Join our Team! We’d love to have you! All team members receive an Official Team Food Baby T-shirt!http://www.braintumorcommunity.org/site/TR/TeamraiserEvents/NorthwestBrainTumorWalk?team_id=82390&pg=team&fr_id=3050
I forgot to update the blog with Tom’s last scan on 12/28 which was good! He is now being bumped out to scans every three months instead of two which means we live our lives three months at a time now-a big improvement. I was reminded today when he sent me this comic which so perfectly captures our journey over the last 22 months and our hopes as we look toward the future.
It’s been a good time to reflect on how lucky we’ve been and how much has changed in the last year and even last few months. It’s easy to forget the tumor from time to time now that Tom is no longer wearing the Optune device and we aren’t changing it out every night and he’s not spending his Sundays counting out all his pills for his pill container (he doesn’t take anything except vitamins now). He cut his finger pretty badly the other day and there was no concern about how it would take forever to heal as he’s not on the chemo anymore. Same for being more active-I breathe a little easier when he goes riding and we’ve gotten to be more social and slowly are spending more time in groups, even during flu season!!! I’m not screaming like a deranged maniac at my coworkers this year who refuse to stay home when they’re sick, worried that I’ll bring home a bug that could actually kill him. Seriously though people, stay home when you’re sick please!
Anyways, things are a lot better. We’re starting the year making travel plans, getting organized, recommitting to reading more, exercising more and eating better. We are sleeping pretty well these days with the exception of our pup Olive’s snoring. We wouldn’t be doing this well without the amazing group of people supporting us. Thank you all for being a part of our journey and here’s to hopefully a happy and less eventful 2018.
Lack of posts is a good thing-we are back to mountain biking, football watching, playing with our puppy and even a fantastic honeymoon in Ireland. It was a little stressful going into this scan after stopping treatment, but our fears were once again laid to rest with today’s clear MRI. Tom will meet with Dr. Jerry in another two weeks to make his final decision on putting the Optune device back on but for now he is enjoying his freedom. He also gets to stop his Keppra (never had a seizure), so his only meds will be vitamins which is a HUGE change from a year ago. Check out that hair coming back! Cheers!
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!
Just over a year ago I was diagnosed with a Glioblastoma (GBM) one of the worst primary brain tumors you can have. As anyone with some form of cancer can tell you, receiving the news elicits a whole range of emotions. While my fiancé and I were shocked and saddened we quickly realized education was the key to dealing with this new obstacle in our lives. We threw ourselves into learning about brain tumors (and cancer in general), modern western treatments, and adjuvant care that might not be as accepted in today’s oncology departments. We quickly realized this task can be overwhelming and lead you down some dark holes.
When presented with a life altering disease many people realize research is key to finding solutions to their specific ailment. Through our research we came across the National Brain Tumor Society (NBTS) and found brain tumor research is woefully underfunded when compared to the other more well-known groups. This probably has a lot to do with the fact brain tumors are still pretty rare and people with them often don’t last long.
Portland has an annual walk as a fundraiser put on by the NBTS. We quickly mobilized a team “Team Food Baby” (it is an inside joke) and in a very short time became one of the top fundraising teams last year. This year our plan was to do even better.
Anyone who knows me can tell you I love good beer and food. Jessie and I attended almost every Beer Belly dinner The EastBurn had over the course of 5 years. Beer Belly Dinners are a multi course event where each course is paired with a beer from a brewery chosen for the event (great idea right?). After becoming “regulars” we became friends with the staff, owners, and chefs at the EastBurn. They are fantastic people, actively involved in their community, and with various charitable organizations. The Beer Belly dinners evolved over time and eventually became fundraisers for a charity chosen by the brewery. We thought maybe the EastBurn could do one for us so I contacted Mike and Josh at the EastBurn.
I was truly overwhelmed by their response. They felt a Beer Belly dinner was not enough and planned a whole fundraising month paired with my home town brewery No-Li. While I could ask you to donate to our team on the NTBS website (and thanks if you do), I think it would be much more fun to have a beer in honor of fighting brain cancer. The EastBurn has several events lined up kicking July off with a BBQ and a Corn Hole Tournament this Saturday July 1st from 3 to 6. Yah it is 4th of July weekend so for those of you staying close to town swing in, have some beer, BBQ and throw a bean bag around. Here is the best part:
EVERY Pint of No-Li beer sold in the month of July will send $1 to help fight brain tumors. Think of it as every No-Li beer you drink a researcher gets their grant. (that sounds better than a bell, angel, and wings)
Be sure to check the EastBurn events page throughout the month and SAVE THE DATE for the Clackamas River float on July 30th to close out the month.
I don’t think anyone with a horrible disease will ever be thankful for it but I have been truly blessed with an amazing outpouring of support and friendship over the past year. It is difficult to personally thank each one of you that has helped me in some way so just know I have appreciated every kind gesture sent my way.
If you want to get a beer and help stamp out brain cancer please let me know. I will be happy to join you at The EastBurn.
