Tom Bird

Nov 072016
 

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.

Nov 062016
 

​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….

Nov 032016
 

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!

 

Oct 312016
 

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

Oct 072016
 

​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! 

Oct 012016
 

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.

Portland Fresh Hops Fest

 

Oct 012016
 

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.

 

 

Sep 222016
 

​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!

Sep 212016
 

​Yah, last MRI Day!  Tiny hat celebration!  

This is a quick in and out, no contrast, half the tests done before 7am. We meet this afternoon with the oncology team to go over results and plan next round of treatments. 

Looking forward to “sleeping in” tomorrow. 

Sep 202016
 

​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