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?".

Don't Stop Believing.

June 6. The day of reckoning. After eight excruciatingly long weeks of waiting, I arrive at the blood lab for my first post radiation PSA test. I request the older Jamaican lady, mostly because she is probably the most experienced and least painful of the phlebotomists there. Besides, a little good juju couldn't hurt right? I am not superstitious, but in a pinch, I'll take whatever I can get. She read the order out loud, including the name of the doctor that ordered the test. Followed by a silent acknowledgement that she knew the importance of the test from it being ordered by an oncologist.  I replied that hopefully it would return good news. I think she detected the exasperation of the wait in my voice."Not to worry. All will be fine.", she said with a soothing heavy accent and a reassuring smile. I needed that. A lot.
   Next came the worst part. Waiting on results. It usually takes two days before I get the email. Wednesday came and went. No results. perhaps the doctor put a hold on them. I had an appointment the following Monday, so that was worst case. Thursday morning. Nothing. Then, at exactly at 10:31 am, my watch gets a notification from my phone that I received an email from the lab. Here we go. I think I stared at the log-in screen for almost five minutes before I summoned up the courage to log in and look.

NON-DETECTABLE!!
Yea, that's what I am talking about! Now, I am well aware that the Lupron is playing a big part in that number, but I will take it as a win. The monster flinched! He ain't dead yet, but the fucker damn sure got his bell rung. I will put that in the win column for the time being. Armed with that good news - It was time to go to a rock concert with my daughter! We had tickets to see Journey & the Doobie Brothers in Tampa on Friday night. We had a blast!! got a hotel room for the night & ordered pizza, went to the show and rocked the night. I don't have the words to describe how awesome it was to share that experience with Ash.We got back to the room at midnight and finished the pizza. We had to get back up at 4am to get her to the airport. She went to Oakland. I went back to the room for a few more hours of sleep. Great times.

Monday June 13th - I meet with my oncologist. This was my first visit since finishing IMRT. It felt really good to see all of my therapists. They seemed genuinely happy to see me. They all remembered my name without looking on my chart. That meant a lot. Considering how many patients they see, it really meant a lot. The actual visit with Dr. B went well, but he came across more guarded against excess optimism than I thought he would. He stated matter of factually that the Lupron was responsible for my zero - that the radiation would have not had that much effect yet. We did discuss how long to stay on hormones and how to balance the side effects with the aggressiveness of my particular cancer. He seems to think that I should take  at least one more shot. I will see him again in December. Meanwhile, I have another PSA test and see my urologist in July.
Sunday. June 12, 2016. I woke to the news that there had been a shooting in Orlando. Forty-nine people murdered inside a gay nightclub. So much hate in the world.Hate crime or act of terrorism. That is the fervor on social media - that and all of the pro-gun/anti-gun bullshit. It really makes my sad when things like this happen. Then the predictable fallout - everyone very predictably retreats to their preconceived notions concerning race, religion, guns and orientation. It happens every time. No one is willing to modulate their preferred position just a little. As a result, nothing ever improves. Just "thoughts and prayers" for the latest round of casualties - flung like fairy dust from politicians trying to bolster their probability of reelection. 
Father's Day, June 19th. This was probably the weirdest day yet. It was a great day, but I was sad none the less. Over what, I have no earthly idea. Nothing at all had upset me, but I was on the verge of tears all day. Every time I tried to talk, a lump would form in my throat, and I would have to walk away.  Michelle kept asking what was wrong, and I kept telling her that nothing was. I felt bad because she was trying her best to make it a good day, but I could not shake what ever it was. Hell, I couldn't even define what it was. It just was. Then it was gone. I still can't explain it.
Our Quetico trip is now a month away. All of the major plans are made. Now it is just the final details of packing the essentials. I am meeting Larry on Sunday to do some practice paddling.
It looks like this trip is going to happen!!!

Ductal.

