Sep 222016
 

​Just finished with Neuro Oncologist and Dr Jerry our Radiation Oncologist it was great news. My scans were clear and showed no evidence of regrowth. 

I hope I NEVER get tired of saying this but it was better than we expected and better than they expected. 

Next round will be 28 day cycle of chemo. 5 days on 23 days off. Another scan in 2 months. 

Now time for dinner – whoo hoo!

Sep 212016
 

​Yah, last MRI Day!  Tiny hat celebration!  

This is a quick in and out, no contrast, half the tests done before 7am. We meet this afternoon with the oncology team to go over results and plan next round of treatments. 

Looking forward to “sleeping in” tomorrow. 

Sep 202016
 

​Ugh day two of 6am MRI’s. THIS time with coffee. Won’t make that mistake again. Yesterday they were an hour late and that = hangry Tom and Jessie. Good news, they changed how this study works. These scans are my new baseline scans. I only have to do the three scans if 25% of the tumor grows back. I don’t plan on that happening so maybe won’t have to do the MRI gauntlet again. Just a normal one hour scan. Whoo hoo

Sep 112016
 

So Friday Night concert – got home somewhat early so I could get up and be at Cabela’s at 6:30am to drive down to Alsea Falls for shuttle day.  The Balloons were out, I think we saw 5 of them?

Met up with Steve, Scott, Clay, and Alkai for a great day at Alsea Falls just south of Corvallis in the coast range.

This place is amazing and when you can get a ride to the top it is even better.  This is my 2nd mountain bike ride since the brain surgery and recovery from the vestibular neuritis issue and I was worried how I would do.  Also, I just two days to recover from Wednesday race was not sure how my legs would do.  I have only ridden here once before and that was at the shuttle day last year.  I don’t know these trails like I do at Sandy Ridge so I had to be a bit more dialed in.  The top section is little more rootie and rocky and that is what causes me the most problems.  The middle and lower sections are a lot more buffed, swoopy, and wide open.  I can see and focus a lot better when it is smooth like that.  Ever so slowly I am getting the feel back.  The new bike is making up the difference.  I could not have ridden this trail like I did on my old bike.  The first lap was fun and I was fresh, this is where my legs felt best but I did not know the trails yet so I had to keep it somewhat restrained.  Second lap was better in that now I knew the turns and where some of the obstacles were located but I really noticed my legs were starting to suffer.  Third lap was the hardest, we had a couple delays due to a crash by Clay and a punctured tire by Scott so lots of down time but still my back and legs were done.  Clay, Alki, and I called it a day and it felt nice to get out of the riding gear and recreate.  Steve and Scott went on another lap.  Once everyone was in we proceed to feast on Steve’s sammich that I should have taken a picture of to show all of you the epic size of that thing.  I was too tired at that point.  Weather was perfect, crew was fantastic, and the day went better than I expected.  The heart was willing to do another lap or two but the legs were not there.  I could feel every lap the fatigue was causing little mistakes that I knew would become big mistakes.  When you are riding like that you DON’T want big mistakes!!

Should have taken more pics but really just wanted to enjoy the riding and hanging with the guys.  Thanks for taking it easy on me and making me feel safe out there.  Looking forward to the next one…

Addendum 9/14: Just found out there was a photographer out for the Alsea Falls Shuttle. He got a good shot. Too bad he did not have a sign out so we knew where he was. Often he kind of startled you.  Added below the gallery

 

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Sep 112016
 

After the Labor Day travel it was back to work full time, UGH!  I was getting used to this part time stuff.  In addition we had a packed week.

  • Tuesday – Dinner with Torgy and Alana (oh and an unexpected blood draw – thank you cancer for reminding us)
  • Wednesday – My first Cross race of the season followed by our second fantasy football draft
  • Thursday – three hours of testing on my vestibular nerve and FOOTBALL
  • Friday – We won tickets to the Zoo concert.  Jake Bugg
  • Saturday – Me, Alsea falls shuttle day – Jessie, Dance and Tigard street fair.
  • Sunday – Laundry, yardwork and FOOTBALL! (and some down time)

So I will make this quick – great time catching up with Torgy and Alana.  We saw Alana and Brian’s summer production of Into the Woods.  They volunteer to do a 5 week summer musical production for middle and high school students.  It is always fun to see these kids pull off a Broadway musical, ACMA Theater. Then hear about the all that went on with the production.  I am always impressed what these two can pull off each year and with the talented kids they get as well.

