Jul 312016
 

Last weekend was derailed by my poor planning so we made sure to make it out this week.  This should have been called the All Slug Challenge as there were so many slugs and snails on the trail you had to watch closely where you stepped to avoid them.  We should have been counting slugs instead of dogs this whole time it would probably have been more interesting.

Again, we went out to Germantown road but this time we went on the north side.  I had never been to the north of Germantown so most of this walk was new.  It was very peaceful and an absolutely perfect morning.  I think this was the first hike where it was a sunny day.  Most mornings, thankfully, have been overcast and cool.  In fear of it getting really hot like the last two days we wanted to get out early and beat some of that heat.  Fortunately most hiking in Forest Park is shaded so it is never too hot.  The trail head was packed indicating how popular this area is.  The nice thing about the park is the size.  It is so huge you never see that many people.  Especially in the more remote areas.

Because of the All Trails Challenge we often do quick little out and backs to hit the lesser used trails.  We have to hit ALL the trails so we end up backtracking a bit.  This time we had a very short but steep out and back on Firelane 8.  This was slug paradise.  They were everywhere and they were huge.  I have a couple of pictures below.  The one on the tree was massive.  I did not put my foot up there for scale but he was bigger than the one by my foot in the first picture.

We continued along Wildwood until the intersection of Firelane 10.  Headed down Firelane 10, with a little diversion on Keyser Trail, until we got back to Germantown road.  Did a quick crossing and up Cannon Trail back to the car.  It was a relatively short hike but we had lots to get done today and thought this would be a nice quick section to knock out.  I think we can wrap this area up with two LONG hikes in the coming weeks.

In the pictures below I had my first opportunities to take some shots with the sun dappled light creating some nice shadows; highlighting what I love about this park.  I mean, seriously, where can you find such and awesome place right in the city?  We have green all round us year round with these amazing trails.  Each hike I wonder, who the heck made all these trails? (the photo of the Bruno Kolkowski memorial bench got me thinking about that this time) How and why was Forest Park even created?  Who had the forethought to set this in place so many years ago.  I never think of people from the 1800’s and early 1900’s as “nature lovers” or “environmentalists”.  I always thought of them as “exploit the environment and bend to the will of man” types.  Clearly I am wrong in that perception thanks to a few individuals that took it upon themselves to save areas for future use.  Look at the national parks as an example.  This curiosity about Forest Park has lead me to do a little research on the net.  I have found some books and have them reserved at the library.  As I find out new and interesting tidbits I will try and include them on these posts.  Forest park is something special in Portland and seeing how this is a fundraiser for the Forest Park Conservancy so think about a donation if you have the means and interest -> DonateHere

In my preliminary research I found this article from the Oregon Encyclopedia on Forest Park -> Link

I wanted to highlight one point with an excerpt below:

The first person to recommend that the forested hills be made into a park was landscape architect John L. Olmsted, who developed a citywide plan for Portland in 1903 in conjunction with the upcoming 1905 Lewis and Clark Exposition. Olmsted, stepson of the famed landscape architect Frederick Law Olmsted, strongly recommended that the “romantic wooded hillsides” be preserved as parkland, saying, “It is true that some people look upon such woods merely as a troublesome encumbrance standing in the way of more profitable use, but future generations will not feel so and will bless the men who were wise enough to get such woods preserved.”

Looking back at what the Olmsted family did for this country and the amount of amazing parks and public spaces they had a hand in creating is stunning.  All over this country in many major cities you can see their work; most done over 100 years ago.  It would be interesting to talk to them about it now. Forest Park park is a great reminder of what makes Portland such a special place.  It is the largest forested natural area in any city in the United States.  BUT just because we have this amazing Forest Park, don’t move to Portland.  We are getting to big for our infrastructure.  Instead find an amazing place where you currently live and help make it great.  I found a reference to a website (The Trust for Public Land) that ranks cities based on their public parks.  What a fantastic resource -> ClickHere for the list. Portland is only ranked #6, Minneapolis is #1, St Paul #2 so move there.  I hear it is beautiful in the winter, ay.