Thanks! Tom & Jessie
They really are a static point in time that we pin some value on. Birthdays are the same thing. There is no intrinsic value to have them just a way to mark time off a calendar or track progress or what I like to do, reflect on the past, present, and maybe what the future may hold.
One year ago today, the day after Memorial Day, which happened to be May 31st – so there is an argument is an anniversary the day of the week something happened or the actual date something happened… ponder that for a moment – (and I have always wanted to say this), but I digress. My anniversary could be considered today or tomorrow so I am going to pick both. So, one year ago today I pulled up to this cluster of buildings on a hill in the wee hours of dawn to pop in for a little nip and tuck of my brain. Even a year later I can remember the entire morning, the conversations (not verbatim but pretty good), the veteran pre-op nurse that gave me confidence, the transfer that put my IV in he worried me asking a bunch of questions and did not know how they normally do things (BTW that IV was uncomfortable during my entire stay), the THREE respiratory therapists I would have (that is what happens at a training hospital) and the surgical nurse with the dirty shoes. I mean seriously dude, you are going to be in surgery with my BRAIN exposed, yah I know your feet won’t be anywhere near my brain BUT get some clean or newish shoes, I am sure you are well compensated. They looked like he used them to walk through forest park to get there or uses them to mow the lawn.
While they ALL told me I would not remember any of this I sure did. I chatted with the guys about Cycle-cross as they wheeled me to surgery. The team in the room said to bring me in feet first as they wheeled me in head first so we had to back out and turn around. I wiggled off the gurney to a freezing cold stainless steel table with this red ball to rest my head on. The “don’t put him under, the table is not working” comment. Me saying, “did you reboot it” – them saying “great the patient is telling us how to fix the table.” My next comment, “is it plugged in?” as they are discussing how to replace the table with a new one, moving me to another room, where is the maintenance guy, followed by oh, it was not plugged in we are good, its working, you can knock him out now.
I wake up in recovery and feel pretty good. I am very thirsty and hungry and my fear of being attached to a breathing tube is relieved. Honestly that was my biggest worry waking up with a breathing tube jammed down my throat to have them pull it out while I was awake. They asked if I wanted to call Jessie so I did. The rest of the day was waiting to get a room, a post op MRI, a pig out on dinner, realizing my innards did not work yet, that dinner coming right back up and spending the rest of the night flowing in and out of conscious. Dilaudid gave me some wild dreams that still wig me out a bit. Personally I did not like being on that stuff.
The rest of the week continued and I never ceased to amaze everyone with how well I was doing. So now a year later and I still get that amazement but I cannot help but worry when is that amazement going to end. I try to feel, act, be, as normal as everyone else but that is just not the case anymore. There is always a reminder of this giant change in direction, no matter how I ignore it, won’t go away. As I pull into the garage I hear on OPB about the writer Brian Doyle from Lake Oswego has just passed away. He was only 60 years old. April Baer was reflecting on some interviews with him, some of his accomplishments, they even played a little reading he did back in 2010. The book he was most known for was Mink River and that is when I realize who he was. I remember that book from the Lake Oswego Reads program. it was the summer selection from 2012 and I always wanted to read that book. (Actually I think I have it and I think I started it on a trip somewhere – will have to look through the bookshelves) I was sitting in the car listening to the story about him, just as it ended the OPB lady asked April about how he died. He was diagnosed with Brain Cancer back in November and died yesterday.
So my one year anniversary gives me a lot to reflect upon. I am very thankful for all my friends and family that have helped me through this. The management at Con-way that supported my recovery so I did not have to live in fear of job issues. The amazing recovery staff at OHSU and all the people that helped support us and our Team Food Baby fundraising for the tumor walk. To my sister Dianna taking great care of me during recovery and working around our house. She was just as busy as a bee the whole time. To Jessie for being my remember all and doing the worrying for me. Plus, she had to haul me around as I still recovered from the vertigo that led to the tumor discovery in the first place.
I have made new friends along the way, Dr Jerry Jaboin who provides the encouragement I need and often reminds me, I am not a normal Brain Tumor patient. Jessica Morris, another Brain Tumor Survivor that is 5 months or so ahead of me. She is showing me how to stay strong throughout this. You can check out her blog here-> https://jessicamorrisnyc.wordpress.com/ I find it interesting how the experience she had, while similar to mine, was quite different. She had music during her radiation treatments but we both visualized those little tumor cells getting zapped.
While I have no idea what my “expected” life expectancy is anymore I know I have gone beyond the “google GBM life expectancy” search. (EDIT: that is no longer true, last year it was 7.9 months, now it looks like 14.6 months so I have some time before that anniversary). My plan is to have MANY more May 31st anniversaries, 9/9/2017 anniversaries, 12/5 anniversaries, 3/23 anniversaries….
you get the point
So on my first anniversary of an amazingly successful surgery I cannot wait to write about my second anniversary and how thankful I am!