Tom’s scan was clear today and he gets to take a break from chemo! Cheers everyone!!!
Team Food Baby raised $4051 this year! Thank you so much to everyone who donated, walked and supported us this year. Huge thanks again to EastBurn and Founders for your incredible generosity. Increasing funding for research is the only way we will get to a cure. Thank you all from the bottom of our hearts.
One week until the Portland Brain Tumor Walk! Still plenty of time to donate or walk with us! You can even join the team as a virtual member and sleep in! My heart goes out to John McCain and his family. A glioblastoma diagnosis is a sock to the gut no matter what face you put on after. His diagnosis brought back a lot of unpleasant memories from Tom’s diagnosis. It’s hard to hear the news bleating over and over again-14 months median survival. Tom smashes through his 14 months tomorrow. We want to live in a world where everyone who receives this diagnosis lives well beyond this prognosis. Will you join us?http://www.braintumorcommunity.org/site/TR/TeamraiserEvents/PortlandBrainTumorWalk?pg=team&fr_id=2880&team_id=79557
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!
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! 😊Whew! 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!
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!
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.
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!
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.
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.
Team Food Baby is back for the 2017 Portland Brain Tumor Walk on August 6. Please consider joining us or making a donation!http://www.braintumorcommunity.org/site/TR/TeamraiserEvents/PortlandBrainTumorWalk?team_id=79557&pg=team&fr_id=2880
“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!