Wednesday was my first race – Honestly this is the one thing I was most looking forward to and dreading at the same time.  When the doctors at OHSU said I had a brain tumor and they were going to cut it out one of the first things I asked was how soon I could ride once surgery was complete.  I was assured 3 months.  Well three months and 7 days later I did just that.  I was more nervous for this race than all but my first one.  It really helped that it was the Wednesday night “Blind Date at the Dairy” race series as it is my favorite and I know this course so well.  Being on this Ketogenic diet has really thrown my nutrition and race prep dietary planning out the window.  I was not sure how my body would respond not having carbs to rely on as a fuel source.  There is not much documentation utilizing strictly fat for high intensity competition.  There is good literature when doing all day low intensity like ultra’s or centuries where you keep your heart rate relatively low and go for many hours.  Cross is not like that at all, it is 100% for 40-50 minutes. In addition to just the nutrition, I am still dealing with my balance issues (more on this on the Thursday post) so I was worried about being a pack and dealing with the unexpected in a race environment.  Plus my fitness is not even close to what it used to be.  This was going to be my year to move up in class and was why I was working so hard in the spring.  (Subsequently probably helped me get through this whole tumor/nuronitis issue as well).

I had two goals, finish the race and in true Team Food Baby form, “Not come in last”!!  I staged in the back and off we went.  The pack started off pretty slow so I thought it would be a good opportunity to move myself up a bit.  I wanted to just ride my own pace and got in a group of about 5 of us doing the same.  When I looked at these guys I told myself I have to beat them, I am better than this even with all I have gone through.  I used the first lap to “settle in”.  On the second lap as I was starting to push a bit harder, there is a path as you come out of the velodrome that follows some trees and bushes before you do a 180 and head back toward the main area I felt a sharp pain on my left butt cheek.  Then I felt it again in a different spot.  In looking at the guy in front of me I saw a bunch of yellow jackets buzzing around him.  Almost simultaneously 3-4 of us yelled I just got stung.  While I got popped three times on my ass I was better off than the guy in front who had one go into his helmet and he had to stop and quickly get his helmet off.  After the third lap the sting was starting to fade.  Thankfully the course staff rerouted us away from that section and got some wasp killer out. Typically these races are in the 4-6 lap range.  I heard the announcer say that this was a long’ish course (1.7) miles and he expected us to do 4 laps.  I was keeping an eye on lap times and was running in the 8 and a half minute per lap.  I was planning on just 4 laps, heck I was hoping for just 4 laps,  so on that 4th lap I started pushing to pass several guys I knew I should beat.  As we were coming into the infield just before the finish line I heard the bell.  The bell signifies the last lap so one more to go.  CRAP – I had expected this to be the last one.  When I looked at my computer I realized there was a lot of time left, I had to do one more lap – shit.  I had used up most of what I had on that 4th lap expecting to finish.  Once across the line and off for another trip I had to rest.  There is a long downhill stretch and a tight circle then an uphill that routes around the main course area then back into the trees and up a hill with steps cut into it.  I got passed buy this fat guy.  That is when the resting ended I could not lose to this guy, I can rest when I am done.  Somewhere in there I passed him, I think it was where we head into the trees and up the steps.  I just remember after the steps and turning back into the trees on a down hill seeing him fall over cramping up.  I knew I did not have to worry about him anymore and I could target the guy I really wanted to beat as I had lined him up on the 4th lap.  While I tried I did not have the gas to catch him BUT I did achieve my goals.  I made the race, and did not come in last.  My race is a mixed group of guys over 40 racing in two classes 3’s and 4’s.  I raced 4’s and out of all those guys (and starting in the back) I came in 54th out of 62 finishers.  5 guys did not finish.  Not bad for a guy that had a craniotomy a few months ago and still cannot walk heel to toe in a straight line without losing his balance.  I know I could have got the two in front of me if I had just pushed a bit more.  Will see what happens next week!

