Tumor, TumorWalk

Drink Beer to Cure Brain Cancer – I can get behind this…

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So no new real activity lately and I guess that is good news – BUT – we are getting near the time to mobilize TeamFoodBaby. Last year with very short notice we put together an amazing team for the Portland Brain Tumor Walk. Jessie will be getting the team setup on the fund raising site soon (the walk is on August 6th) but I just wanted to share a great way to help participate in the best way possible, by drinking beer. Migration Brewing is doing an early fundraiser with a bunch of breweries and special collaboration food. 10% of the Event’s proceeds will go to benefit the National Brain Tumor Society. This won’t go into TeamFoodBaby’s kitty but heck, all you have to do is show up and have a beer and you will be helping out. IN the grand scheme it is all about finding a cure.
 
Find the details here: https://www.facebook.com/events/573264756196882/
Tumor

Cheers to 2017

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Now that I have a few moments to myself, I have some time to reflect on this year before we head off to where the year started, Mary and Gordy’s cabin, and some well-deserved down time.

My first thought, damn this was a shitty year.  While some good things happened for the most part I would love to forget it.  The best moment was right at the beginning of the year.  I should have known something was up when my proposal to Jessie did not go as planned and almost did not happen.  It was an amazing moment that I will never forget and I am glad I was able to do it.  Still to this day I remember saying to myself, this is going to be our year.  I was so wrong!

After that we had one of the most terrifying drives of my life.  What should be a 4 hour drive turned into 6 hours of white knuckle hell!  Car and trucks in ditches, a semi wreck causing a 6 mile back up on the freeway, then the Subaru completely out of my control sliding on the ice a little this way a little that way.  I thought, after 5 and a half hours now we crash.  Thankfully we survived that without a scratch.

Fast forward three months and the vertigo hits.  I have never been that sympathetic to people with “vertigo”.  I always felt it was a made up problem and while I never openly said anything to anyone, I apologize for those thoughts.  It was completely debilitating, I could not move or open my eyes without throwing up.  After the whole, swallow my pride and get help, I had an ambulance ride to the hospital all of 5 blocks away.  If you think Uber surge pricing is bad, get a bill for a 5 block ambulance ride.  Being in such a state where I could barely open my eyes I will never ever forget the looks on the doctors faces when they came in with the results of the MRI, a brain tumor – BUT good news, we don’t think it has anything to do with the vertigo – YAY two thumbs up!  So now I have two shitty issues to deal with.  Honestly the brain tumor has been a piece of cake, the vertigo has been the persistent pain in the ass.

A couple months later (after a great trip to Bali with some amazing people) I get a chunk of my brain cut out.  Many people will tell you how having a life threatening issue is a greatest thing that ever happened to them.  There is a TED talk where a lady speaks about her tumor as the “best gift I ever survived” (and I understand her point since it is a life changing event) I would have preferred it not deal with this experience.  We were fully prepared for the “friendly tumor” an Oligo – thus the name Oblio.  Two weeks later and the word Glioblastoma caused everyone’s voice to sound like Charlie Brown adult voices.  I will always remember that moment but not what was said.  Yah I have had Chemo, Radiation, more Chemo but through all of that I never felt as sick as I did that weekend after hearing them say my tumor was an Glioblastoma.  The ONLY thing we took comfort in was that everyone said it looked like a text book Oligodendroglioma, our “friendly slow growing yah you can survive this tumor”.  Now it was the, you are going to be dead in a year tumor.

Jessie and I pored over the research and took copious notes and devised a plan to fight this.  Now the part that gets me teary eyed – all the support we received.  That was TRULY the greatest gift of the year.  I appreciate each and every one of you that helped us through my recovery, the tumor walk, being there to chat, visit, cheer us up, take our minds off this horrible shit, and keep us moving.  I knew we had great friends and family but the outpouring of support just stunned me.  I cannot thank all of you enough.

So that is it with the bad stuff.  On with the good:

  • I got engaged to a wonderful lady that continually fills me with joy.
  • We met Dr Jerry who challenges me to keep living my life and provides reassurance when we do down the rabbit hole.
  • I got back on the bike and actually did some mountain biking – thanks to Team Western Safety for that.
  • I raced in 6 cross races. While never a threat to win I got stronger as the season progressed and felt just being there made me the biggest winner on the course.  How many of those ass holes had a chunk of their brain cut out and were undergoing chemo.  Ha!
  • We took several fantastic trips – Bali, Kauai, and visited family in both Boise and Spokane.
  • I came back to work and feel, for the most part, pretty normal.

What I learned:

  • Life is not about stuff, it is about having experiences with great people (but having nice stuff can make the experience better: see mountain biking above (I would have cracked open my head if I did not have my new bike, thank you Jessie))
  • Try and make a difference for others. I think we get so wrapped up in ourselves that we miss out on helping others.  You really see that when you are in a Hospital a lot.
  • If you think you have it bad, there are others that are always worse off than you. I think about that while racing that there is always someone faster than you.  So fight your own fight and don’t let someone else get you down.  Everything is up to you, you are not entitled to anything.
  • This is probably the most important, be in the best shape you can be. I think my recovery has gone so well can be attributed to being relatively fit.  No, you don’t have to be a world class athlete or run marathons but you do have to be active, strength train, and eat right.  ELIMINATE processed foods, cut WAY back on sugar or eliminate as much as possible, and cut the carbs.  Sugar and carbs feed cancer – that is a fact.
  • You need to be an advocate for yourself – Doctors do not have a magic pill. They cannot fix things by waving a magic wand.  They can be overwhelmed by the number of patients they deal with – YOU need to educate yourself and come prepared.  Do not take what they say as gospel, challenge them, make them prove their theory’s, get second opinions.  AND listen (or read) these three podcasts

Yah, I am looking forward to 2016 coming to an end but there has been some bright spots throughout the year.  I have learned so much about myself, my friends, and just my perspective on life.  I hope all of you have a fantastic New Year’s Eve and CHEERS to 2017

Uncategorized

Who inspires us?

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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.

http://www.legacy.com/obituaries/bostonglobe/obituary.aspx?n=melinda-a-elwell-westerlind&pid=182628485&fhid=15218
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.

Oncology, Optune, Tumor

I know when the caged bird sings….

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…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!

CycloCross, Uncategorized

Corn Cross – Last Cross Race of the Year

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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.

CycloCross, Uncategorized

Last Cross Crusade Race #8 – Barton

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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.

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Things are trending in the right direction

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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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9.875

+0.525 (+5.61%)

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.”

 

 
 

CycloCross

Pictures from Today’s Cross Crusade Race

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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.