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Wow, what a weekend (Labor day weekend post)!

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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

Tumor

No news is good news

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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.

MountainBike, Tumor

Back on the Bike!!!

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This post is long overdue.  Things, life, stuff, get in the way of posting consistently but Sunday was a HUGE day for me.  It all started at my weekly meetings with my Radiation Oncologist Dr Jerry Jaboin.  He had a friend. Jeff, coming to visit and promised Jeff they would go mountain biking.  Jessie and I LOVE to host people and show them around so I could not resist saying I would take them to Sandy Ridge.  When I found out Dr Jerry has never been that reaffirmed my offer.  I love that place and love to show it off.  The timing was perfect as it was a week after my radiation and chemo treatments ended.  Just enough time to rest up and recover a bit.  I contacted Steve and Scott and said it is time to ride.  I figured if I could not ride, Steve and Scott could show Jerry and Jeff around the trails.

I had a simple goal, go to Sandy Ridge – Ride up to Flow Motion, hit Lower Hide and Seek, and call it a day.  The climb was so much easier than I expected.  It was pretty squirrely going up the trail to the downhill part of Flow Motion due to my vision issues but the ride down went well.  I have never really gotten Flow Motion dialed in so I took it pretty easy but it was hard to avoid the fun jumps.  Steve and Scott rode ahead to take pictures of my “return” and it was pretty cool to be back on a mountain bike 81 days after brain surgery.  Honestly, at times, it was hard to concentrate because I kept thinking, dude, two and a half months you had brain surgery….

I still remember asking Dr Dogan when he said we are going to cut the tumor out; would I be able to ride?  He said not right away but in 3 months you should be able to.  Nice that he was wrong and it was less than that 😛

Lower Hide and Seek went much better as I could do that trail in my sleep.  It was less looking and more feeling the trail and it felt good.  Riding my mountain bike is much more comfortable than riding any other bike I own.  Even being on the new bike I am at home and that acclimation happened so quickly.  I have only ridden it twice before, the last time being Sunday before my vertigo attack.  I attribute my ability to ride so well as 80% bike 20% me.  That bike just rips!  Thanks Steve for talking me into buying it.

Once we finished I was tired but so jazzed I wanted to do it again.  Huge hugs from Steve and Scott added to the excitement.  Jeff and Jerry had huge smiles and were up for another go.  Off we went and did the same loop.  The second time the fatigue had set in a bit more so caution was high but I let if fly a bit on some of the jumps.  Before we started I predicted when we finished Dr Jerry would say, I am hooked, can we go next week.  Looks like I was right…..

Friday was another big day as I was finally “diagnosed” as to the cause of my vertigo.  I saw Dr Jeffrey Brown, he is an Otoneurologist.  They specialize in neurologic inner ear problems.  He diagnosed me with Vestibular Neuritis or Neuronitus.  Sept 8th I go in for more tests to determine the extent of the damage.  Fortunately, through my internet research and a comment from my primary car doc I had already come to that conclusion. I was referred to a vestibular rehab PT two weeks ago.  I have exercises I do twice a day to help regain the function of the deficit from the nerve damage in my left ear.  I attribute those and continuing to work out with my ability to get back on the bike again.

If it was not for the neuritis issue the riding would not be a problem as I feel great.  Nowhere in condition before all this happened but that is slowly coming back.  My first race is scheduled for Sept 7th and I don’t see anything preventing me from racing.  We plan to ride up at Sandy again this weekend so well on the way to some normalcy in life. I will enjoy it while I can!!!

Thanks to Steve, Scott, Dr Jerry and Jeff for making it a great day!

Funny thing looking at the pictures below, you can see the top one was first and maybe the second or third banked turn on the trail.  You can see I am low in the turn and pretty upright.  Still pretty tentative at this point.

The lower picture was near the end of the trail.  Now I am up on the bank and starting to lean into it.  Much better body position and starting to feel the trail again.

 

Flowmotion Turn One Flowmotion Turn Two

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Back to mountain biking!

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Another big milestone today-Tom’s return to mountain biking! I’m nervous but excited for him and this return to normalcy. It will be the longest time we’ve been apart since his surgery and the farthest distance. We bought him a new helmet last week that should be one of the safest out there. He’s been feeling really good these past few days and sleeping better now that he’s off the steroid. I know he’s in excellent hands as he’ll be going with Dr. Jerry and some of his best mountain biking buds. Take good care of my Bird you guys!!!

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Tom’s finishing day!

