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

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