Ductal. That word is used twice on my pathology report. I read it again this morning.  I probably shouldn't have, but I did. It's what you do when you are done with salvage radiation and one month in to a six week wait before your next PSA test to see if the radiation and hormone therapy is doing its thing. This waiting is the hardest part yet. My mind wanders. Often to places and scenarios that it should not. But none the less, it does.  So I go back to my initial biopsy report.
H: Right Lateral Apex
PROSTATIC DUCTAL ADENOCARCINOMA, INVOLVING
7O% OF THE SURFACE AREA, IN 2 OF 2 FRAGMENTS .
PERINEURAL INVASION NOT SEEN.
NOTE: The behavior of this tumor is analogous to acinar
adenocarcinoma Gleason score 4+4 : 8.
I: Right Mid
PROSTATIC DUCTAL ADENOCARCINOMA, INVOLVING
<5 % OF THE SURFACE AREA.
PERINEURAL INVASION NOT SEEN.
NOTE: The behavior of this tumor is analogous to acinar
adenocarcinoma Gleason score 4+4 = 8.

Googling "ductal prostate cancer" reveals a few (but not many) very detailed documents that contain some pretty damming information.
"One histological variant of PCa is ductal adenocarcinoma, which has an incidence ranging from 0.5% to 6% of all diagnosed PCa [ 1,2 ] ." -source document
"Ductal adenocarcinomas are more likely to be high grade and present with distant disease, and they carry a significantly increased mortality risk in those with locoregional disease independent of pathologic variables and treatment." - Source document

So yet another seemingly innocuous word, "ductal"- a word that sounds like should be used to describe a suitable duck habitat, or at least something that involves gray tape - creeps into my diagnosis vocabulary. I saw it all along, but was completely oblivious to it's implications. Hell, I was (and still am) still trying to come to terms with the word "cancer".
 After reading all of the scholarly articles, just what conclusion am I supposed to come to? Just what the fuck does it all mean? Studying the  article, Metastatic ductal carcinoma of the prostate: a rare variant responding to a common treatment, I read the following  - "Four years following the completion of radiation, he developed hematuria and symptoms of urinary obstruction. Cystoscopy and bladder biopsies at that time confirmed recurrent ductal adenocarcinoma of the prostate and his serum PSA increased from less than 0.03 to 0.31 μg/L. He underwent urinary diversion with an ileo-conduit".
My father had a prostetectomy, and later a urinary diversion surgery due to cancer that had metastasized in his bladder. At the time, it was attributed to his life long tobacco habits, but I am not really sure that I buy that at this point. He passed away in 2008.
So, what the fuck does it all mean? Am I headed down the same path?  I know that I had a cyctoscopy prior to surgery, and the bladder was clean, so I have that going for me. I am in very good overall health - that is a plus.
  I have something else going for me. I am still here. That is huge. I am still capable of doing pretty much anything I want - although I tire a little easier than before. I am alive. I am alive.
I remember the day that I received my PSA results post Surgery. January 9th. I got the email on Saturday morning. I was literally on my way out the door to do a 20+ mile bike ride with my neighbor, Gardner. He was instrumental on getting me back on the bike last year after my surgery. Reading the results, I knew the fact that my PSA persisted at 0.95 bought me a ticket to radiation. I was scheduled to see my urologist the following week, but I had done my homework and knew the deal. It was what it was. I grabbed my water bottle and headed out to ride. We had a great ride. Talked about a lot of different things. Perfect weather. We finished up the ride and made plans to ride the following Saturday. He also rode on Tuesdays and Thursdays, being retired at 72 years young and still in perfect health.
I met with my urologist the following Wednesday to discuss my options, which consisted of radiation and possibly hormone therapy. He also referred me to my soon to be oncologist. The next day (Thursday Jan 14th), while at work, I read online that there had been an accident. A 72 year old man, while riding his bike, was hit by a truck. And just like that, Gardner was gone. Perfect health, and killed in an instant just less than 2 miles from being back home after cycling for over 30 miles. My neighbor - the man that helped motivate me to get back in the game after surgery - was taken out by the momentary distracted driving of a total stranger.
.http://www.legacy.com/obituaries/ocala/obituary.aspx?pid=177368759

 Meanwhile, I am still here. Cancer be damned, I am still here. Radiation be damned, I am still here. Persistent PSA be damned, I am still here. Ductal be damned, I am still here. Hormone therapy be damned, I am still here. In a puddle of sweat from hot flashes, but still here, none the less.
I guess that is what it all means. It means that I get to spend more days with my wife. I get to watch our recently graduated daughter prepare for grad school in London. I get to see a few more sunrises and sunsets. I get another chance to try and make a difference in the world. I get to travel to Quetico in just over two months.
So I wait. I wait on an upcoming blood test. June 6. It will take 4-5 days after that to get the results. Results that will indicate whether we have this thing turned around, or we have to try something else. Meanwhile, I am here and alive. And that is huge. Regardless of the results of this test or the many that will  come after it, I have to continue to appreciate every day that I have, and, as the song says, "Take it to the Limit, one more time".

