Who inspires us?

When we started this journey, Tom sought out resources and he came home from the library armed with books. The book that caught my eye in the pile was Defy and Conquer by Mindy Elwell. She was fighting an astrocytoma (grade 3) but had a much harder go of it than Tom has had to date. Her book was the first “resource” we had for the Keto diet and her success with it. Her story and her spirit inspired me and we picked up lots of tips for talking to the doctors. I had taken to following her story along with two others-Adam Blain-author of Pear Shaped (glioblastoma) (hilarious) and Bryan Bishop author of Shrinkage (inoperable brain stem tumor) that hit a chord with us as he was diagnosed shortly after his engagement. Following these people, I share in their victories and try to glean whatever I can that may be useful to us in our own journey. Tom also corresponds with a blogger in New York who is about 6 months ahead of him from when she was diagnosed and is also using Optune and she’s been another great font of strength in all this.I had watched this past month or so as Mindy’s story took a turn for the worse and today learned that she had passed. She stretched her 18 month prognosis into three years with her loved ones.

My heart absolutely aches for her family and friends. (There is info in the obit about how to donate to a trust for her kids). I love that her legacy and story of love, hope and courage will live on and we will keep up our fight to honor her memory now too. 
Okay Mindy, we’ll keep fighting. So who else is out there that is beating this? Well I found this lady-a 16 year glioblastoma survivor (!!!) and a semi-local woman at that. 

Home Page

This woman is incredible. Her tumor keeps coming back and she keeps knocking it down each time. I’m really looking forward to reading her full story. 
And who knows? Maybe some day someone in our situation will look to Tom’s blog as a beacon of hope during their dark hours. If we’re really lucky, and if I can ever get him to sit still long enough, maybe we’ll even get a book out of him. 
Wish us luck for tomorrow. Results late Wednesday.

I know when the caged bird sings….

…it is when this bird takes his Optune pads off.

The Novocure/Optune results released this week have been very positive and I know it should be helping to keep this old tumor at bay AND it is a great non-invasive way to treat but it does feel like a cage at times.  I have gone just under three weeks with this thing and when I first heard about it I could not figure out why (if you had the pads on) you would not be running it 24/7.  Now I understand how nice it is to have it off.  I really noticed it yesterday when Jessie put it back on after several hours with no pads on.  My cross races and gym time are about the only time I don’t wear the pads and those 2-3 hours are glorious.  After experiencing that feeling I think we will settle into an every two day rotation where we replace my pads at work after I go to the gym.  Being unencumbered is so nice.  My mom has been on Oxygen due to pulmonary fibrosis and I can relate to her situation always being attached to something.  It is so draining to constantly be lugging something around.  Thank god I have the new version that is so much smaller than the previous version.  I hate to complain about something that is working to save my life but it is a transition accept and deal with.

Plus these pads get heavy, the four pads together weigh just over 8 ounces and then have a 2 foot cable pony tail.  It seems like you always have something tugging you down like a ball and chain.  I am less likely to get up and do something because I am attached and have to lug this thing around.  The backpack is helpful but that gets cumbersome and annoying after a while.  The pack is just a little small for me.

Yesterday was so wonderful with probably the longest period of not wearing it.  I just felt that weight and tug once Jess started attaching those pads – my cage, keeping me from flying like I used to.  But better to have some clipped wings than to have no wings at all.  Optune, just keep me alive and I will find my own way to fly.

MRI next week – fingers crossed it is a non-event AND we get to see Dr Jerry after his return from the Society of Neuro Oncologists (SNO) conference.  I am sure he will be all jazzed with new and exciting discoveries that will pump us up as well.  Half the battle is looking forward, staying positive, and having little victory’s.

Here is to next weeks VICTORY!

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.

