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The Walk, the Shock, and radiation

May 9, 2016

THE WALK

Sunday the first of May was the 2016 Seattle Brain Cancer Walk.  Once again I was overwhelmed with the amazing support and turnout for Team Defeat Goliath.  This was our 5th walk and out of the 5 years, Defeat Goliath as been recognized for being in the top three of largest teams or top three for most funds raised 4 times! 4 times!  That is awesome.  This year we had the second largest team!    The walk has always been both an amazing and challenging day for me.  It’s a chance for me to reconnect to other brain cancer warriors, get updates on how they are doing and get information about treatments and options.  However it also is a big reminder of why I am there – Goliath.

A huge thanks to everyone who has joined us, donated to the cause and supported the team over the past five years.  This year was especially important for me as I am back on treatment again.  Proton radiation to be exact.  Although I am being treated at UW and through the Seattle Cancer Care Alliance ( Which is made up of UW, Fred Hutch and Children’s Hospital), all of the funds from the walk go to the Ivy Center, which is at Swedish Hospital.  The Ivy Center is a wonderful place that is working hard to save lives and does have some of it’s own clinical trials.  The person who heads it up, Dr. Charles Cobbs, is the person who has been providing me with a second opinion with my care and treatment options.  I have also been working, in a small capacity, with him on a non-profit project he has been trying to get going.  I can say for a fact that all of the funds raised are going to a great cause.

Team DG

Funding, research and knowledge are critical at the moment in the brain cancer world as cutting edge treatment is being altered by which types of treatment insurance companies will and won’t approve.  I was not approved by my insurance carrier to receive proton radiation, my insurance company, Premera, claims that this type of treatment is experimental and thus is not approved for low grade tumors like mine.  However they will approve photon radiation, which, based upon my research will most likely leave me with some type of cognitive issues or a different type of cancer in the future.  It doesn’t make much sense to me.  But if I was a child I would be approved.  But since I am not, Premera would rather take my career away and prevent me from being a productive person in the economy, by destroying my brain just to save a buck.  However I think, by being so difficult, they are really just pushing out the expensive healthcare costs down the road to the future.   Why not use the least harmful methods now?  It really doesn’t make much sense.  Here is a link to a Get Jesse Story from KIRO News  7 about this very issue.  I meet Ronnie just after he was diagnosed and we served on a focus group together.  He is awesome for taking on the insurance companies for all brain cancer warriors and is a huge hero!

Ronnie Castro Story

I do have some help in paying for my treatment, the SCCA has agreed to cover the costs of my treatment up to my normal out of pocket amounts. Then they will take on Premera to get them to pay.  I have already signed the paperwork to one guarantee payment and two give them the authority to fight on my behalf.  They are basically covering what my insurance will not.  However it still really sucks and is infuriating. It is because of people like Ronnie that SCCA has stepped up to make sure that people get the treatment they need, in spite of the negligence of the insurance companies.   That is something that is not forgotten by me. Something that I am going to see what impact I can have in challenging the insurance company decision makers.

THE SHOCK

This past week has been a challenging one.  A friend and co-worker of mine passed away last week.  I first met Stan Rossi back in January of 2010.  My firm hired him as a staff accountant.  Like me, Stan was an early morning riser and we quickly found the we would be the first people in the office cranking away during tax season.  I quickly learned that he, like me, lived in Snoqualmie Ridge.  He had an interesting career path, from having a medical practice as a podiatrist, to giving it a go in acting in Hollywood.  After selling his practice, Stan had some down time and decided to start a second career as a CPA.  Stan was always a super hard worker, who was extremely dependable.  He was also a very caring person, on the weekends during tax season once he was done, he would go visit his mom (she is currently 99) and would take her to dinner.  They way he spoke about that time, it always seemed to be a very special time for him.  We would have some fun debates about how to apply the tax code to various client issues.  We had a particular testy debate about Savers (Value Village).  Savers the parent company is actually a for profit company.  Thus Stan was adamant that you can’t deduct a donation to a for-profit company on a personal tax return.  I ended up doing research about the company and how it does qualify for people to make tax-deductible donations to.  He finally gave in to my research memo.   We soon both discovered that we both were runners and that instantly became a bonding factor between us. We would have long talks about our approaches to running and how they differed.  Stan was more into getting fast times and I was more into running trails and running for fun. Stan would list races that he ran and the times he got. It was impressive.  I would tell Stan about my running plans for the week (during tax season, I run Snoqualmie Ridge in the dark via head lamp) That started the daily game, Stan would look for a runner with a headlamp on the days I ran and would always be trying to find me.  He would see a runner with a headlamp and would ask me where I ran that morning.  When he would see me, he would light up with pride for seeing me.   After tax season in 2010, my company and Stan came to a mutual agreement that a full-time role was not going to work out and thus Stan was laid off…