Here are a few more links about the park:

  • Great info on the park here -> Link
  • From the Forest Park Conservancy Page -> Link

In the pictures this week I love the random small flowers and the hints of development in the park of times past.  You can see where roads were, old water pipes, street lights, that ancient crumbling infrastructure from the turn of the century.  Fun to see odd/random man made stuff in the middle of this forest.  Also, I want to note, it is good to look up once in a while.  The tree canopy with a blue sky in the background and sunlight making the leaves glow bright green is often overlooked.  Plus, you can see all the moss on the trees, watch them sway in the wind, maybe see a critter or two.  Such a different perspective from the endless vertical trees looking ahead or the winding of the brown dusty trail (or the slugs on the ground).

Looks like we got about three trail miles.  Add a little section on the road to cross over, that is ballpark a tenth of a mile, and that puts us (according to map numbers) at 3.18 miles or so.

7/30/2016

my iPhone tracking -> http://cyclemeter.com/e270d94f4da916b7/Walk-20160730-0922

Day 6 – 1.5 hours and iPhone said 3.00 miles.  I calculated 3.18 on the map so we will go with that.

Total – 27.17 of our now guestimated 100 miles so 27.17%

Total Dog Count: 4 more so now we are at 34

Total Time: 11 hours 32 minutes



 

Jul 302016
 

On Monday I went back to work for the first time since the end of May.  I am now working part time in the morning then going to treatments in the afternoon.  It has been bittersweet going back to work as I feel like I have had a “taste” of retirement.  Monday morning as we pulled out of the garage and drove away from the house there was a bit of longing to stay home.  I always knew I would be going back to work and I enjoy my work but still it is really nice to just be at home puttering around.  I am really good at that.

Working just 4 hours a day is really hard.  The day goes so fast.  All it takes is one or two meetings and your day is just wiped out.  Plus, I have to change the structure of my work day now.  Monday just whooshed by and I was able to hit the gym before my treatment.  The goal is 4 hours of work in the morning, an hour of gym time, then off to get my brain zapped.  Mondays workout was quite the eye opener revealing just how much fitness I have lost.  I wanted to take it easy and did but boy there is a long way ahead.

A few weeks back we met with the Palliative care group at OHSU.  Their goal is to help you be comfortable throughout your treatment.  One of the questions I had was how to workout while undergoing treatment.  With any kind of training you are essentially breaking down your muscle in hope that your body repairs them thus making you stronger or more fit.  I was not sure what I should/should not do while taking a drug that inhibits cellular repair.  I was given a referral to see an Oncological <sp> Physical Therapist but she is so popular I could not get in until September.  Monday I got the call she had a cancellation so I went to see her on Tuesday.  Wow, so happy I did.  She said this is not going to be like typical PT for a knee where you see them for 6 weeks and you are done.  This will be a long term thing as I am dealing with a neurological issue and trauma to the brain that affects your entire body. They approach this as a complete system.  Your nervous system is tied into everything and does not turn off.  Plus it is sorta freaked out from the surgery, the swelling, the radiation, basically everything going on in the brain.  The eventual goal is to teach me ways to calm it down and reset it.  She talked about something called Neuro-Glides and Qigong so I will learn more about those on my next visits.

The good news is she wants me to do strength training but to listen to my body.  Don’t push as hard as I did in the past.  Maybe not multiple sets but one set and to get 10 good reps.  If I can do more than 10 my weight is too low and to increase.  AND it is going to take me a couple days to recover and expect that.

The other good news is she got me in with another PT that specializes in vestibular issues.  While I still do not have an actual diagnosis as to what caused my vertigo, it is generally accepted it is something related to my inner ear/8th nerve causing my balance and dizziness issues.  Looks like I will have to retrain the signalling system in my body to compensate as we have no ideal if/when it will heal.  I still have a week before I see him.