Random thoughts

4/27/16
Back in February when I first started radiation, I got three green dot tattoos to serve as alignment markers. One on each thigh and one in the pubic area. In an attempt to help the therapists, with one swath of a razor, I shaved the area immediately surrounding the dot in front. No more than necessary, but I figured that they didn't want to root around down there any longer than necessary trying to find it (the dot). So there it is, my initial foray into "man-scaping". It is now the end of April, and there is not so much as stubble in that spot. Zero. Nada. From a guy that has hair on nearly every square inch of his body.  I guess that the Lupron is actually starting to take hold. Out of everything I have been through so far on this journey, I don't know why that singular insignificant thing bothers me so much, but it does. Maybe because it is the first outwardly visible indication of what is actually going on inside. I don't know.  On the good side, What the prostectomy took away, perhaps the lack of hair will give the perception of adding back. Just some crazy shit from left field.

4/28/16
Last night was a great night. Surgery, radiation, and hormone therapy be damned, it was a great night. I was able to experience something with my wife that I thought I was never going to be able to experience again. It felt good. damn good.
About a week or so ago, I was watching TV. Michelle had already gone to bed. It was Nurse Jackie on Netflix. There was a gratuitous sex scene. Suddenly, things started "waking up". I was actually feeling the beginnings of an erection. That hadn't happened in several  months. Things had just started coming back after surgery, when I was put on hormone therapy in January. That pretty much killed everything. I was even denied the well documented "Lupron bump"by being placed on firmagon first. That combination pretty much made my big toe far more entertaining than my penis.  Imagine my surprise when this started occurring three months later. Well, I did what every red blooded guy would do in this situation, I decided to try and help things along. and it worked. Hot Damn!! The next night I decided to try it again - this time with the help of a small pill. It took a little effort, but it worked. After the third night , I told my wife of the improvement - that things were not quite ready to "go live", but definitely on the upswing. And I emailed my urologist. As much as the guy in me was going "Hell Yea!!", the engineer in me was going "oh shit - if the lupron isn't doing what it is touted to do in this way - what else is it not doing!!??" My urologist reassured me if my ED was improving even while on lupron, it was definitely a good thing. Only one thing left to try.
Last night was a great night. I will leave it at that. I also slept better than longer than I can remember. Straight through the night (afterwards).
I am not sure how long this will last. Common sense says that the longer I am on hormone therapy, the more it will take control. I am going to damn sure seize the moment while it lasts. You can bet on that.

04/29/16
I decided to get up early and drive to Gainesville to see Charlie. He has been on my mind for a few days. He was at my bell ringing, but I didn't get to catch up with him afterwards. I just felt that I should check and see that he is managing ok. He seemed genuinely happy so see me. I didn't go in - just chatted in the parking lot. Told him that I had an appointment down the street.He said that he was managing it well, but his eyes told a different story . They were sort of sunk in. He did ask if the energy came back. I assured him that it will return quickly and that digestive issues would improve rapidly as well.  I gave him my contact info and told him to look me up if he ever wants to feel better about his golf game..and to call when he rang out!!
Glad that I made the trip to Gainesville. it was worth it. Now time to get ready and go to St Augustine for Ashley's graduation!!!

5/5/2016
One of the most frequent themes I hear when telling someone that I finished radiation is "Good. Now all that is all behind you". That is the way we live our lives these days - from one concern to the next - never focusing on any one thing for any length of time. Most people do not dwell on things for long. Just like the 24 hour news cycle, we need to move on to the next thing. Perhaps it is not that, but they are trying to be positive and encouraging. The thing is, what becomes more clear every day that I am on this journey is that there is no "putting it behind you". It is a thing that will be there from now on out. It will at least partially frame every other aspect of my life. I am currently waiting until June to take my next PSA test. Then three months after that..and on and on. I just read a post on line from a man that was good for two years after his treatment, and it just started returning. back on hormone therapy he goes. So I wait. I wait for a test in June that really won't tell me much - hopefully. I am still on HT, so things should be completely suppressed. Just a baseline. Anything other than undetectable means that my cancer is resistant to both radiation and lupron. That is a possible outcome, but very unlikely. It will most likely return undetectable, as will the next two while I am still on the lupron. then once I start coming off lupron, the real story will be revealed - sometime around the end of the year or next. Then monitoring. waiting . wondering. All out in front of me.