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Tom’s finishing dayThanks to facebook memories we discovered that August 15 is an auspicious day in Tom’s life. 4 years ago today Tom finished his Supply and Logistics degree and we were out celebrating. Tonight we celebrate the finish of the end of his radiation treatment and first round of chemo. He is a fighter! He is strong. He came through this better than we ever could have expected. He is relentless in his efforts to understand this tumor and everything he can do to fight it. He didn’t wallow in pity or fatigue but rolled up his sleeves and decided to give it hell. Tonight we celebrate his victory in the first round of this war. 5 weeks off and then we prepare for the next battle. Cheers to you my love!

Tumor

First Bike Ride in 5 months!!!

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Jessie got me out on the bike tonight.  We did a whopping 6’ish miles down to Summerlake park and back.  Balance was good, turning my head side to side was good, looking back over my left shoulder, not good.  I get a bit wobbly and can’t hold a straight line.  Have to really concentrate to do that.  Looking back over right was much better.  The other issue that has me concerned is when it got a little bumpy – that gave me some visual issues.  That is about it for the balance vision component.  The physicality on the other hand, that is an issue!!

I think this week will be spent on the trainer because I don’t think I could climb to the top of Sandy right now and feel good once done.  Just the little hills we did made my legs feel like lead and that was on my light road bike.  Lugging my heavy mountain bike up a much steeper hill for 3 miles that is a whole other story.  I am definitely weak and things just feel odd.  I don’t think the muscles are ready for heavy use yet.  LONG way to get for race shape in 3 and a half weeks.  First race might just be a parade lap.

Fingers crossed when that last chemo pill is taken on Monday the body starts healing fast!!!  I don’t have time to wait!!!

Diet, Radiation, Tumor

29 down 1 to go!

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Just one chemo/radiation treatment left on Monday.  Whoo Hoo!

It will be nice to have a long rest from this and maybe feel normal for a while?  There are still a bunch of appointments lined up until I see my Oncologists and do my post radiation MRI’s. I am currently seeing two different Physical Therapists.  One as part of the radiation/chemo treatments to help manage the brain/nervous system.  The other is for my balance/visual acuity issues from the inner ear issue.  Next week I finally get to see the Otoneurologist.  He is a Dr that specializes in neurological issues of the inner ear. If it was not for this problem I would be golden ponyboy (who got that reference ;p )

Since I am in the trial for the new contrast agent, I will have three MRI’s at 6 in the morning mid September.  They are going to have me taper off the steroid and hopefully I can get off the anti-seizure med as well.  I am not a fan of taking it.

I hope to go mountain biking on the 21st.  I told my Radiation Oncologist I would take him and his friend up to Sandy Ridge.  With the balance work the PT has given me I should be able to at least ride up the hill and roll down.  Won’t be doing anything “crazy” or ride like my old self but it sure will feel great to get back on the bike.  If I can just do one lap that will be a win!  (actually after thinking about it, if you are going to go mountain biking after brain surgery it is a good idea to go with a Doctor 😉

Today I am meeting with a group that is forming a racing team for cyclocross this fall.  I have been down the team route before and it did not really work out but I thought I would give it another shot.  It might be fun to go out to a few races and “support the team” when I am unable to race.   Since I will be starting chemo treatments probably the end of September racing will be quite limited and I am nowhere near race shape so I see lots of suffering in my future.  First race is set for Sept 7 at Alpenrose.  The Wednesday night Date Night series is probably my favorite.  Just a great way to spend the evening after work.  I have already registered and I will have 3 weeks to get ready!

After doing some reading it sounds like the 28-day Temodor cycle can really knock you down.  I am starting to get a bit worried.  Fingers crossed I am abby normal in how I tolerate those treatments as well.  The 6 week chemo/radiation has gone better than we expected or hoped.

Oh and I also wanted to note.  Being on this Ketogenic Diet one of the side effects can be horrible leg cramps.  The diet flushes water and thus often flushes out much of the electrolyte minerals that your body normally holds onto like: potassium, magnesium, and sodium.  I have had some cramping at night in my calves but last night they really hit me.  I could not make them stop.  I had some issues with this mountain biking in the summer a few years back and did some research.  Apparently Pickle Juice can help eliminate cramps.  So I got up and ate a couple of pickles.  When I finished my 2nd one the cramps had stopped.

So, if you are prone to muscle cramps – eat a pickle or two!

Sorry this post is a bit disjointed sort of a ramble but it is a beautiful Saturday Morning. I have my coffee, the hummingbirds, so I can ramble if I want…

Thanks Everyone for all the encouragement I appreciate it immensely.