So, back at work and VERY glad to be able to return to work (they have been great throughout this whole ordeal and I really appreciate that).  Back to the gym and have a long road ahead.  Back to a little bit of normalcy and that is probably the best thing for me.

Jul 242016
 

Well it is another of those – bing wide awake mornings.  With this Ketogenic Diet and all the drugs constipation is a constant concern so one of the ways to battle that little problem is to drink an enormous volume of water.  From the time I wake up I literally pee every hour on the hour so it is almost impossible to make it through the night without having to make a trip to the restroom.  This often results in me wanting more water so a trip to the kitchen for yet another glass and the cycle resumes.  Because of my late night wanderings, and all ambient light, I am left more awake than sleepy and thus toss and turn once I have returned to the bed.  Tonight (well this morning really) was even worse as I was really mad at myself and I could not let it go.  Now I have fodder for another post.

Last night we went to Portland Brewing for the weekly Geeks Who Drink trivia night.  It is held there every Saturday at 7pm.  Portland Brewing will also do something pretty cool and will allow fundraising events where they will donate portions of the bill to some worthy cause.  Last night was a fundraiser for the National Brain Tumor Society and seeing how I have a brain tumor Jessie thought we should go.  (and to be honest we like beer, even though I cannot drink we feel pretty at home in a brewery and I miss them)

Jeff, Jessie, Frank, and myself went as representatives of Team Food Baby.  The host did a good job mentioning this was a fundraiser in conjunction with the standard trivia night.  There was a representative from the National Brain Tumor Society (NBTS) and she said a few words, gave some facts and figures, and we started in with the trivia.  Once the game ended and the waitress came by with the bill Jessie mentioned something to the waitress about the fundraiser.  The waitress said I am glad you mentioned that as we need the customer to say something to apply the donation to the charity.  I thought seeing how this was a “fundraiser” that all that would have been arranged in advance so I went and asked the rep from the NBTS if we had to specifically say something to the staff.  She said that was a good point and would say something about it to the group.

The whole time I was there I did not see anyone that appeared to be there due to a brain tumor and felt like I should say something.  This is part of my general struggle with my situation.  Do I get involved? How much? To what level? And why? I am sort of a private person and like to keep things to myself and not be a martyr or a hey look at me I have this horrible thing and I want to make you look at it and make you uncomfortable because of it and guilt you into doing something you don’t want to do because of me and my thing.  I never liked it when others did that to me.  Frank said something to me this week as I expressed my confliction about my situation and he said, in general, if you are not part of the solution you are part of the problem.  I felt compelled to stand up last night and help drive the point home that Brain Tumor suck and they can happen to anyone and implore those people to help out by tossing a few bucks into the kitty.  Did I do it? Nope and that is what bothers me.  Why didn’t I?

And that is why I was tossing and turning all morning.  I am not shy; I don’t have a problem talking in front of a bunch of people.  I have a good story to tell so why didn’t get up and say something.  I am sure we could have gotten a few bucks more.  Brain tumors are so rare and the numbers pretty low they did not get much attention a few years ago thus research is way behind.  I had an opportunity to help out and I did not take it.  I consider myself very lucky as I have not been debilitated (yet) from this disease and many people are.  I need to take advantage of my good fortune while I can and do what I can.  I will not make that mistake again and will work hard to be an active participant in this fight to find a cure.

It’s good to have a cause right?

So, those of you that are seeing this on facebook, can you do what a couple of my friends did and share in your feed, the link our team page, and say: Hey a friend of mine is in a shitty situation and there needs to be more research into brain tumors.  Cut into Starbucks (or Budweiser or Coors it’s shitty beer anyway) profit and skip that coffee (beer) this week and send some cash to fund brain tumor research.  You might just make a difference.

http://www.braintumorcommunity.org/site/TR/TeamraiserEvents/PortlandBrainTumorWalk?pg=team&fr_id=2735&team_id=78344

Thanks!!