Graduation, Mother's Day, And the Ocean

                                                             

Saturday, April 30th, 2016. Ashley graduated from Flagler College with a bachelor of Arts in History. What a proud moment. I do not think that I have ever seen her that happy. A no-holds-barred fully animated sort of happy.
Michelle and I spent the weekend at Anastasia State Park campground. It seemed only fitting. We stayed there in August 2012,  the weekend that we dropped Ashley off as an incoming freshman. I remember that day. The day we packed up the camper and drove home without her. I don't think a single word was spoken the entire way home. I don't think either of us were capable of speaking without breaking down into tears. I guess that you can only hold on to something for just a little while.
Fast forward almost four years, and here we are again. A few more tears..this time somewhat happier than before. All in all a good commencement ceremony. Lots of happy faces. She spent the night with us at the campsite making smores over a campfire and talking. Just like we did so many times when she was growing up. Of course, this weekend also came with more news. She was offered an opportunity to do her graduate work at Hull University in England. What an opportunity. It means that she will be out of the country for at least a year. maybe two. Without a doubt she has to seize this opportunity. Of course, that means that I have to muster up the courage to buy her a one way ticket to England, all the while maintaining a smile. I guess that you can only hold on to something for just a little while.
Michelle and I took a nice walk on the beach this morning before we left. You could see families setting up for a day of fun. A couple of toddlers playing in a tidal pool. It really doesn't seem like that long ago we were doing the same thing - watching Ashley chasing birds up and down the beach. Back then we would occasionally see older people walking and looking wistful as they watched all of the commotion. Probably reminiscing about when they had a young family.  I get that now. I know what they felt, because I am now where they were twenty years ago. And those older people we saw way back then - they are more than likely not even around anymore. I guess that you can only hold on to something for just a little while.
Mother's day is next weekend.  Mom died the day before Mother's day in 2014. I was thinking about that while walking in the surf this morning. I was thinking about the fact that to this day, I have never shed a single tear over her passing. Not one. I have no idea why I haven't. I loved her very much and miss her every day. I miss the woman she was before Alzheimer's took her away. But I guess that you can only hold on to something for just a little while.
I went by her grave a couple of weeks ago. That is where you are supposed to be able to get closest to those that have died. Nothing. I felt absolutely nothing. And no tears. And no real sadness. What does it all mean? I do know that, over the past several months, I have seen her look at me through other people's eyes. Total strangers. I catch it out of the corner of my eye when I least expect it. That look - her look - her eyes resting calmly above her high cheeks. Her distinct smile. Then it is gone. But it was there for a moment. I know it for certain. To be quite honest, it scares the hell out of me. I'm not one to buy in to supernatural or religious stuff, and am definitely not one to "look for a sign" - but it has happened on several occasions now. Maybe mom has my back on all this cancer stuff. Maybe I need to get things in order in the case that it doesn't go in my favor. Maybe it is just the lupron and everything fucking with my mind.
                                                              

You ever notice that while walking in the surf  - oh about ankle deep - and something catches your eye? You reach down to get it, but before you can, another wave comes by and takes it away. The ocean, she is funny that way. She holds on to most all of her secrets most of the while.  This morning was no different. As I walked along, reflecting on graduations, family, mom, and cancer, my eyes were scanning the surf. Lots of cool looking stuff, but before I could really see what it was, it was gone. Is that a sand dollar? Got it..no..just a cracked piece of shell. Twenty years of visiting this beach, never really found anything that cool in the surf. But wait. That right there! That really is a complete sand dollar. Of course as I reach for it,, another wave comes in. As the water momentarily recedes, it reveals..the sand dollar is still there. I pick it up. The ocean missed her opportunity, and I got it. I Guess I will get to hold on to it for a little while after all.