Stan and I still kept in touch after that and a few years later, we were in the market for some tax help during our busy season.  Stan was the first person we contacted and in 2013, he was back!  Stan was not a person to tread lightly nor mince his words. I will never forget the first time I saw Stan when he came back in 2013.  He looked at me and said ” David what happened?  You do not look like the same fit person I remember.”  I told him that he was correct and yes things had changed.  I explained to him that I was diagnosed with brain cancer, had surgery in 2011 and did a year of chemo in 2012.  I told him that indeed, it had taken a toll on me and that I was not as fit as I used to be.  Stan worked for us in 2013, then 2015 and again this past year in 2016.  He was a marvelous tax season wonder and helped us out greatly.  Stan would come in on his own time to attend meetings and would come in to do some training on his own time. That is very hard to come by.  That is integrity and dedication.  We finished tax season this year on April 18th.  We had many a long conversation about the increase in property taxes in Snoqualmie (I would conclude by saying thanks for helping to fund my kid’s futures schools) as well as talk about the NFL draft.  Which was sort of like second Christmas for Stan.  After tax season ended on April 18th,  our office was closed on the following Friday.  The next Monday, I got a call from Stan in the morning, he told me that he was not going to make it in as he was in the hospital in the ICU and wasn’t feeling good.  However that was supposed to be his last day.  Typical Stan, he wanted to make sure that everything was in place for his last day, that his hours would be properly recorded.  I told him that I would make sure that everything would be handled and that he just needed to worry about himself and getting healthy.  Later on Monday he called me back.  I asked about how he was doing and he said that “things are worse than he thought.”  That was scary to hear. That would prove to be our last conversation.  I went to the hospital on Tuesday, only to find out, that due to hospital rules, nobody could talk to me about his condition.  Stan was in the ICU when I saw him, he was asleep and snoring.  I left a card that was signed by the  whole office.   The lack of knowledge was frustrating for me to deal with for me.  The next day, we were able to get in touch with his neighbor, who was the medical power of attorney.  He gave us the basics on Stan.  That was helpful.  Based upon the initial diagnosis, it seemed that he would be soon on the road to recovery.  The next time I saw Stan was Friday of that week, when I came back to the hospital this time, I discovered that Stan was now on a ventilator. The card I left, sat in the same place, unopened and untouched.  Meaning he never regained full consciousness that whole week.  My experience says that once someone goes on a ventilator, they don’t ever get off…

Stan died that following Monday.  I was in shock, granted he was 69, but he was fit, sharp and healthy.  To see the rapid decline over that week was, and still is hard to believe. To see him on the ventilator was simply heart breaking.  Stan was a great man and someone that I will certainly miss.  We still have an after tax season beer waiting to be had…  I salute Stan Rossi a, great man and friend.

RADIATION 

One question that people have is how is radiation?  The truth is so far so good.  I am 3 weeks into a 6 week cycle.  My hair has just started to fall out. So  far it’s just been around where the radiation is entering my head. Outside of that I feel pretty good, although I think my energy levels have decreased a little since the start of treatment. The facility and the people have been wonderful. Each session has been on time, and I am in and out.   From what I am told, the side effects should continue to build, but I am hoping to be able to push through. So far so good, but I am not out of the woods yet…

DEH

DG

 

Doing the Walk

March 17, 2016

Sunday, May 1st is the Seattle Brain Cancer Walk.  The walk has always been a special day for me.  A chance to be surrounded by people who love and support me.  It’s a chance to help raise some funds that go to support the Ivy Center at Swedish  (a huge portion of the entire operating budget of the Ivy Center is raised by the walk each year). It is also a chance to connect and reconnect with others who are traveling a similar path that myself and my family have been on the past several years.  Since 2011, I have made friends, had treatment conversations, and have kept in contact with many of these amazing warriors against brain cancer.  It is hard to describe the instant connection you can make with other brain tumor warriors.    You can instantly understand the shock, the fear, the questions, the seizures, the grief, the chemo brain, and everything else that comes along with brain cancer.  For me, I have realized that some of my hope rides with many of these people. I read their blogs and stories, and I am brought right along with them. I feel the victory of a stable MRI, the celebration of a finished treatment cycle, and the hope of new treatment opportunities.  On the flip side, I also feel the pain and angst of the MRI report that says the tumor is growing again, the challenges and side effects that come with treatment, the pain of the setbacks and ultimately the loss of a fellow warrior.  That is the hardest part, but I have also felt so much hope being surrounded by family and friends at the walk these  few past years. I hope you will decide to join us this year!

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The 2016 Walk, will be reminiscent of my first walk in 2012.  At that one, I had started a chemo cycle the Monday leading into Sunday’s walk.  After the walk I skipped the family lunch and went straight home and slept for 3 hours.  That cycle had proved to be the most difficult one for me of the year I spent on chemo.  This time around I will be starting proton radiation on April 18th, so I will be two weeks into treatment when the walk takes place.  I am hoping to feel great, but time will tell.

It would be great if you want to be a part of Team Defeat Goliath for this year’s walk.  You can either register to walk with us or you can donate to the cause.  Either way you can click on this link to do one or both.  Team Defeat Goliath

DG

DEH

 

Passing on the Outdoor Passion

January 4, 2016

So I started this post back in September and I am finally getting around to finishing it up.