Jul 232016
 

When the weekend hits we are off to the NW corner of Forest Park.  There are so many trails out there and it takes a bit longer to get to so it is nice to have the extra time to drive out that way for a hike.  We headed to the trailhead just across from Skyline Tavern.  The only problem is, there is no parking up there except for the Tavern parking lot and it is plastered with no parking signs. We decided not to risk it even though it was early on a Sunday morning.  We drove down German Town road to start at the bottom and work our way to the top and back.  Again it was a nice overcast day so it was perfect hiking temperature.  It sure would be nice if the summer was like this, nice cool mornings and warm afternoons.  We started up Tolinda Trail to Waterline Trail, did a quick out and back on Wildwood (North) to knock out that section then up Waterline and back to finish it off.  Once back to the Wildwood intersection we headed south to tie back into Springville road and completed the portion we started back on July 4th.  All the way down to the St Johns bridge road then back our trail head off Germantown road.

All in all a nice day and quite a few people given the remoteness.  But then with all the trailheads off Germantown it makes sense.  Oh and it happened to be STP weekend (that is the Seattle to Portland bike ride) so we got to see a few TIRED cyclists rolling into town.  Not that many interesting photo opportunities this time around.

my iPhone tracking -> http://cyclemeter.com/e270d94f4da916b7/Walk-20160717-0904?v=1

Day 5 – 2.5 hours and iPhone said 5.78 miles.  I calculated 6.2 on the map so we will go with that.

Total – 23.99 of our now guestimated 100 miles so 23.99%

Total Dog Count: 10 more so now we are at 30

Total Time: 10 hours 2 minutes

Jul 222016
 

So yesterday was my first post in a while and I think it opened the flood gates.  I laid in bed thinking and writing in my head where everything sounds much better than when I actually sit and write it down.  Amazing how I can compose an entire book, memo, narrative, in my head but when I actually go to write it down and can barely remember a thing.  Honestly I bet I could be a fantastic writer if I did not have to do the actual physical writing and could just transcribe from my thoughts.  At least it seems pretty good while lying awake at night.

Then first thing when I woke up this morning I thought about Lance Armstrong and his testicular cancer.  Well, not exactly that but my train of thought took me there pretty quickly.  I think the steroids have made me pretty wired and sleeping is difficult now.  Plus once my thoughts get going and a noise distracts me I cannot stop.  The sprinklers were going and I could hear them so of course I fixated on them and could not block them out and then I started thinking and writing in my head and off I went, toss and turn and write for a couple of sleepless hours.  The big debate is should I just get up and write or should I fight it and try and get back to sleep.  I know I need the sleep and rest etc but when you are wide awake you cannot help it.

I am going to digress a minute because I want to explain something.  I sort have a lot to say and as I laid in bed I thought about lots of stuff and it would cause this to be an EPIC post.  So big I was thinking it would not fit on Facebook.  There had to be a limit to how much they would let you post.  I will try my best to break this up and cover the subjects I was thinking about because it will be much easier to digest and I don’t think I have time to sit and write it all out this morning.  Plus it was really good stuff in my head.  Once I mull it over it is probably fluffy drivel that I find so annoying on the internet.  Also, that is why I struggle a bit putting my thoughts into tangible words.  Do I really care to do this, do other people really care what I have to say just because I have a life changing disease.  There are lots of people that are going through what I am how am I any better, different, meaningful.  I mean, who really gives a shit what I have to say.  Maybe I should have gotten that philosophy minor in college but then who cares does it actually make a difference in anything.  No idea but I think it may help me sort some things out.  I spend WAY to much time on the internet but I cannot help it.  I am a curious person and like to learn.  Much of what I have read is the cathartic effects of writing.  I should just put this in a personal journal or something like that but then I would not get the Facebook accolades we so desire.  I think that is why I like the blog site a bit more.  I can just put it out there and it is what it is.  No FB feedback.