Things are trending in the right direction

Long-Term Analysis of All 695 Patients Enrolled in Novocure’s Phase 3 Pivotal Trial in Newly Diagnosed Glioblastoma Confirms Successful Interim Analysis Results and Demonstrates Superior Two- and Four-Year Survival RatesBUSINESS WIRE 4:00 AM ET 11/18/2016



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QUOTES AS OF 10:48:27 AM ET 11/18/2016

Patients treated with Optune® together with temozolomide demonstrated a significant increase in progression free and overall survival compared to patients treated with temozolomide alone
EF-14 patients treated with Optune together with temozolomide experienced a 70 percent improvement in survival rate at four years compared to patients treated with temozolomide alone
ST. HELIER, Jersey–(BUSINESS WIRE)– Novocure(NVCR) announced today that a long-term analysis of the full trial cohort from its phase 3 pivotal EF-14 trial of Optune® in combination with temozolomide for the treatment of newly diagnosed glioblastoma (GBM) confirmed the superior survival results seen at interim analysis. The long-term analysis demonstrated superior two-, three- and four-year survival of patients treated with Optune together with temozolomide compared to temozolomide alone. The interim analysis results – published in the Journal of the American Medical Association (JAMA) 1 in December 2015 – showed significant extension of both progression free and overall survival in newly diagnosed GBM patients receiving Optune with temozolomide compared to temozolomide alone.
EF-14 Principal Investigator Roger Stupp, M.D., Professor at the University of Zurich and Director of Department of Oncology at the Zurich University Hospital, Zurich, Switzerland, will present these late breaking results at the 21st Annual Scientific Meeting of the Society for Neuro-Oncology (SNO) on Nov. 18, in Scottsdale, Arizona.
“The analysis of the full dataset confirms the improvement in both progression free and overall survival we saw in the trial’s interim analysis, and demonstrates superior long-term survival,” Dr. Stupp said. “These mature results further validate Optune as a standard of care treatment option for glioblastoma, providing patients with a therapy that can extend their survival while maintaining their quality of life.”
“We are excited that Novocure’s long-term analysis of the EF-14 trial confirms the interim analysis results of superior overall and progression free survival, while providing new data on potential long-term survival benefits for newly diagnosed GBM patients,” said Elizabeth M. Wilson, President and CEO of the American Brain Tumor Association. “GBM patients need better treatment options, and it is a great day when new evidence shows that we are making progress in treating this disease.”
The long-term analysis of all patients (n=695) shows that:
· Patients treated with Optune together with temozolomide demonstrated a significant increase in median progression free survival (PFS) compared to temozolomide alone (median PFS of 6.7 months versus 4.0 months, respectively, hazard ratio=0.63, p=0.00005).

· Patients treated with Optune together with temozolomide demonstrated a significant increase in median overall survival (OS) compared to temozolomide alone (median OS from randomization of 20.8 months versus 16.0 months, respectively, hazard ratio=0.65, p=0.0006)

· The percentage of patients alive at two years in the Optune together with temozolomide arm was 43 percent compared to 30 percent in the temozolomide alone arm, a 43% increase in the chance of living two years.

· The percentage of patients alive at four years in the Optune together with temozolomide arm was 17 percent compared to 10 percent in the temozolomide alone arm, a 70% increase in the chance of living four years.

· Consistent with the interim analysis, the OS and PFS benefit of Optune together with temozolomide compared to temozolomide alone was seen across all patient subgroups tracked in the EF-14 trial, including patient age, performance status and tumor genetics.

· The safety profile in the long-term analysis was consistent with the interim analysis of the EF-14 trial.

“The long-term analysis further supports our data showing that Optune together with temozolomide is a better treatment option for newly diagnosed GBM patients compared to temozolomide alone,” said Asaf Danziger, Novocure’s CEO. “We believe these results will give health care providers further confidence in our therapy and transform the standard of care in newly diagnosed GBM. Our priority is to improve the lives of GBM patients, and we believe these results will help us to accomplish our mission.”



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.

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


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.



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!