This labor day weekend was supposed to be the grand capping event to an amazing summer of climbing with my boys.  The target was Mt. Daniel.  Mt. Daniel is the highest point in King County and it just below 8,000 ft. tall.  Although its a glaciated peak, it does feature a “scramble” route to its top, in which you follow a rocky ridge to its East Peak, where you can then traverse over to the true summit.  I have actual climbed the peak before from both the ridge and from Daniel Glacier, and both of my boys are completely capable of summitting this peak from the ridge route.  This summer Colby and Cade hiked up to Camp Muir (10,000 ft on Rainier),  summitted Mt. Saint Helens (8,363 ft. with snow), and their big peak was Mt. Adams at 12,281 ft. They also hiked to the top of Bandera Mtn. and McCellan Butte (both are peaks off of I-90) .  The planning for Adams started a little over a year ago, when they hiked up to Camp Muir for the first time (Colby was 9 and Cade 7).  They got their first take of being higher up on a mountain and both thought it was lots of fun.  Thus came the plan for Mt. Adams.  We devised a training plan and got them excited about the trip.  We got crampons and ice axes for the boys and we did some training in the snow this past winter.  Everything working towards the Adams trip.  I have led many groups up Mt. Adams – with lots of people climbing the mountain for the first time and I can honestly say they rocked it, no complaining, followed all instructions and communicated well how they were feeling.  All of which are huge to a successful trip.

When Jess and I first met, we were always out on some adventure, hiking, running, climbing (granted not much has changed). Before having kids we typically heard comments from people like “I used to hike and climb, but then I had kids and haven’t done it since.”  It wasn’t just one person, but quite a few.  It was like having kids was a prison sentence.  Once you have them, you can’t do any outdoor adventures any more!  That’s it, its all over.  We vowed not to be like that.  We decided that having kids would enhance our trips and adventures, not end them.  One of our first adventures with kids was a few months after Colby was born, we took him cross country skiing at the pass.  He was bundled up and then placed in the front pack.  We went to the Snoqualmie pass cross country ski area.  After a while of skiing, it was time for him to eat, so we stopped at one of the seasonal yurts that they put up.  We went inside and when I was opening up the layers to get him out a guy in the yurt let out a yelp.  “Is that a baby in there!”  he was in complete shock that someone would bring a baby up to the yurt.  Colby had a bottle and then we were off.  Over the years, they have done lots of outdoor activities that we both love.  Things like hiking, rock climbing, running, mountain biking, skiing, camping and kayaking. They have done them all!

Over the years, here are some of the things that we have learned about passing on the passion of the outdoors to your children:

  1. Don’t under estimate what kids can do: One thing I have learned is that kids are pretty amazing, they can do way more than most people think.  When it comes to outdoor adventures, kids can rock it.  They have less fear than many adults and can be highly motivated.  I think many people think that young kids are limited in terms of physical endurance and capability.  However, I have found that not to  be the case.  Recently there have been several articles in several running publications regarding a family that has three kids who all have completed in ultra-marathons, some say that type of activity will harm growing bodies.  The parents and the kids both shrug off those concerns and proceed to run long distances.  In reviewing the articles, there doesn’t seem to be any hard evidence on either side to support it being harmful or that it is perfectly fine for young kids to do.  I probably fall somewhere in the middle.  I don’t know that I would want my boys at their age to run an ultra-marathon.  Those things do put some strain on the body.  However I also don’t think that them putting in a long day on the trails will do any long term damage to their bodies. I would rather have kids that are getting outside, getting exercise, enjoying the fresh air, then sitting inside playing Xbox or watching cartoons.  Kids can do amazing things.  Often times we fall into the trap of thinking, “Oh they are just a kids, they can’t do that.”  However kids can do amazing things – don’t sell them short.  Remember back to when you were a child and how you were always trying to prove to your parents, your teachers, any adult for that matter, that you were old enough and capable enough to do all sorts of things.  Hiking is the same thing.
  2. Set Goals: Just like anything else in life, setting some goals and then working to achieve them is huge.  I am sure that everyone reading this has heard some type of self-improvement/motivational talk that includes some form of goal setting as part of the recipe for success.  Kids and hiking works the same way, set a goal, put it out there, and then figure out how to accomplish the goal.  We put the idea of climbing Mt. Adams to the kids, they got pumped.  We showed them pictures, we talked about how much fun it is to climb, and even better, how cool it is to glissade down from the false summit (glissading is basically a technical mountain term for sliding down in the snow on your butt).  After the goal was set we then put together the training. The boys needed to add another I-90 peak to their list in McClellan Butte, a trip up the challenging Granite Mountain, then we also planned for another hike up to Camp Muir on Rainier, a trip to the top of Mt. St. Helens, all of which would lead up to climbing Mt. Adams.  The boys were troopers. They were excited about the plan and worked hard to tick off each target from the list.  Each time knowing that it would get them ready for the big challenge later in the summer.  The goals kept the boys motivated and excited about putting in the hard work to prepare for the climb.
  3. Bribes are OK: The bribes for us started with skiing.  We quickly realized that a few skittles, M&M’s or other types of candy, go a long way towards keeping the boys motivated to keep going.  For each major hike, we always let the boys choose a special candy for the summit.  Typically its Swedish Fish and Sour Patch Kids.  It works!  That is all I can say.  Don’t let yourself get self-righteous and think that you are “above” bribes.  At one point early in my role as a parent I was confident that I would not have to resort to bribes.  I warn you, don’t do it!  Don’t think that you are “above” those types of things. Remember pride always comes before the fall.  On the ski slopes, its cold, it’s windy, you have tons of clothes on, it can really not be much fun.  This is where the bribes work the best!  Then you just apply the idea over to hiking.  Let them choose and think about their great treat the entire time up to the top.  I know that when I climb one of the topics of conversation is always about what type of food I am going to eat on the way home!  For most of my climbing that special treat is an ice cold Coca-Cola!  Nothing beats topping off a climb with an ice cold Coke!  On the top of each mountain, we all enjoyed sharing in everyone’s special treat.  You may call it a bribe if you like.  But it works wonders!
  4. Have Fun!: This is actually rule number 1!  Always have fun.  If you make it fun and a great time they will want to keep coming back.  This means that early on when your kids are young you might not make the summit, you turn around, eat the special snack (bribe), and go home!  Don’t push them until the trip becomes like torture.  Often times this is where parents go wrong.  They push and push their kids until the trip goes from fun, to uncomfortable to just plain evil torture.  Once it hits that point, you will start to lose them permanently.  Granted you will get into points of a trip where things are uncomfortable and most of the time you just have to get your kids to power through them (see bribes as the means to do this).  However you never want to move the trip over to the third category – torture.   For us that has meant the following:  trips up to the pass to ski where we only make one run then go home.  A trip on Mt. Si were we turned back at Snag Flats.  It means changing your plans to fit their plans.  However if you focus on the fun it will keep them going back for more, and that is the ultimate goal – keep them wanting to go back.  I know I hike and climb because overall it’s a ton of fun, thus they need to think it’s fun too.