Now for a double digression to get to the point of what I started in the previous paragraph, my mind is like a butterfly, it just flits about taking me where ever it seems to go.  That is my life these days and my new life motto I guess.  Accomplishing a task is a herculean effort anymore.  I start something with the clear goal of completing it and the next thing I know I have learned how to build a mud hut on the island of Ibadu that is made from spit and bark of the Babunga tree.  Seriously I will have no idea how I got there nor what I was trying to do in the first place.  (That will lead to another post about Internet time and the exponential time suck).  There is so much going on inside my head anymore staying on task is practically impossible.  So, I am just a butterfly now.  Honestly I want to find a researcher and get them to name a new species of butterfly Digression.  Actually Surreal Digression, as most of my life seems so surreal anymore.  Surrealus Digressus would be a great name.

OK I could ramble along all day with this BS but I have to get back to the main topic here.  I will save my musings for other posts so I can be one of those other bloggers with a life changing disease that makes me philosophical thus have important things to say.

I have been watching the Tour de France and I think that made me think about Lance this morning.  Now he was not the first thing I thought of when I woke up.  It was really the results of my blood test from yesterday.  Each week they draw blood to check my levels and see if everything is hunky dory while under chemo treatment.  Yesterday I felt a bit weird as I was fairly light headed, a bit more dizzy than normal.  My feet would get sort of numb when I sat, if I got up quick I would get lite headed.  My calves have funny sensations.  What do you do when you have odd symptoms?  You go to the internet of course.   I start researching restless leg syndrome to see if maybe something like that is happening.  The steroids have really improved the muscle tics but my right calf still seems to be funky.  Of course that has me worried a bit as GBM’s make you more susceptible to blood clots in your legs.  I have always been pretty in-tune with my body so when something funky is going on I notice.  Plus I am now hyper aware of any abnormality.  The Doctors say that is really only a problem in sedate people and I am far from that but still when you have these weird twitches, feelings, sensations in your leg that do not seem to be going away you think about it – a lot.  When you go in for the blood draw they check your blood pressure.  I thought maybe it was too low as the symptoms I was having are similar to low blood pressure.  I have never really had low blood pressure I have always been sort of on the high side, 130/80.  Since the surgery I have been pretty normal 120/79 but the other day I was 113/seventy something.  I am rarely that low so I thought maybe it was BP.  But I was spot on at my appointment so that is not it.  That made me think of my blood this morning.  As I said my weekly blood draw is to check my blood cells and make sure they are staying in the normal range as the chemo inhibits the creation of all new cells in your body.  Blood cells are created regularly so the chemo has a big impact on them.  When I looked at my last two test results my “normal” range was on the lower side and in many cases was below the “normal” thresholds.  I could look back at my records from the days after surgery and saw I was low in most of the key areas other than white blood cells.  They were always in the good zone.  And that would make sense as I was healing from rather significant trauma.  (damn I take a long time to get to a point – sorry butterfly digression there)

So when I woke up I thought maybe my blood counts are getting low.  I have been trying to eat things that help you create blood cells but still not sure if it is making a difference or not.  That made me think of Lance.  When you get a disease there are SO many pills.  You take drugs to counter the affects of the other drugs, quite the vicious circle.  I hated taking an Advil if I had a headache and now I have a little old man pill kit loaded up with my morning pills, my afternoon chemo pills, my evening pills.  If my blood counts get low they will just give me medications to boost them.  I doubt it will be any performance enhancing drugs but you never know.  I am at the point where I am getting desensitized to all the drugs and the needle pokes and the oh you have this issue, take this drug to fix it.

