Jul 282017
 

Can we get a serious round of applause for Josh Roeder at EastBurn? The beer sponsor for the river float they are putting on Sunday for Team Food Baby and the National Brain Tumor Society backed out at the last possible minute and he went and got an even better one (Founders) and had to update the signage. EastBurn has been our favorite restaurant in Portland going on 8 years now and it’s because Mike Bender hires the best people to work there. Thank you Josh!!! If anyone else wants to sign up for the float-give the Eastburn a call!
http://www.theeastburn.com/foundersfloat

Jul 082017
 

Yesterday was another MRI day. How accustomed we’ve become to these almost day long affairs at OHSU. Tom says he can nearly fall asleep in the MRI tube now except the tech warns against it as people snore and ruin the image. It was also our one year since meeting Dr. Jerry. Last year when we met he gave us cheese. This year he entered the exam room with chocolate. I can’t imagine making it through the last year without him. He pointed out all the changes in tumor grading and trials that have taken place in the last year. We are in a much better place than we were a year ago if the tumor comes back. The scan was clear by the way! ūüėäWhew! By the time of his next scan, Tom will have completed 12 cycles of his chemo. The doctors said if the next scan is clear, we can consider discontinuing the chemo and the Optune device. It’s an exciting prospect to think about.! The Optune while non-invasive, drives Tom absolutely crazy so returning to life without it would be a real gift. After holding our breath for a year+ it’s weird to be able to let it out a little bit. We are so thankful to be sitting in this position after the past year and continue to dream of a brighter future. As always thanks to you all for your support! 

Apr 042017
 

Links! Today was a good day for announcements in treatment for Glioblastomas. First, we started off with more awesome results from Novocure (Tom’s Optune device). Their stock prices surged too!

https://www.novocure.com/combination-of-optune-with-standard-of-care-chemotherapy-temozolomide-provides-landmark-five-year-survival-rates-for-newly-diagnosed-glioblastoma-patients/
Next, I got an email from the National Brain Tumor Society regarding their Defeat GBM Research Collaborative. This is one of the reasons we support NBTS. There’s a lot of GBM trials in Phase III which is pretty remarkable and a due in large part to increased awareness and funding. I felt my hope surge today along with those stock prices that something promising on the horizon. 

Potential Glioblastoma Treatments Entering The Pivotal Phase of Evaluation


Also another plug for the Portland Brain Tumor Walk on August 6. My birthday casserole cook-off fundraiser raised $1090! You all are amazing and it’s because of people like you that the above progress is being made. The organizers would like to do an upcoming feature on Team Food Baby but it would be nice to have more than two members on the team before I say yes. You don’t have to do actually do the walk to join Team Food Baby but there is a $25 fee. I know it’s a busy weekend and I wish they’d stop putting it at the same time as other big events like the MS Ride. Here’s the link to sign up!
http://www.braintumorcommunity.org/site/TR/TeamraiserEvents/PortlandBrainTumorWalk?team_id=79557&pg=team&fr_id=2880
Tom starts another round of chemo tonight. We’ve definitely been seeing him get progressively more fatigued with each round but he has still managed to work full-time and make it to his spin class. Last month he told me after his workout he couldn’t remember why he felt so tired, then he remembered he was on his chemo! We’ve also enjoyed being more social as of late and cheating a wee bit on the keto diet with birthday cake and festivities. 
As always, thanks to all of you. It means so much to have you all in this with us.

Mar 012017
 

Updates-Tom has had a cold we’ve been trying to kick for nearly two weeks now. We thought we had it licked Sunday and he worked out yesterday and felt bad again last night and today. He’s supposed to start another chemo round tomorrow night but will re-evaluate that tomorrow. His labs have been good. Somehow I’ve got to make that guy rest! Overall he has been exercising a lot and doing well prior to the cold. 
Also here’s an from a newly diagnosed GBM patient that struck a note with me today. Attitude is everything.
http://www.dallasnews.com/life/life/2017/02/22/going-like-fireworks-reporter-investigates-illness-brain-cancer-glioblastoma

Feb 022017
 

“They” never said that the week before an MRI scan is a special kind of hell. From co-workers exposing Tom to a nasty bug to a question on insurance coverage, we came into this scan more than a little frazzled. Luckily Tom didn’t get sick and the insurance got straightened out so that just left the big one.I make it a point to go to the scans to show Tom support, but also because if there is a recurrence, all the stories of others say the tech has the patient stay put and a doctor is called. I was sitting in the waiting room toward the end of the hour and the nurse who is running the MRI trial Tom was in came and sat next to me and gave me (what I interpreted as a concerned look) and asked how I was doing. I made small talk and caught her up on all things Tom and then the paranoia hit me that she was stalling until a doctor could come see us. Then she said she was hoping for a good outcome on his scan for him and left. Whew. And they let us leave. We didn’t get any early “it’s all clear” signs that we have gotten before the appt so we waited the 24 hours getting progressively more nervous. The resident checked Tom out and said he was doing great and said he was going to just now go look at the scan with the head neuro oncologist and would be back. 20 min later they finally came in with “looks good!”. Whew!!! It took them awhile because they were debating if the cavity where the tumor was had shrunk since the last scan. It takes awhile for a week of fear to leave your body but we are feeling pretty elated now. They even bumped Tom out to every 3 months for scans vs every 2 months so another good sign that things are moving in the right direction. Tonight Tom starts another round of chemo and tomorrow we see our favorite, Dr. Jerry. As always, thanks to all of you for your support and strength! I hope to have Team Food Baby up and running for this year’s Tumor walk by the end of the week!

Nov 222016
 

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. 
http://cherylbroyles-gbm.com/
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.

Nov 202016
 

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.

Nov 202016
 

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.