So back to Mt. Daniel, we hiked in late in the afternoon and finished by headlamp to get up to our basecamp.  The plan was to climb the mountain that next day, then spend another night at camp and then hike out early the following morning.  We had a great time hiking up to basecamp.  The boys think hiking by headlamp is awesome.  The next morning we woke up to a tapping sound on the tent.  I woke up and thought, that doesn’t sound like rain.  So I popped my head outside and realized that it wasn’t rain it was snow, and a lot of it!  We woke up to about 3-4 inches of snow on the ground.  At first I thought, no big deal, we got this.  However after realizing that I didn’t have any of the boys snow gear, I decided that heading up would be a recipe for disaster. So we turned around and hiked out.

Because we got snowed out, we went on another scrambling trip, the following weekend.  I wanted to cap the year off with a great “boys trip”.  So we headed to Mt. Rainier National Park.  We scrambled up Mother Mountain and Pinnacle Peak.  The weather was great.  The boys did some cross-country ridge walking and then we descended a “climbers trail”  that really didn’t exist.  It was a wonderful trip with two amazing summits with continual views of Mt. Rainier and the boys got to experience some more of what scrambling in the Cascades really means. No clearly defined trails, crumbly rock, steep terrain, some scree, and stupendous views.

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Climb On!

DG

DH

Pending Treatment

December 26, 2015

After meeting with my care team of doctors, the decision has been made in terms of how to deal with Goliath and its new growth.  The plan is for me to go through a six week proton radiation therapy treatment.

After getting over the initial frustration of my last MRI and the reality that this battle is most likely going to be an ongoing issue I realized that, despite the growth, I am the victorious one in this battle.  Aside from 100% complete surgical resection of the tumor, science does not have a known cure for my brain tumor.  Thus, when faced with an incurable tumor, the only option (outside of a miraculous healing from God) is to  live long enough for science to develop a cure.  Back in 2011, proton therapy was not available in Seattle only photon (X-Ray) radiation was.  The difference between the two is that proton rays cause less unintended exposure to radiation.  They both have an entry dose of radiation, but proton rays do not have an exit dose. Granted with the older methods of photon therapy they would try to limit the radiation exposure, but essentially you are left with a varying amount of low dose radiation exposure to areas that are not the tumor. proton

When thinking about my brain, the idea of low dose radiation floating around in my brain was not something that I was willing to risk.  However with proton therapy the idea is that I will spare the rest of my brain from radiation affects.  I was against radiation 4 years ago due to the collateral damage, however, I am OK with the risk associated with the new technology.  Granted they can only prove that they can keep the tumor from growing, but they can’t prove that it will extend my life.

The process of getting my brain mapped and the target paths designed takes a few weeks to get ready.  That coupled with the fact that my insurance company needs time for pre-approval and the holidays it meant that I was looking at a February start date at the earliest.  However, for my line of work, that is a horrible time to go into treatment.  Knowing my own inability to rest and that I am not good at slowing down I have decided to begin treatment on April 18th. I will get the joy of a tax season followed directly by the joys of proton radiation!  What a great start to 2016!!  I will say that I am at peace with the whole thing and have done my homework and feel this is the best strategy for me.

And Yes I will be still doing my big Issaquah Alps traverse run/trek!  People have asked me if that was still going to happen.  Of course it will!  Again, I really don’t know how to rest!

