All posts by Tom Bird

Corn Cross – Last Cross Race of the Year

I did not want to get out of bed to do this race.  It was raining and I knew it was going to be muddy and it was going to be a bitch to clean my bike and it was going to be a lot of suffering…

What I am good at is registering, getting excited for a race, getting all my stuff ready, then the day of not wanting to go.  Jessie on the other hand is great and saying “suck it up buttercup, you are going” and she is right.  If I make her get up early on a Saturday or a Sunday I have to pony up and go.  My ONE saving grace is the weather forecast showed the current rain pushing through and having a dry race.

Corn Cross has been going on for a couple of years now and I have heard so many great things about it but could never schedule it in.  While Sad to not race Krugers I was excited to try out a new course and it did not disappoint.  When we got there it looked a lot longer than it was.  I think they said each lap was 1.5 miles but it looked like 2 to 2.5 miles.  When you have a huge farm to spread out on you sure can make a course look intimidating.  I don’t think it really rained much out there as the mud was very tacky.  The thick peanut butter stuff that packs onto everything and is a real pain to clean since it drys so fast and is sticky.  High quality farm mud.  Since I never raced here and did not get to pre-ride my first lap was just figuring out where to go.  After that I could try and really “race” – HA!  Again just with the older guys that started behind us.  My main competitor (just like at Heron Lakes and Barton) was over 70, oh how the mighty have fallen.  I will not see the results until Monday but I know that I passed a few guys in my race.  Jessie got some pictures to document that.  This was the strongest I felt but god I was glad it was over.  Again Patrick made it out.  Shared suffering is so much better than suffering alone.

Now things are bittersweet.  I don’t have to get up early on the weekends and deal with a muddy bike and a muddy me and make myself want to vomit but Cross is such a mental sport (it is for me anyway) I was just getting my head back into it.  I listened to a podcast back in the spring, I think it was one where they interviewed Angela Duckworth that wrote the book Grit and she mentioned that her family has to do one “Hard Thing”.  I kept telling myself – go do your hard thing, and thanks to amazing support from Jessie, I was able to do my hard thing every weekend.  Now my “Hard thing” can just be to go mountain biking and have fun.  Most of the time I don’t want to vomit when I am on my mountain bike.  It is a much more relaxing event.

I learned a lot about myself this year and am looking forward to starting my training for next year.  All I can do is improve.

Last Cross Crusade Race #8 – Barton

Barton is ALWAYS a brutal race.  Two nasty runups – it is long and hilly, always wet and muddy, and is a great finish for the Cross Crusade.  While a little bummed I did not do more Crusade races I am glad to have done Heron Lakes and Barton.  They are both great courses and really challenge you.  This course is so spread out Jessie could not run around too much and get pictures – PLUS I was pretty shot and did not make my last lap.  I was the cut off for our group.  While Heron Lakes was just a victory getting out there, Barton ( I knew it was going to be tough) was a severe blow to my mental state.  In the first picture I started way up at the front.  I have NEVER started that close to the front at Barton.  Going back over the years almost every picture shows me staging literally in the last row.  On the first lap I had so many guys go by me.  Very depressing when I used to be one of those guys that passed the slower riders up front.  That was one of the reasons I always liked starting at the back of Barton.  I was usually at my strongest by this race and it was fun to catch and pass people.  This time I was “that guy” in the way of the faster riders.  On my last lap I even hit a barricade and knocked it over into the racers on the other side.  My ego was more bruised than my body.  That shut me down for the rest of the race.  I did not want to do one more lap after that.  I just wanted to finish w/o hurting myself.  BUT I did have enough pride to beat the old guy in front of me.  Sort of a sad state this year.  All my battles have been with the 60+/70+ racers that start behind my group.  Really fitness has not been the issue the recovery from the vestibular neuritis is the problem.  I can turn pretty well to the right, the left is much more difficult, and anything really bumpy makes it hard to get a clear picture.  I hope I can rehab out of that.  Also great to see our friend Patrick Hunt out and racing.  It is always fun to share in the suffering.

