 2016 and selected our outfitter. It was going to be an epic fishing trip. Two weeks of remote wilderness fishing, camping, and canoeing. Then came July 1015 When I was first diagnosed. As my long term treatment plan began to unfold, what began as a fishing trip became my personal end game goal. The dangling carrot, if you will. I regularly mentioned it to both my urologist and later my oncologist - making my intentions clear. "Do what you need to do, but come August 2016, If I am still alive, I am going to Quetico." I set about a personal plan to try and be ready and attempt to stave off the well documented side effects of the treatments that lay ahead. Within a week after surgery, I was back to walking a mile. After six weeks, I was back on a bike and lifting light weights. I started doing local 5k runs in November, and kept this up all through the 39 radiation treatments that followed in 2016.  My colleague at work and I would also walk 2.5 miles every day at work as well. My hardest effort was to fight the lupron based urge to start backing off. That famous lupron fatigue. I was due for my next 4 month shot the week before we left, but got the approval from my medical team to defer it until after the trip. My argument was simple. If two weeks or so made that much difference in my outcome, it in reality made no difference at all. Game, Set, and Match. With much support and encouragement from many, off to Canada!
 
           The trip was a huge success - beyond my wildest dreams. There are many fish tales to tell and scenes to describe. Many pictures -none that even begin to do it justice. They just serve as visual reminders of the bring-you-to-tears indescribable beauty that I was blessed to experience. But I will focus on one story. It is a story of day nine. The day things went wrong. The trip had been going along fine - though a little fast paced for my liking, but fine. There never seemed to be enough time in the day to just sit and reflect. I was hoping for some really meditative quiet moments to recount my past year. At first, I could not understand why the others did not seem to feel the same way. Or at least understand my need. Then I started to realize that they too had their own agenda and sense of urgency. A couple of my friends are older than I (by over a decade). They both love the outdoors, and they sort of knew that this might be their last big adventure, thanks to none other than father time. I think that is an important lesson for me. Just because someone doesn't have cancer, or doesn't seem to "get" all of cancers implications, does not mean that they are not wrestling with their own personal set of demons - that are no less emotionally taxing than my own. perhaps we had all developed a personal plan to make sure that we made this trip. But I digress. Back to day nine. After eight days of great fishing and weather, we began to realize that we were way behind on our traveling in order to reach the designated pick-up point on Sunday at 1pm. So with that in mind, we would make day nine an all out travel day. 0530. First civil daylight, we are up. Mark began making coffee and a quick breakfast as I began to break down our gear. Bill began doing the same, and prepping the other gear to travel, as Larry began to stow the bear hang. We had a lot of canoeing ahead as well as seven or eight portages in store. One portage was a treacherous 190 rods over steep terrain - as indicated by the elevation contour plots on the map. A "rod" is a unit of measure that is unique to this type of thing, and equates to approximately 16.5 feet. Over each portage, we have to carry both canoes (46 pounds each) as well as six gear bags that weigh 40 ish pounds each, plus paddles, fishing rods, etc. So each portage requires multiple trips.
As we get ready to break camp, Bill walks over to a tree and begins to throw up. This is not good. We have all taken precautions for proper sanitary concerns, and either filtered or boiled all of our water. Even with all of that, he was clearly not well. After a couple of episodes, he said that he felt good enough to travel, so we set out - keeping a watchful eye. We had a hard time finding the first portage due to a downed tree, but eventually located it and made it through. It was only 22 rods and mostly flat. Two miles of paddling to the big portage of the day. The gps showed two portages side by side - each leading to a different lake. We were to take the left one. So we started on the left one, and in short order, it came to a fork as well. We started on the left of that fork, but after a short while, I was convinced that it was the wrong one, so I convinced everyone to go back and take the other. After about 3/4 of a mile, it came out to a lake. Some of us went back for the rest of the gear while Mark hung back with Bill to make sure that he hydrated and rested. When we got all the gear there, we broke out the paper maps and gps. It was then that we discovered that I had been wrong. I had sent us to the wrong lake. How could I have done this!!?? I was furious with myself for making a mistake that cost us so much time and effort - especially with one man down. On our already hardest day. Without saying a word, I immediately grabbed a pack and began backtracking. Cursing myself  the whole way. As it then began to rain. Of course - why wouldn't it? I couldn't imagine what the rest of the guys were thinking of me about this. In actuality - they were not upset much at all, as I found out later. They knew that I was upset, but they - having been here before - knew how easy it was to make such a mistake. Meanwhile, I was busy making a mental mountain out of a molehill - something that those of us on Lupron are more than capable of doing at a moment's notice.
Somewhere along the way rushing up the rocky pass in a personal fury, heart about to leap out completely out of my chest, it occurred to me that I needed to let it go and focus on helping Mark & Larry get everything over while keeping an eye on Bill - who at this point is still sub-par. Things got a little better. On the next and final trip over the pass, something else happened. I realized that in a moment of need, I was still able to step up to the plate and get it done. Despite all of my assorted treatments and side effects, I could still reach down deep inside and summon the man that I was before all of this cancer crap started. It was at that point that life got better. I began to stride up that pass with confidence and a cadence saying  'Fuck you, cancer, Fuck you, lupron, I'll race you both to the top!" the whole damn way. I was alive again. Really and truly 100% alive. Invincibly alive for the first time since I was told those famous words "you have cancer" over a year ago.

After finally finishing that portage, we had a snack, some water, loaded our canoes and headed for the next of several portages, creeks, and beaver dams. I met each portage with a smile and relished every slippery and rocky step. This was my day to shine. Carrying the last of the gear at the end of the final portage, I showed up with two packs - (one on front, and one on back) doing my best Michael Jackson moon walk. Larry noted that delirium had obviously set in..lol. We finally made camp around 6:30 pm. All completely exhausted, but it was a good exhausted - at least for me. My worst day had become my best and most memorable day as well. I slept soundly - with a little help from a nip of Yukon Jack . And we came close to our travel goal. Bill made a full recovery the next day as well.
As I sit here reflecting on the trip and this particular day, I am smiling ear to ear. But I also wonder what lies in store now that the trip is over. It has been by end goal for a while now - even the name of this blog "The trip From The Operating Room To The Outfitter". I guess I need to add a couple of words. How about "The trip From The Operating Room To The Outfitter...and Beyond"? I think I like it.
To quote Martin Sheen's character, President Josiah Bartlet in The West Wing series, "OK, What's next?".