DG

DEH

 

Goliath Strikes Back

December 6, 2015

This past week was my MRI update day.  Currently I have an MRI every 6 months to check on Goliath.  For the past several years, its been an uneventful day.  At this point I have had so many MRIs the past 4 years, I actually find my time in the machine to be relaxing and peaceful.  If you have not had an MRI before, you are loaded into a machine that looks like a tube.  The original machine at UW is tight, meaning that basically my shoulders span the length of the opening and I can fill the sides of the machine. Since my first scan, they have added 2 machines that are bigger and provide more space  They place a cage over your face, give you a panic button and slide you in.  For anyone that is sort of claustrophobic, this would be torture!  During the scan the machine makes these terribly loud clicking sounds.  For most people its a very unpleasant experience.  I have actually started to find my time in the tube to be relaxing and peaceful.  You are able to listen to music during the scan.  My choice has always been Jack Johnson.  I also have to have an IV drawn as during my scan they will inject contrast in me that helps to show any areas of tissue growth on the scan results. I was cracking up on this visit as for the first time in 4 years, I realized that the waiting chairs, where you wait to have an IV or wait to get called into the machine, actually have butt heaters in them!  I laughed as for the most part I have felt that I was an “expert” at the MRI process.

I actually sent out a tweet about it.  My MRI was on a Thursday, which in the brain tumor community on Twitter is considered #braintumorthursday.  Twitter actually has been an important part of my cancer battle. I have been able to locate other brain cancer warriors and have been able to use it to locate other bloggers and during long sleepless nights when I was on chemo, I was given encouragement from random people whom I have never met.  It was a great lifeline in the middle of the night when your support group is asleep and you are feeling awful, awake, and discouraged. Some props from some random folks on Twitter are a great pick me up.

After my MRI, I met with me Oncologist.  On most visits I have to ask him to pull up my scans and go over them.  However last week, he immediately opened up the results and started going over them with me.  Not a good sign!  I quickly learned that Goliath is on the move again.  Although the MRI tech who actually reviews the scan before it moves to my Dr.  rated the results “stable”  which is what every brain tumor patient wants to hear.  That was when looking at my last couple of scans.  However when you go back to 2013, the growth is pretty obvious.  It’s there and visible for even the untrained MRI reader.

It was a gut shot to me for sure.  After I was finished with my Dr.  I went up to the lab room and requested a disk of my scan.  I have a copy  of every MRI I have ever had.  While I was waiting for them to make my copy I sat in a lobby area of the hospital and made my phone calls. While doing that I sent out another tweet.  It said the following:  “It’s #braintumorthursday, MRI day and the day I learned that I am not superman anymore”.

In terms of my next steps, my oncologist will be putting together a plan for treatment and will follow up with me next week.  Basically, the time from MRI to appointment is only about an hour, thus not enough time to do the research, get collaboration, and put together a game plan.  However it will involve recommendations of more chemo, radiation, or maybe both.  I will be going back into some type of treatment.

Since I was diagnosed and Defeat Goliath was born I honestly have believed completely and without a doubt that I am the exception to the brain cancer world.  The stats are grim across that board.  Most people do not live to die of old age when diagnosed with brain cancer.  It’s a reality and a fact.  However during this process I have truly thought that I was impervious, invincible, and superhuman.  Goliath would have no control over me.  Granted I am well aware of the reality of this disease, I have read about it in other warrior’s blogs.  I have even blogged about the crushing reality of losing people to it whom I have met along this journey.  I also know that in almost every person I have talked to, read about, the reality is that the tumor will also come back.  The battle is not a one and done affair, its a battle that features many wars and many battlefronts.  However the tumor always comes back…  Yet, if you were to ask me if I was different, I would say yes I am!  Without a doubt, I am the person who will be one and done.  I will be the person who will beat this thing down.  One day I will be able to proclaim “I fought my enemy and smelled his ruin.”  Yes that is me.  Defeat Goliath is bigger than the tumor.

I think over the past several years I have lived this out.  I don’t think that anyone who has met me, who didn’t know about my tumor, would have even guessed that I had been through something like that.  From my professional world, to my world of hobbies, the tumor was a simple blip on the screen, a non-issue.  My life was on track as if my surgery and a year of chemo had never occurred.

To clarify a common question that people have, I have never been in remission.  I will never reach remission because the tumor cannot be completely removed. It will always be present.  A part of it will always be with me.  Like a volcano, I will experience periods in which the tumor is dormant, however currently, modern medicine is not able to cure me.

That has been the challenging part. The growth tells a story that I am not completely superman. I will not be one and done.  Its going to be a battle.  I had an ideal of what being the “exception” would be like and that plan has been erased.  Hence, now I learned that I am not Superman.  It’s been a difficult hurdle for me to mentally jump over.  I am not invincible. The thought that maybe I am not the exception, I am not different.  I am a stat just like tons of other people.  I am not the outlier, but I am on the standard curve.  It’s a hard pill to swallow.    Honestly it’s difficult to put these feeling into words, but part of my way of coping with this entire process is leaning on that hope, leaning on that perceived reality that Goliath has zero hold over me, that I will crush this thing, but once again reality has crushed perception.