Oh and I almost forgot, the bee’s created a controversy on the OBRA Chat as the yellow jackets were referred to as bees and not wasps.  When it was announced that the dairy was going to “take care of them” one individual said not to hurt the bees as they are in a global decline and need to be protected.  It was pointed out they were not bees, they were in fact Yellow Jacket Wasps and they should be eliminated.  The race organizers announced a bee sting contest:

There were a lot of things that made last night special. Perfect weather, a magical sunset, the healthy competitive spirit shared by our competitors… oh, and the enormous swarm of angry bees full of hate. Once located we fought bravely, turning the course into a wild maze around the occupied tree and emptying a can of bee spray into their base. By that point rider and course worker casualties were extensive, and the offensive chemical tactic only seemed to make them more angry.

To honor our wounded (operations crew excluded), we’d like to announce the first and hopefully only:
BLIND DATE BEE STING CONTEST!
Submissions will be judged by location (no photo evidence, please), intensity, and number of stings. Extra credit for creativity and storyline. Winners chosen by a panel of medical professionals and celebrity guests, Prizes to be determined.
I repeat, photo evidence is not allowed, i’ll take your word for it. If i see that little paperclip on the email its going to be deleted.

My submission is as follows

Ode to the Bee

(In your best Forest Gump voice)

Something bit me!

Oh Mr B how can it be, you bit me?
Pop, Pop, Pop, One, two, three

UnBeelevable Mr B you stung me.
It wasn’t me, you say, Mr B

Vespidae Vespula, the left buttock wasp
Attack while we race cross

Yellow jacket alert
Skip that section, no dessert

Finish the race as the sting dissipates
Only to return as an itch that never abates.

Next week you will be dead
And I will not tread

On you Mr B
As you are a friend to me…

After the race was done we rushed across town to do our 2nd fantasy football draft.

Thursday was my long awaited testing of my vestibular system.  I did a hearing test, pressure tests, a bunch of tests with these goggles on that can track my eyes as I look at dots moving in front of me.  Then they blackout the goggles and watch my eyes with infrared so they can see what my eyes do when they move my head around but I have no reference point.  Probably the coolest and most interesting test was the water test.  They put water in your ear that is 7 degrees colder than body temp, then 7 degrees warmer than body temp for 30 seconds.  Then once they stop if the vestibular nerve is working you will feel dizzy. That worked on my right ear indicating normal.  My left – nope.  So she did a third test with even colder water and still nothing.  So basically my vestibular nerve on my left side is no longer working.  Since I have started vestibular rehab that is basically all I can do as these nerves generally don’t repair themselves.  While that is what they thought, the audiologist has seen two guys come back in with some partial recovery so maybe I will be lucky and get some recovery too.  But then, once I go back on chemo, I don’t think my body will repair like it would normally so I am not too optimistic there.  She said it generally takes about 6 months to start recovery and 12 months to get somewhat back to “normal” function with the rehab PT.  Given I had a little procedure in my first 6 months since occurrence she feels I have done remarkable in my recovery.  I meet with the Dr next week to go over the results in more detail.  So more on that later.

Thursday night was me suffering from Wednesday racing and FOOTBALL! First game of the season and it was a good one.  The Denver Carolina rematch.  Inbetween I was trying to pack and get ready for Saturday mountain biking at Alsea Falls.  It was shuttle day!! Pay $35 and you get a ride to the top and can do as many laps as you can fit in.  Whoo Hoo!!!

Friday FREE tickets to the last concert at the Oregon Zoo.  The Zoo concerts can be a lot of fun but a bit crowded.  This was really relaxing as it was mildly attended, we did not pay for it so were free to leave at any time, and got there right after work so had plenty of time to just wander and see some of the zoo animals.  Sadly after labor day they go to winter hours and the zoo officially closes at 5pm so we could not see that much.  Since I posted on FB live at the concert I will just include a couple of pictures here.  It was a very nice night!

Saturday was Alsea Falls shuttle.  I will save that for its own post as this one is now quite long.

Note: when my pictures were uploaded to Google Photos from my race, google put them into a little video.  Rather than me upload those pictures I will just upload that video.  It had most of the good ones in it.

