Aug 252016
 

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

Aug 212016
 

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!!!

Aug 152016
 

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!

Aug 142016
 

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!!!

Aug 132016
 

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.

Aug 082016
 

Jessie and I are thoroughly pooped. What a great day and great motivation heading into my last full week of radiation and chemo. This is a huge, Huge, HUGE, THANK YOU (!!!) to everyone that has supported us as we have progressed through this ordeal. From all the offers of; if you need something call, the meal train, our friends and family that came from far and wide to visit and participate in the the tumor walk, EVERYONE that donated and helped fund raise for the walk. I NEVER expected anything like this. I knew I had great friends and family and that they would “be there for me if I ever needed it” but I never thought I would “need it”. I cannot express enough how touched I am when ever I am in contact with any of you. Your generosity is greater than I can thank and I appreciate it so much.

Going to the tumor walk today I saw that same level of support in dozens of groups and families.  It is amazing how we can rally around to support each other in times of need.  It is extremely encouraging to see other survivors thriving and inspiring others as this can be a terrifying ordeal.  I was not comfortable being up with a group of people deemed Tumor Survivors.  I don’t feel I have survived anything.  Everything has gone so well and it has been such a short time I don’t feel like I have been through the gauntlet that others have.  While I hope I don’t have to, I am constantly worried that it will get worse at some point.  That nagging feeling that all has gone too well so that something bad is bound to happen.  Of course we intend to keep the all’s well going for as long as possible and hope to put this behind us soon.  Sadly with Brain Tumors I don’t think you really get to live that life.

It has been a great weekend seeing everyone and just having a good party.  We love to host and feel so comfortable in that environment.  Next time, I am going to have a beer!  And thank you all so very much for everything.  I honestly cannot say that enough.

Aug 082016
 

Tom’s sister Anita designed these awesome shirts and they surprised Tom with them at the walk today. I got one too!!! Tom’s niece Nicole and her boyfriend Ty also joined us. We are so thankful they all journeyed from Spokane for the event! Mot is Tom spelled backwards and as his mom retold it on the phone tonight he was a little boy who wrote “Mot” all over the place, walls, etc. ❤️❤️❤️

Aug 062016
 

So here we are, Brain Tumor Walk weekend.  Time sure has gone fast.  I have a week and a day left with Chemo and Radiation.  I feel great but look forward to the break.  Just to get off some of the pills for a while.  I feel like we are getting the Ketogenic diet dialed in a bit.  Going back to work, and I never thought I would say this, has been nice.  It helps to have a good routine again and feel like I can still contribute.  Honestly I think my brain is working better than before.  Maybe diet, maybe getting something removed that was not supposed to be there, maybe the slight decrease in stress knowing what you are dealing with vs guessing.  Not sure but I will take it….

First, before I get distracted (you know those butterfly thoughts…), I want to say the biggest THANK YOU I possibly can to all of those that have supported Team Food Baby in the Tumor Walk (hell, and Jessie and me in general).  In a very short time we have raised over $4100.  For those of you doing the walk I really appreciate your time and support.  Getting up early on a Sunday morning and walking around downtown Portland is not my idea of a great time. So far the walk has raised over $88k, with the top 10 teams raising 3/4 of that (we are pretty solid at #5 thanks to you folks).  The more I have learned about cancer, tumor, health research in this country the more I realize it is people like us that make the difference.  The government cannot fund all of it.  Drug companies need to make money so they only want to fund what can generate a return.  So it takes the public that has been affected in some way help push the research forward.

I found out this week about an amazing event in Ohio called Petotonia.  It was created to help fund cancer research at the Ohio State University.  The brother of a good friend is riding in it this weekend.  Since 2009 this event has raised over $119 million for cancer research at Ohio State.  My friend shared with me a story about a researcher at OSU that had a new way to treat GBMs (what I have) and could not get funding from any government source.  This group gave him $900k to fund the research.  Maybe one day I can participate in this event as I would rather ride my bike for 100 miles than walk around downtown Portland.

  • Info on the event -> Link
  • Link to event page -> Link
  • If you want to donate here is Vince’s fundraising page (it is never too late) -> Link

Oh and while I am on the soapbox I would like to highly recommend the book, The Emperor of All Maladies: A Biography of Cancer (Amazon).  There is also a great three-part series done by Ken Burns, of PBS documentary fame, on Netflix basically covering the book.  I find it amazing to look back at the history of our fight against Cancer and see the theories from the 1920’s still being used today.  I experience it every day when I get my radiation treatments. Fascinating stuff.

Sorry quite the detour there from where I wanted to go with this post.  I wanted to add, I am very excited to see my sisters as they are coming to visit and participate in the walk tomorrow.  It is such a great feeling to have so much love an support when you are faced with a horrible life changing situation like we are going through now.  I cannot express how great everyone has been.  If I could say one thing to all of you reading this, don’t wait for such an event to love and appreciate those around you.  Make time for it regularly,  I know life gets busy and it can be expensive or time consuming but the people in your life are what makes life worth living.  Don’t take that for granted.

All in all – I think we are in a very good place.  It has been liberating to get back into the gym and feel my body responding to the workouts.  It takes a bit longer to recover but I can feel my strength returning.  Racing starts soon and I hope to be ready.  Shooting for Sept 7th for my first race.  All I have to do is ride my bike in circles for 30 mins and not finish last!