4 years ago today I walked into OHSU to have my Brain Tumor removed. Such a long and short time 4 years can be. It is a VERY long time for those of us with a Glioblastoma but such a short time when you look at our lifetimes. I have seen too many people not make it this far after diagnosis, people I felt were just as capable (or more capable) of beating this cancer thing. Every day I wonder why have I made it this far, how long will it last, can I hit that 5 year mark, what they used to call “remission”? I just think, that is when I can get life insurance again so I can make sure Jessie is well cared for when this damn disease catches up to me.
Hitting milestones puts things in perspective. I can be rather fussy, I want things clean, neat, and tidy (yes, this is rather selective) BUT life is messy, we don’t come with a definitive manual how to live it. A couple things I have learned over this past 4 years, don’t put things on hold and don’t obsess on making it perfect. This year we finally put in a raised bed garden and one of my favorite things to do is walk out with my cup of coffee and check it out each morning. We threw in a ton of flowers and plants this year. Are they all I the “perfect spot”, don’t care anymore because I am going to enjoy them where they are.
4 years ago I was bound and determined to get back on my bike and every spring I wonder how much longer do I have left. Last week I was finally back on the mountain bike and while there was a lot of pain and discomfort grinding up that hill the reward is a blast flying down. Yah we got muddy and sweaty and it is a pain to clean everything but damn it is fun.
Tomorrow it will be 3 years since we adopted Olive and what a whole new world of mess that has become BUT she also provides an endless amount of joy. She is one of the most unique dogs I have ever encountered. Her ENDLESS amount of dog hair drive me crazy and my God can that dog snore!! She is also sweet and loving and has those giant sad (manipulative) eyes. On her adoption anniversary she gets to sleep in our bed (and I get a horrible night of sleep) but it makes her so happy to be in our bed and everyone should have an opportunity to be happy.
In 4 years a lot can happen, some of it good, some of it bad, embrace all of it! Get out there and live it, embrace the mess, the sweat, the joy and relish the fact we are alive. You only get this opportunity once so make the best of it!
Thank you everyone that have loved and supported me over the past 4 years. I am eternally grateful and look forward to relying on all of you for the next 4 (and the 4 after that and so on…)
That has pretty much been the status quo recently.
Finished first round of 28 day chemo cycle and both blood tests show I am ready for the second round and my bumped up dosage. I have not raced since September 28th. The timing (and my motivation) have not worked out. BUT we had a great week long vacation in Kauai that more than made up for any missed races. I would love to get out there and race this weekend but that might be a tall order after a week of higher dose chemo. I will keep on the bike this week and see if I can get the legs in shape.
The funny thing I noticed; the cold and wet and dark have not really deterred me, it is the clean up after. It is so much work if the mud is out. I see the pictures and videos from the races and it just makes me bummed that I did not go race. I also feel pretty dialed into my body and I know not racing is the right decision right now. The next three races are brutal hard so getting the motivation and energy up is going to be quite the task – sitting on the trainer and watching football is so much more inviting. They also moved my race an hour and a half earlier. That makes it even harder to get up on a weekend, eat, pack up all the crap, and head to some rainy soggy venue.
I did get out for a mountain bike ride once we got back from Kauai. WOW, that really kicked my ass. Thanks to Scott and Clay for putting up with my slow ass all day. I clearly went off the keto diet while on vacation and my body did not react well to being confused once back. I did not have any energy plus not riding all week really caught up to me. The next day I had my blood test and found my red counts were pretty low. Hard to move oxygen around when you don’t have enough hemoglobin to transport.
On the new news front I have been approved for a really cool device called Optune from a company called Novocure. This device went so well through trials they stopped them early and Optune has become a part of the standard treatment for newly diagnosed Glioblastoma Patients. Pretty amazing stuff OTHER than I have to shave my head. Real bummer as it has just started growing back after radiation. I made the comment to my Radiation Oncologist Dr Jerry that he made me look like Bert of Bert and Ernie fame. Thus we changed our Halloween costume to take advantage of my remaining hair tuft. The costumes have been a huge hit. I still cannot believe I came to work this way. Halloween is Jessie’s favorite holiday so I will do what it takes to make her happy.
So expect pictures of my new headgear Wednesday and my first impressions. Hard to go from a somewhat normal life back into the fight against cancer. That is the worst, it is more psychological than physical anymore or seems to be.
Oh and tonight is the grand shave, I am joining the club Peter, Steve, and Jeff – any advice???
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
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.
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.