Thursday night we sat down with Colby and Cade, and Jessica and I told them about the results and the next steps.  We asked if they had any questions or were worried about anything.  They both looked at me and said “nope”.  I then asked if they understand what this means.  “Yes we do, you have already been through this before and got through it, we know that you can do it again.  You are our Dad”.  Ok enough said its time to not worry about things, they still think I am superman, which is good enough for me.

imgsvrU393ZG6V

It’s time for round two…

DEH

DG

 

Self Doubt to PMA

November 8, 2015

It’s been a while since my last post, mainly I have just been busy.  Jess and I went to Europe for 2 weeks in August and had an amazing time hiking and climbing in the Alps.  Plus a few days on the French Riviera.  We went with some good friends.  (I voted for more mountains, but Jess overruled me, so we swam in the Mediterranean Sea). Then once we got back I was busy with work (things just seem to keep getting busier and busier) and then back into coaching as I was an assistant with Colby’s tackle football team and then Cade’s head coach for flag football.   September and October were a little bit packed to say the least!

2015-08-12 09.41.47

Helicopter flyby near the summit of Monte Rosa

Tucul

 Cruising on du Tacul

2015-08-15 06.50.11

Our view from our place in Villefranche-sur-Mer

A quick recap of Europe:  It was amazing!  We had such a blast, it was a worthy bucket list trip for sure.  I was able to set my altitude high point, post surgery, at 15,200 ft at the top of Monte Rosa – the highest mountain in Switzerland.  And I felt great doing it.  Unfortunately, the weather ruled out the Matterhorn (there was a descent snow storm that hit up high in the mountains, we got soaked in the valley below), but Monte Rosa was a great alternative.  The other climbing goal was Mont Blanc, but poor conditions up high on the glacier and some lost luggage (our bags with our climbing gear got lost and took 3 days to get to us, which was not in time to keep our scheduled hut reservation) did in that option, but we cruised to 13,000ft on Mont Blanc du Tacul – which was amazing on its own.  We hiked just about every day and then enjoyed great food, fondue, beer and wine.  In the Riviera, we swam in the warm salt waters of the Mediterranean Sea, then rented a small boat and cruised around for a day on the water.  I actually enjoyed the relaxation of the beach way more than I ever thought I would have.  Overall the hiking and scenery was spectacular.  The Alps are great!  With the trains and lifts, you can hike up steep things and then take a ride back down to avoid the downhill pounding on your body.  Its the only way to go.

Here are some links to some video clips of the climbing:

Monte Rosa

https://www.youtube.com/watch?v=d0IQRKXoK1Q

du Tacul

https://www.youtube.com/watch?v=ONiPL8X2CKg

(Tons of picture rolled through Facebook, thus you can look there to see them if you wish.  If we aren’t connected, just send me a request.)

Despite the success of my new post tumor altitude high point and the fun of Europe, upon return, I still find myself dealing with some self-doubt.  Really I think its brain cancer related.  In 2011, I was 34 years-old.  I was physically fit and strong.  I had spent 2007-2009 being pretty serious about adventure racing.  I was on a team that received sponsorship money to race.  I was at my peak in terms of fitness.  Granted in 2010 and early 2011, through hindsight, I was experiencing the negative impacts of the tumor, that did erode some of my physical and mental attributes.  However I would have never known, had it not been for the seizure.  Since surgery and chemotherapy, I have not been able to reach my prior fitness levels I experienced before.  Yes I have done some pretty cool things, but I have not reached close to my peak.  Granted I am older now, however I think age is one of those things that only other people see.  We never like to admit that we are older, a little bit slower, a little bit diminished.  For me everything happened so fast.  I went from one day being 34 and strong, with no health concerns, to the next finding out that I need brain surgery and I have a massive tumor in my brain.  Plus I have also been on constant medication since my first seizure.  All of this plays a role, but it’s hard to understand what caused what.

Self-Doubt creeps in… will I ever feel as I did prior to Goliath?  Can my fitness level return?  Can I get back to my pre-tumor weight?  How much of an issue will the subtle stuttering that I have developed since Goliath be?  What else will I discover around the corner? Will it cause a new issue in me?  I am forever diminished from the person I once was?

A few weeks ago I had a few open hours, so after church, I rode over to Grand Ridge on my bike and rode about 20 miles that day.  As I was cruising up some rolling hills, a biker past me, he was moving pretty good.  As he went by, he provided me with some tips.  I probably should have been thankful as I think he really was trying to be helpful, however my first thought was what kind of rider have I turned into?  I used think I was a beast on a bike, especially when climbing up steep things.  However now I am thinking, man I must just be a shell of my former self.  I must look like the clueless weekend warrior dude, that doesn’t have a clue!  Why else would someone dole out tips to me. My how the mighty have fallen.  That is self-doubt smacking you right in the face.  I used to be the guy who was giving the advice!

As I finished my ride, I came up with this poem:

I Used to Be…

I used to be stronger

I used to be lighter

I used to be faster

I used to be younger

I used to be more desirable

I used to be better looking

I used to be just flat out better

Now I am just a shell of my former self

Will I return, will I breakout?

Only time will tell

But in the end, I can’t let the tumor win

I must move forward, I must press on

Because I used to be, it proves I can be so once again.