The whole chemo radiation process it to try and kill/weaken the tumor cells.  The goal is to not let the treatment kill you so really you are fighting against the thing that is trying to save you from the bad thing trying to kill you in the first place.  That is a crazy thought.  So now you have this guy that is a pretty good bike racer and has some amazing potential in a situation where he is constantly getting jacked with drugs and can see how they “fix” the deficits that arise.  How can you blame him for not “using” them to “enhance” his performance.  These bike racers are amazing and some of the toughest guys out there.  Watching a guy smash into a rock wall at 30+ mph and get back on his bike and keep going is quite remarkable.  I have no idea what kind of physical torture they put themselves through.  I sure don’t have that ability inside of me.  Yah I ride my bike in circles on the weekends in the fall and make myself kinda sick doing it but it is nothing like what they do day in and day out.  Now I don’t really know all the details in the Lance Armstrong case.  It sounded like he was a real dick about a lot of it and that is why there was so much animosity against him.  I am sure he deserves it BUT he was still an amazing bike rider and I can understand a bit why the drug situation was easy for him to get into.

That was a whole lot of words to say how I thought about Lance Armstrong when I woke up but it also paints a picture of what is going on inside my head anymore.  Just a butterfly flitting about landing on random bits here and there. Plus I saved you from the epic post I created in my head that would probably be 5 times this long.  I will save some of those musings for later, if I can remember them.  They come and go pretty quickly anymore.

 

Jul 222016
 

So after our Day 3 adventure we wanted to wrap that area up.  Plus we wanted a quick and easy to get to hike and I was thinking of doing something short as I road the trainer for an hour while Jessie went to Dance Class in the morning.  We headed out at 3 in the afternoon to complete the Jay trail at the Audubon Society as we did not realized a when we were there on Wednesday that it did a full loop around the preserve.  It was a great trail and there was almost no one there.  The sun was out with a few puffy clouds and we had nice tree cover so it was still pretty cool.  When we were there the birds were away.  The center was still closed but Ruby, the local Turkey Vulture, was out.  So we got a better picture than Wednesday.   On the loop Jessie found a perfect tree to fit into and I found a nice clump to climb on (pictures below).

After completing our loop we headed across the street to Collins Sanctuary.  There are a couple of nice loop trails here with quite a few man made bridges to keep you out of the mud.  Jessie again was enamored with a tree and we found a monster slug.  This guy was a fatty (pictures below).  As we looped around and got onto Founder Trail we came into an area affectionately known as woodpecker alley.  There were some amazing trees here that had really cool patterns from the local woodpeckers looking for bugs.  Amazing to see what they can do to a tree. (pictures below)

Once we completed the Collins loop I wanted to call it done but Jessie wanted to keep going.  We had trails to hike!  Off to Upper Macleay trail and Pittock Mansion.  So up we went and it was such a beautiful day I could understand not wanting to stop.  After being in a place where we saw maybe 3 people the Wildwood trail was packed in comparison.  We diverted up the steeper Upper Macleay to bypass a large group that smelled like they were doused in perfume and would not move very fast.  Intersected with the Wildwood and continued up the hill to the parking lot at Pittock Mansion.  We then crossed the parking lot and headed down the Wildwood to the road.  We considered that good then headed up to walk the mansion grounds.

It is funny in the 11 years we have lived here we had never been to Pittock, now in less than a month we had been here twice.  It is really a magnificent place.  Do the tour once (and if you are a local you can get a pass from the library for 2 adults and 2 kids for free admission).  Then just come and visit the grounds.  They have some amazing plants and the view is stunning.  (see pictures below)

After our wonder around the mansion we headed back down and did a little loop out to one of the local neighborhoods on the Macleay trail.  That is one thing that makes Forest Park so fantastic.  There is trail access all over town and on many neighborhood streets.  I would love to have that access from my house.

Once back from our loop we tied into Wildwood and finished back at the Audubon Society parking lot where we started.

My iPhone tracking -> http://cyclemeter.com/e270d94f4da916b7/Walk-20160710-1506?v=1

Day 4 – 2 hours 45 minutes and iPhone said 5.99 miles.  I am not going to mess with trying to figure out the miles on three different areas on the mape to get a closer approximation so I am calling it at 6 miles.

