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

Aug 132016
 

Just one chemo/radiation treatment left on Monday.  Whoo Hoo!

It will be nice to have a long rest from this and maybe feel normal for a while?  There are still a bunch of appointments lined up until I see my Oncologists and do my post radiation MRI’s. I am currently seeing two different Physical Therapists.  One as part of the radiation/chemo treatments to help manage the brain/nervous system.  The other is for my balance/visual acuity issues from the inner ear issue.  Next week I finally get to see the Otoneurologist.  He is a Dr that specializes in neurological issues of the inner ear. If it was not for this problem I would be golden ponyboy (who got that reference ;p )

Since I am in the trial for the new contrast agent, I will have three MRI’s at 6 in the morning mid September.  They are going to have me taper off the steroid and hopefully I can get off the anti-seizure med as well.  I am not a fan of taking it.

I hope to go mountain biking on the 21st.  I told my Radiation Oncologist I would take him and his friend up to Sandy Ridge.  With the balance work the PT has given me I should be able to at least ride up the hill and roll down.  Won’t be doing anything “crazy” or ride like my old self but it sure will feel great to get back on the bike.  If I can just do one lap that will be a win!  (actually after thinking about it, if you are going to go mountain biking after brain surgery it is a good idea to go with a Doctor 😉

Today I am meeting with a group that is forming a racing team for cyclocross this fall.  I have been down the team route before and it did not really work out but I thought I would give it another shot.  It might be fun to go out to a few races and “support the team” when I am unable to race.   Since I will be starting chemo treatments probably the end of September racing will be quite limited and I am nowhere near race shape so I see lots of suffering in my future.  First race is set for Sept 7 at Alpenrose.  The Wednesday night Date Night series is probably my favorite.  Just a great way to spend the evening after work.  I have already registered and I will have 3 weeks to get ready!

After doing some reading it sounds like the 28-day Temodor cycle can really knock you down.  I am starting to get a bit worried.  Fingers crossed I am abby normal in how I tolerate those treatments as well.  The 6 week chemo/radiation has gone better than we expected or hoped.

Oh and I also wanted to note.  Being on this Ketogenic Diet one of the side effects can be horrible leg cramps.  The diet flushes water and thus often flushes out much of the electrolyte minerals that your body normally holds onto like: potassium, magnesium, and sodium.  I have had some cramping at night in my calves but last night they really hit me.  I could not make them stop.  I had some issues with this mountain biking in the summer a few years back and did some research.  Apparently Pickle Juice can help eliminate cramps.  So I got up and ate a couple of pickles.  When I finished my 2nd one the cramps had stopped.

So, if you are prone to muscle cramps – eat a pickle or two!

Sorry this post is a bit disjointed sort of a ramble but it is a beautiful Saturday Morning. I have my coffee, the hummingbirds, so I can ramble if I want…

Thanks Everyone for all the encouragement I appreciate it immensely.

Jul 122016
 

We are two weeks officially into the Ketogenic diet today and it’s going fairly well but the carb cravings are making me a little nuts. Surprisingly not missing the alcohol much. I am down 5 lbs and the bigger victory is that Tom is not down any weight. This week I’ve traded a little variety in the meal plan for my sanity and since the recipes make 4 servings, we’re having leftovers. 🙂 I also tried my hand at ketogenic peanut butter cookies this week and they must have been edible as Tom downed 5 of them as soon as he discovered them. Most of the resources on this diet are geared toward losing weight (though it is also used to treat epilepsy and fight cancer) so we were fortunate to get a dietitian through OHSU as a resource who is helping to make sure Tom is still doing all the right things nutrition wise. The University of Michigan has a study going right now regarding this diet and Tom’s specific type of tumor (Glioblastoma) that we are reading up on. 
We saw Dr. Jerry again today. Honestly that man is the weekly dose of hope that we need in our lives right now. Love him. Nothing new really except he is attending a Glioblastoma conference this week and he also said he made a list of trials that he wants to bring to Portland. If he ever moves, we are going to follow him. That’s right folks, there is definitely a restraining order in our future. 
One final bit of good news. We got the results of Tom’s series of MRI’s and there is no evidence of tumor regrowth since the surgery. Big sigh of relief. He’s also doing really well so far with the chemo and radiation. 25 more treatments to go!