I am a basically 4 years out and still battling with the self-doubt that this tumor has caused.  But my only recourse is to press on and move past the doubt. I am living with a dormant volcano in my head, yes at times it can be a little bit freaky. I know I have written lots about being positive, pushing through and battling back.  But I will be honest, it’s not always as easy as it seems… But something I must press on with…

Thinking about the self-doubt I feel, brings me back to PMA.  Positive mental attitude.  You have to believe in yourself in order to achieve.  PMA was a lesson that my Dad brought home to me many years again, when I was in a low point.  He posted notes to me for several days, They focused on the mental aspect of things and winning the mental battle in life.  Sometimes in life we hit a road block and it causes us to mentally spiral downward.  Goliath has presented this challenge to me in a lot of ways.  Even 4 years later, it still causes self-doubt.  Doubt at a time when I have been experiencing some awesome highs, since surgery.  So now I press on.  Today marks 4 years since my seizure at the U-Village Starbucks and I am still here and healthy.  Goliath has been kept at bay (stable MRI’s) and I am back doing many of the things I love at a high level, it should be time to celebrate.  It’s time for me to let the PMA conquer the self-doubt.  Its time to move from self-doubt to PMA.  To push myself, I have thrown down a challenge this February, last year I ran a 50K ultra-marathon, this year I couldn’t find a race that worked, so I am going to do the Issaquah Alps traverse – Cougar, Squak, and Tiger Mountains.  Traverse over all three in one push.  I have actually done it before, however its been quite awhile.  That time I went the shortest official route, this time I am going to summit all major high points on all three mountains.  It should be epic.  My hope is that it will keep me motivated and pushing towards PMA and won’t allow me to wallow in self-doubt and pity.

DEH

DG

Coaching: Lessons Learned

June 2, 2015

I think for most kids, at some point, they dream of playing professional sports. I know I did as a kid. My dream ended with surgery after a miserable year of baseball playing for a small college. I think lots of parents have that dream for their kids as well. However, the reality is that your son or daughter is probably not going pro. The stats are pretty grim. From high school to the pros here are the stats on high school athletes going pro: Football:.09%, Baseball .5% Basketball .03%, Soccer .08%. Not very good at all. (notice baseball seems like the best option, but that is going pro – which includes the minor leagues). However that will not deter many parents from pushing their kids to the brink through youth sports. Although I do believe that you should always allow your kids to dream of going pro. I admit it’s a pretty awesome day dream!

I had no idea the amount of select teams, travel teams and opportunities to keep your kids in sports all year-long. And no I am not one of those parents that thinks each child needs to be in a select league. I think that too much too soon can lead to burnout and overexposure for a child. I believe that kids just need to be super active, having fun, getting exercise and that will help them to develop the skills they need to excel in sports, which can be going to the park with their friends and playing pick-up games. For my boys, they will have the chance to join a select team once they are really old enough to make the decision and are prepared to put in the time that is required. At this point neither of them are there yet. I am also a big fan of doing multiple sports. I know as a parent I love the changing seasons and the excitement that each new sports season brings. I think I would be bored to have my kids in just one sport all year round.

Granted we are a big sports household and both our boys are constantly going from one sport season to the next. Thus I am not different than anyone else for that matter. We all want what’s best for our kids. Which we all should strive for as parents. We want them to succeed in everything they do, which includes sports. The barrage of sports has led to my involvement in coaching. My first adventure in coaching started early. Jessica and I were on a walk with Colby in a stroller he wasn’t very old. We were walking by a park where a baseball team was practicing. I stopped and was watching the team practice. The coach broke out his players into various drills and was teaching some techniques that were totally wrong. I watched in shock and wanted to jump in and tell the coach that what he was teaching was totally incorrect. Jess wisely stopped me from saying anything. My feeling became that I had to volunteer to coach since I didn’t want someone teaching my kids bad technique. If anyone was going to teach them bad technique, it would be me. Since that day, I have been involved with football – flag and tackle, baseball, and wrestling.

Through the process of writing this blog over the years, I have realized that some of the people who have had some of the greatest lasting impacts on me were coaches that I had during high school and competing in youth sports. I still repeat things that I learned to my kids. “Can’t aint a word”, “Winning takes care of itself”, “Put the hay in the barn”. I model lots of what I do as a coach after what I learned. Heck for flag football, the basis of my playbook is the ISO series that Gene Yerabek brought to Tolt/Cedarcrest High Schools. That series of plays led to a couple of undefeated flag football teams. My time spent playing sports has shaped the way I respond to life and for sure how I approach coaching. Over the past several years, I think I have learned several things from coaching.

I would like to think that I do an OK job working with kids, but I am sure that there are some that didn’t like my approach, or were offended by how I handled something with their child. I think that its probably impossible to coach and not have some type of issue like that. I am also sure that I have some other coaches that I am on their top list of coaches whom they would like to beat. Most likely for something I did against their team. But that is part of the job. You are not going to please everyone…

Here are some of the things that I have learned and the philosophy I try to use when I am coaching.

1. Have Fun: That is the most important part of sports, to have fun. I typically think the kids always do a great job at this, but parents are the ones who typically ruin this for the kids. My goal each year is that every kid I coach will be excited for each practice and game and will want to play the sport the following year. If every kid I coach wants to play again the following year, then my main job is done.