Sep 112016
 

Sometimes, when I have a few moments to reflect on what we do I have no idea how we do it.  These moments of quiet time I cherish.

Note: sorry this is going to be a long post as I am not as good as Jessie typing up quick updates.  One, you will see we have been rather busy,  two, I don’t really like typing on my phone to post a message, and three, I like to reflect a bit about what I am going to say.

It all started last week on Thursday when my niece Amy and her boyfriend stopped in on their way to the coast.  We had a “mini” pub crawl through Tigard.  Not our best showing but it sure was easier than going into town.  We finished by watching the Beaver game at Big Al’s and while it looked like they had a shot to win it.  They could not follow through.

Next day we had to get up for work and that afternoon we flew to Spokane for the start of our Labor Day whirlwind tour.  Friday night went to dinner with my mom and sister once we got into town.  Saturday we had a fun BBQ at my sisters house and got to meet my (ugh hate saying it this way but you know you are old when your nephews and nieces (the ones that YOU changed their diapers) start having their own kids!) Great Niece, Allie, new dog.  What a great demeanor.  She was playful and loving and goofy and fun.  Perfect for a teenage girl (or a brain cancer survivor – hint hint Allie).  A mix of a belgian malinois and blue heeler so you know she is going to be smart.  She had the malinois coloring but the blocky head and smaller stature of a heeler.  At some point Jessie and I will get a dog and something like this little gal would be a good fit.

Once everyone went home we went to visit Jax (Jaxon) and Tara.  We always seemed to have a conflict on past visits so I have not seen him since he was a baby.  It was fun to play with him kicking the ball around on a wonderful Spokane fall night.  We got to play with some bugs and he just loves to run.  Damn these kids grow up fast!!!

We then made a trip over to visit mom one more time before we had to get up at 4:45 to catch our 6 am flight to Boise.  It was great to see her and let her know I am doing well.  I have found it is one thing to talk to people on the phone or via email.  When they actually get to see you it really sets in that I am currently doing quite well and expect to continue this way.

Sunday morning off to Boise for Tyler and Haley’s 16th birthday (Jessie’s nephew and niece).  Seriously, this was a weekend to make both of us feel old!! Once we got into town we had a quick lunch and off to Idaho City and the hot springs.  I guess there used to be a place here for quite a while but it got rundown.  Looks like they got new owners (or an influx of money) and built a new facility that is very nice, TheSprings.  If you find yourself in the area I recommend checking them out.  After a good long soak we went back to town for cake (our second boont cake that weekend) and ice cream followed by dinner at a pizza place.  Monday was hang with the twins time with Jessie being the math tutor and changing the word problems to have a “Portland Theme”.  Haley is learning quadratic equations and here is Jessie explaining how we have goats to eat the blackberry bushes in vacant lots and wooded areas.  (this replaced horses in the original problem as Jessie felt horses were not nearly as interesting as goats).  Jason and Becky prepped for a BBQ (two in one weekend, nice!) as Jessie and I did our fantasy football draft.  After the BBQ we visited Jessies family then headed to the airport for an 8:30 flight back to Portland.  I think everyone got in at the same time as the airport was PACKED.  I have never seen so many people waiting for buses to the economy lot.  We had two red buses come in and both filled up and there were still people waiting to get on.

While it was a fun trip and great to see everyone – I was pretty pooped and ready to rest. Sadly, it was the start of going back to work full time and a packed week so the rest would have to wait.  Will continue the week in another post to break these up a bit.

boont-cake

Sep 082016
 

Greetings! No news is good news and thought I would drop a quick line to let you all know that Tom is still doing great. He’s sleeping a lot better off the steroid but we are still trying to get his potassium and sodium levels in line being on the ketogenic diet. This week he also gets to undergo 4 hours of testing regarding the vertigo issue but his dizziness is doing MUCH better with him doing his daily rehab exercises. He has even driven a little recently. He returns to work full time on Tuesday and is excited for his first cyclocross race 6:30 on Wednesday at Alpenrose Dairy! Please come cheer him on if you are local! Have a great weekend everyone! -apologies, this was meant to post Saturday but timed out.