Total – 17.79 of 80 miles but the backtracking issue % is jacked now.  We heard it was closer to 100 miles with backtracking so we will call it 17.79% complete (this is not scientifically complete).

Total Dog Count: 5 more so 20 (should have been counting slugs – as you can see below, Jessie wanted to get into the action)

Total Time: 7 hours and 32 minutes

Jul 222016
 

We had some great friends want to go for a hike with us so we knocked out another few miles on the all trails challenge.  Shawn, his fiance Dianne, and his daughter Hailey (she is featured below holding the salamanders).  It was actually very nice to go for a walk in the rain again.  We have had a fairly cold and cloudy July and that has been nice for the guy that is not a big fan of 80+ degree weather.  I prefer those 70 degree days.

The 5 of us met up at Lower MacLeay park and headed up the trail to the Audubon Society [audubonportland.org].  They have a nice bird hospital there where you can take injured birds to be rehabbed.  They also have a great learning center and some very nice trails.  If you go while they are open you can see several birds they have that cannot be released as they are too acclimated to humans.  Often they will have them out on display.

Lower MacLeay park is probably my most visited area in all of Forest Park as we just work down the street and it is a nice lunchtime escape.  I also spent two cold rainy days searching for one of the Cross Crusade Grail pieces in that park several years ago.  It was great fun but believe me I have looked behind every bush, structure, stream log, tree in a half mile radius.  I never found it.

The hike is great as it is a well defined trail that follows Balch creek up the hill to an old stone structure that was from an original settlement.  Known as the Stone House (Picture below with Jessie looking at some recent storm damage) it is a popular place to rest on the trail or for high school kids to smoke.  It is also where the Lower MacLeary trail officially ends and the Wildwood trail continues up the hill to the right.  We stopped for a few moments to explore and then headed up the hill.

Once we got to the Audubon Society we found it closed but we could still wander around on the trails.  As a change up we got a nice picture of a snail, Hailey with the salamander, some wild berries, AND the ever present Forest Park trail slug.  This time on the tree.

According to our iPhone mileage it was 4.33 miles.  When I added up from the map with some guestamation for the Audubon trails (based on their map) I get more like 5.02 miles.

 

Day 3 – about 2 hours and 5’ish miles.  BUT we are not sure if the Audubon trails count as part of the All Trails Challenge

http://cyclemeter.com/e270d94f4da916b7/Walk-20160707-1844?v=1

Total – 11.79 of 80 miles completed so about 14% done. BUT we had to backtrack down the trail we went up so that % is wrong.

Total Dog Count: 15 (still, no new dogs on this hike)

Total Time: 4 Hours 47 Minutes

Thanks to Shawn, Dianne, and Hailey for a nice evening stroll.

Jul 222016
 
So I have been really bad in posting. I think mainly because of the old adage, no news is good news. Plus, Jessie has been doing a great job of keeping everyone up to date. Other than the odd twitches and an itchy forehead from the radiation I have been doing pretty good. Still have dizziness issues from the lingering vertigo (I think – seems to get worse as the week of treatments progress). We are waiting for a referral to an ENT at OHSU to see what he thinks. The original specialist appointment is not until mid August. Hoping to see if anyone else can shed some light on the problem.
 
Going to head back to work next week part time in the mornings, hit the gym, then off to treatments in the afternoon. Hope I can push thought the predicted fatigue that is supposed to hit in that 4th week. So far I have had good energy and I think that steroid has me wired throughout the day. Makes it hard to sleep at night most of the time. Staying consistent with exercise is supposed to help tremendously with the fatigue and recovery. AND I want to be in some type of cycling shape when this treatment is over. Racing session is just around the corner. Jessie does not want me to lose any more weight but I think I can stand to lose a few more pounds. I have hit my goal for the start of racing season but if I can drop another 5 and get some muscle back I would be pretty happy starting the season.
 