2. Teach technique that lasts: This is a huge one. I think baseball is the biggest offender. Coaches will take a kid that is struggling at the plate and have them fake bunt or take pitches, hoping they walk. That might work as they are young. But the reality is that they need to learn to hit the ball or they will never get better. Sloppy technique can work in lower leagues, but stops working as kids get older. I would rather watch one of my boys fail with good technique than get lucky with poor technique.

3. Try to put kids in a position to succeed: Typically I spend a fair amount of time, trying to figure out the best place for each kid to play. With the goal being to allow each kid the opportunity to succeed. Often times in youth sports, I think kids are either not given the chance to succeed or are put in a very difficult spot to succeed. For example, in baseball, if you are working in a new pitcher, don’t bring him late in the game with runners on, have him start an inning so that the pressure is less. If you help a kid to succeed it builds their confidence, which is huge and can last a season.

4. Structure, but still fun: I would not consider myself a “yeller” when I coach, but I do try to set the tone early with rules about paying attention and following the rules. I put in ways to get the kid’s attention quickly and then teach them to focus in when I need them to. I don’t like it when the kids are goofing off too much. Setting the early tone is huge, if you give them an inch, they will take a mile. But at the same time you can’t be all structure, you need to let them have some fun.

5. Everyone needs encouragement: Encouragement feels good and helps keeps kids motivated. I try to give kids that high five or nice comment to keep their heads up and them being positive. Some parents are not fond of coaches that are considered “hard” or who are yellers, but my take is that a coach can be hard on his/her players, if they provide the corresponding love and encouragement. The player needs to feel supported by their coach, even if they are tough on them.

6. Each kid is unique: It’s true, I don’t treat each kid equally. I do try to provide equal opportunity, but I try to treat each kid based upon their unique personality. The same things do not work on each kid, so I try to figure out how to work with each kid on their terms, so they will listen and be receptive to what I am saying. When I am working with Colby and Cade, I treat them completely different because they each have very different personalities.

7. Winning takes care of itself: This is one that I took from Ralph Kuehn, my high school wrestling coach – his brother Art would also say the same thing. Sometimes the more we worry about winning the more difficult it becomes. It is when we focus on playing hard and our best that typically winning will happen. In my opinion there is nothing worse then watching a kid end up in tears after a strikeout or lost game. There are too many other things in life to cry about. Youth sports should not be one of them. If someone asks me the score, my response is always zero to zero. If I am asked who we are playing, my response is always the best team in the league. About halfway through the season the kids stop asking me those questions.

8. It’s always about the kids: In the end, youth sports are all about the kids, not the parents. Sometimes as parents we forget that.

9. Coaching your kids is not always easy: The truth is that I am harder on my kids than anyone else. I expect more from them and come down harder on them when they make a mistake than other players. This is something that is still a work in process for me as it is a super hard thing not to do. I remember talks with my Dad about this. He coached me when I was young and then coached Keri as we got older. When I asked about that, he said that he thought that boys sports became way too political and didn’t want that to negatively impact me, thus he worked with Keri as at that time, girls sports didn’t have quite the same political fireworks. However, he was always the first person I went to after games for advice.

10. Ask for something and you get the opposite: Kids will always ask if they can leadoff, get the hand-off called to them or be first for anything. My rule is that if you ask to be first, you will then be last. I have all of my line-ups pre-set before the game, thus I don’t honor in game requests. I think the moment you give in to a request, then you are setting yourself up to let the kids run the show.

Granted I am not the perfect coach by an means, but I try to do the right thing. I am sure that I have also failed at some of the items I just listed many times. But like the kids, I am constantly learning and growing too. As much as I would like to think I try to leave the ultra competitive side of me at home. Because really the more important goal then winning is to develop the kids skills. However, I have succumb to the desire to win. I have to admit this was not my finest moment as a coach and some would probably not worry about this for more than a second, but it still bugs me that I have let winning drive the bus. I also crossed one of the cardinal rules of coaching your own son. Don’t bench another kid to put yours in the limelight. It was flag football play-offs, I was coaching Cade. His team had gone through the regular season undefeated. We found ourselves down by 4 with about 2 minutes to go, thus this was our final drive. Without hesitation, I subbed in Cade and put him at QB, putting a kid on the bench who should have played that whole half. I called the next play to one of the best players on the team and he ran the ball down to the 2 yard line. Basically the game came down to one play, if we get a TD, we win and advance to the next week, if we lose, our season ends. I won’t go through the rules of flag football, but on this one play, we were required to pass, thus no two yard run to end-zone and victory. (yes think the Seahawks in the Super Bowl, but you can’t call a running play.) Thus my sub to Cade came into play, he tossed the winning pass on the final play of the game. Game over. We won and then advanced to the next week. I still feel guilty about that series. I think as a coach that was the one time, that I threw out everything and just did what I needed to do to win the game. It was not my finest moment. It still bugs me.

Nope I am not perfect. I do my best and try as much as I can to adhere to the items I listed above, but I do know that I am not banking on my kids going pro. I want them to have fun, learn some life skills, learn success, learn failure, be active and as I repeat have fun. And I do know that I have a blast coaching and plan on doing it as long as I can…or as long as my boys will allow me to.

Cade

colby

DG
DEH

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