Yup, that sucker is empty. 5 days of Chemo done, now 23 days off. Not too bad just some mild cramps on occasion and 2pm fatigue that comes out of nowhere. I felt it was best to not ride in the last Date Night cross race last night. I was tired and this stuff makes me a bit more dizzy, plus, it was spitting rain and I did not want to get cold and wet AND have to clean my bike. Going to save my energy for Sunday CrossCrusade race. Hopefully my energy will return quickly. It is not like I am a threat to win, I just have to make sure I dont finish last!
Sunday night is the big night – first day of 28 day cycle – the denying reality is over. It has been a great break from treatments but sadly it has to come to an end. That is the shitty thing, there is no “cure” just hopeful optimism that we don’t see re-occurrence. So onto phase 3 of the standard of care (SOC) playbook. It started with cut the sucker out, then radiate and drug what was left, now just keep drugging it until it rears its ugly head. My Oncologist is old school and has great success with the old SOC. His theory, if it an’t broke don’t fix it. Well I am broke and I want to be fixed dammit so we are looking into additional therapies. One is Optune from Novocure. This is a device I wear on my head (as much as possible) that generates an electrical field to inhibit cell division. Amazing story behind the development of this technology (Read here). I always love stories that have the developed in the basement or garage aspect to them. This device has done so well they ended trials early to put into production. In many cases Optune is being considered part of the SOC since it has such a positive result.
That is sort of the problem once you have one of these suckers cut out. They don’t want to do too many things that deviate from the SOC and reserve the other treatments until re-occurrence. Sort of leaves those of us that want to prevent re-occurrence with few options.
I am getting pretty used to this Ketogenic diet thing. Actually I find it pretty interesting from a endurance training standpoint and look forward to adjusting my training accordingly. I have delved into some great books by Dr Phil Maffetone and his site (Here). His method is called Maximum Aerobic Function (MAF) where you train at a lower heart rate, stay 100% aerobic so you are burning fat for fuel, and build that system up so you generate more power at that lower heart rate. The great thing is you don’t need to eat all the time as you are not burning glucose as an energy source and have to constantly replenish it. Everyone, no matter how fat or skinny, has huge reserves of energy in our fat storage. You just have to train your body to use it. There are a whole lot of other benefits as well that I won’t go into so I can avoid the dreaded TLDR comments I will move on. If you are interested google him, look at his site, get a book or two from the library, (FYI: the red book is more for just a healthy lifestyle, the yellow one is for athletic training) – will turn your thoughts about athletic performance and training upside down.
Speaking of athletics, I raced again last Wednesday. Sadly because of my oncology appointments and MRI’s the week before I missed that weeks race. I paid for it last week. The good thing, my times have gotten progressively better (but then it is not always the same course week to week but very similar) but the suffering was much greater Wednesday than the previous two races. I think I pushed more just because I knew I could and that = more suffering. The last race of the Wednesday night series is this week. That is a day of decision right now since I will be 3 days into my 5 day chemo session. I just have no idea how I will feel and how I will recover. The Cross Crusade starts up next weekend and I hope to race on Sunday. Again will be a game time decision since that is just a few days after I end my chemo. I keep hearing how weak and sick people feel after their first round of high dose chemo so I don’t want to commit to anything because of pride if I think it will compromise me in other ways. I am hopefully optimistic I can race in both.
Wow, really digressed there. So to summarize after our victory post of no regrowth, I start on what they call the 28 day cycle. Five days of high dose chemo at night before bed (in hopes you sleep through the nausea), then day 21 blood test, day 28 blood test, if labs are good, another round. If bad we wait a bit for blood issue to resolve. Next MRI is in two months the Wednesday before Thanksgiving. At some point I will hear if I am approved for Optune (my insurance case worker has to approve) and that will be added to the mix.
The rest is continue on with life as normal, the problem is realizing you are not normal anymore, I have never craved normalcy so much.
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!
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
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.
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.
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.
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!!!