Found out our radiology oncologist likes to mountain bike. He has a friend coming into town mid-August and I promised to take him to our best trails. I need to be ready for that!!! Time to shop for a new helmet! Now that I have a compromised cranium I want to make sure I have the best protection I can get!!!
 
Now time to crank out some all trails challenge updates.
Jul 212016
 

The steroid they gave Tom seems to be working and his spasms are decreasing in frequency and severity along with the dizziness, though he still has some of the dizziness. We are tentatively looking at a part-time return for him to work next week. Work in the morning-workout, then I will take him to radiation and he can rest in the afternoon. 
And again, thank you to everyone who has taken the time out of their busy lives to send texts, emails, messages, cards, phone calls, presents, come to visit, brought food, stayed in hotels to see us, helped in the yard, signed up for the Tumor walk and those who have donated. More thanks to those who have driven in our crazy traffic and construction to get to us and those who have reached out across time zones. I know cancer and hospitals really aren’t most people’s cup of tea, but it really means so much and really does wonders for our spirits that so many of you have shown your support and continue to be part of our lives during all this. Big thanks to Frank Enderle and Jeff Torgerson for making weekly visits-Endo for even helping get Tom to some of his appointments when I have work conflicts and Torgy for keeping me sane. You all are so appreciated!

Jul 162016
 

We had the 6 week surgical follow-up yesterday. It seems like there is always a surprise when we visit that office and yesterday’s surprise was that the surgical fellow we had been dealing with (Dr. Ibrahim) had finished his fellowship and was on his way back to Egypt that very day so we had a new surgical fellow who had just moved to Portland. Dr. Ibrahim was really my lifeline on surgery day and met with me twice that day post-op to go over Tom’s status and how the procedure went and attended all his rounds in the hospital. He was the doctor who ultimately had to tell us the GBM diagnosis which I can’t imagine is ever easy no matter how many times you do it. We’re really sad we didn’t get to say good-bye and he didn’t get to see how well Tom is doing and that we have not let the diagnosis slow him down. For a surgeon, he was the most compassionate one we have met to date and I think he is going to do a remarkable job wherever he ends up in his future. The new doc seemed nice but seemed a little distracted by the GBM diagnosis and felt that he needed to let us know there was still hope (duh!). He did remark that the incision site is very well healed and the incision area has firmed up. We asked about biking and honestly this doc isn’t tremendously athletic so I don’t think he “gets it” but said he could do it as long as he is careful and there is always going to be the risk of trauma to the site. He also re-iterated that the most recent MRIs show no tumor regrowth at this time. We seem him again in 6 weeks as they are going to keep following him despite their work in this largely being done. We do have the scoop on another surgeon in Seattle formerly of OHSU who has had some great results with our oncologist Dr. Neuwelt as together they have an 8 yr GBM survivor and a 10 yr oligodendroglioma survivor that Tom is friends with. If there’s ever another surgery needed, we may consider him if he’s still practicing at that point. Though there’s no reason to think the current surgical team didn’t do an excellent job! 
Sunday Tom got a little too ambitious and did his hour on the stationary bike and then we did a 6 mile hike. Probably a bit much and we thought he was having some muscle spasms in arms and legs from overdoing. We saw Dr. Jerry on Monday who thought it might be electrical impulses from low magnesium levels, but his labs on Thursday showed the magnesium levels were fine (platelets and white blood count are doing great too!) so yesterday they prescribed a low-dose steroid as it could be a known and common side effect (microseizures) from the radiation causing swelling. We see Dr. Jerry again Monday and he can weigh in once he’s had the steroids for a few days. 
There’s also been an uptick in the dizziness which they are hoping the steroid will help. We are going to redouble our efforts to get in with an OHSU ENT as his ENT specialist appointment isn’t until mid August to follow-up up on the vertigo. 

Overall Tom is still doing great, a little more fatigued this week from the radiation but no signs of nausea yet. 21 treatments to go!