Krugers, our traditional finishing race, was canceled this year do to Single Speed World Championships taking place in December so I will do Corn Cross the following week.  I have always wanted to do that race and now I can w/o the guilt of missing Krugers as I don’t think I could do back to back races.

Enjoy the pictures below.

Pictures from Today’s Cross Crusade Race

I want to thank Jessie for the pictures from today. I have never wanted a race to end so bad….

Battled with this old guy on the last two laps. He really wanted to beat me, I wanted to win too but honestly I did not care at the finish. I was just glad it was over and I did not quit and I did not throw upI At least now I will be mentally prepared for next week for what I consider the hardest race (that I do) of the year. Barton in brutal.

Finally back in the saddle

​Just finished 5 days of chemo, only 3 weeks left in the racing season, beautiful blue skys after hammering rain all day yesterday. How could I not go race?  Thanks to Jessie for supporting me and putting up with my feeble attempts to race bikes. Her inspiration keeps me going and sane through this life change. 

First race in new team kit. Pictures later since we used the big camera. Nice to have some teammates supporting while all you want to do is quit or throw up. Seriously closest I have come in a long time to throwing up. Someone was cooking bacon on the course and every lap it just turned my stomach. 

Now the reward for racing today. I suspect a nap later too….

Here it is, my new BFF

Well I got my Optune device today.  This is going to be quite the adjustment given my lifestyle.  I have included a few pictures so you can get an idea what I will be carrying around with me 24/7.

It comes with a cute little back pack and my 3 bay battery charger.  If I don’t have it plugged into a wall outlet I have to be on battery.  Looks like they run for about 3-4 hours before I have to swap.

Backpack
If I don’t like the backpack I can wear a nifty little sling show below.

20161102_170112

Then the whole thing is attached to the array pads that adhere to my head – one on each side, one front and one back. shown below.

The marks on my head are from a stretchy bandage thing called Surgilast as an added layer of protection to keep the pads in place.  I removed for the pictures.

20161102_16583520161102_165743

 

The cables run down behind my head into that white box, the box plugs into the “device” that creates the electrical field in my head to hinder cell division.

So that is it, I get to wear this as much as possible.  Change the pads a minimum of every 3-4 days.  Shower, shave head, reapply (and move slightly to give my scalp a break).  The good thing is I can replace the pads as often as I like so if they start to come off after the gym or I want to go ride my bike I can just remove and replace (with new pads) once done with my activity.

Fingers crossed this helps prevent those little bastard cells from dividing and they die off….  Time will tell.

At least my head will be warm this winter.  Time to go hat shopping!

 

What is the old adage, no news is good news?

That has pretty much been the status quo recently.

bertheadshot

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.

Info on Optune https://www.optune.com/

Details of success related to using Optune with Temozolimide (TMZ) chemo treatments

https://www.optune.com/newly-diagnosed-glioblastoma/benefits-and-risks-for-newly-diagnosed-gbm

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???

bert-ernie

First round of Chemo done

​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! 

Fall means Fresh HOPS!

While some people think of fall by the changing leaves, the cool crisp mornings and hot afternoons, pumpkins, apples, corn mazes, etc.

Jessie and I think of the best fall harvest of all, HOPS! The best way to enjoy them is the Portland Fresh Hop festival at Oaks Bottom. It is a fall tradition to gather on a glorious fall morning (well noon) and drink Fresh Hop Beer.

If you are interested in joining we will be there this Saturday Oct 1st from noon to …. enjoying my favorite festival of the year.

This will probably be my last hurrah before my next round of Chemo. Hope so see some of you there.

http://oregoncraftbeer.org/brewery-event/portland-fresh-hops-fest/

 

Back on the Chemo I go

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.

 

 

Scan results

​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!