A great big Giant thank you to everyone who supported Team Food Baby this year. Between donations and fundraisers we raised $3465 this year! Our three year total is around $12,207!!!! We truly have the most incredible friends and family! We are so touched. Your donations mean a world of hope not only to Tom and I but all those fighting brain tumors. ❤️
Tom will be the survivor speaker at this Sunday’s NBTS Northwest Brain Tumor Walk. We will try to post a video following.
We’re at just over two years out. It seems like glioblastomas (GBMs) are everywhere now. From McCain to more recently a friend of a friend and a coworker’s mom. From us starting our story by searching for survivors, Tom’s story is now what other people need to hold onto hope when given this devastating diagnosis. We’re not in the clear, we never are with a GBM, but he’s beat the median and that’s something. Is it genetics? Diet? Attitude? Science doesn’t know yet. What we do know is we are here to support ANYONE going through this. I hope they know they can reach out to us for advice or just moral support. Please feel free to give our info out if you know someone going through this. A few people talked to us early on and while hard, was a help.
Also coming up-I really hope I can get Tom to post about his diet these days. Spoiler alert-it’s not keto-though we still find value in it for those in early treatment.
Sorry for the late post! We had a lot going on before Tom’s last scan. Which turned out to be great!!!! It was not without strife as the MRI machine broke the day before and we had to work with OHSU to get him to another machine and got the results immediately before we left for two weeks to Italy for a friend’s wedding.
We are so incredibly lucky right now but others are not. We hold fast to the one thing we can do which is fundraise to end this. The tumor walk is coming up fast! Please consider walking with us or donating!!!
In the book, When: The Scientific Secrets of Perfect Timing, Daniel Pink talks about temporal landmarks or some days that hold some type of significance for starting something. These days are no different from all the other days of the year but for some reason we value them as special. Yesterday was one of those days for me. Two years ago on May 31st I walked into OHSU at 6am to have them remove my brain tumor. We had no idea how life would change after that. The entire month of June was a constant series of up and down moments as we learned how serious my tumor was and how deadly it can be. Fortunately, I have an amazing set of friends and family that supported Jessie and I throughout our ordeal.
Here I am two years later having completely forgotten about this anniversary but pleasantly “celebrating” it in the best way I know how. I great bike ride with a good friend followed by dinner and wine after.
Cheers to many more of these milestones passing unbeknownst to me where I am celebrating life to the best of my ability. Life needs to be lived and not watched as it passes by. Hope to see many of you at our upcoming fundraisers for Team Food Baby and the National Brain Tumor Society!
AND if you want to get out on your bike with me, let me know, I am always of for a day on the bike.
Happy Friday! Tom’s scan was stable! This is the most relaxed we have been the week following a scan and waiting. We don’t want to take this lightly but everything has been going really well. Thanks to you all for your continued support!
So today was a little frustrating. I think we’ve touched on the point that the days leading up to Tom’s scans are really a special kind of hell full of fear and doubt. This weekend we had planned a little getaway for my bday and I thought it would be the perfect distraction before his scan and results next week. Tom texted me at work today and said that the doctors (not Dr. J) were all going on vacation and they had to move out his appointment another 3 weeks! I went into a meeting and stewed for an hour and a half and when I got out I called the doctor’s office and let them know that was completely unacceptable and also what an incredibly crappy thing that was to do to two people living with a glioblastoma diagnosis. We scheduled that appointment three months ago and I’m sure the doctor didn’t wake up today and decide to take it off but have known of their vacation for sometime and the schedulers are just now getting around to rescheduling people. I pointed out that if the tumor is back this time around, waiting another three weeks will really set us behind and really impede Tom’s chances of good outcome in the event of a recurrence. This was also a big deal for us this time moving from scans every two months to every three months. So we got in the week they get back (later in the week) and Tom will still have the actual scan next week but we will have to wait for another week for the results. I feel good going into this scan. Tom is doing great, but today’s experience really brings me to the point of this whole post. We made this blog and facebook page for several purposes:
1) to keep our friends and family up to date on Tom’s status
2) to provide hope and ideas to other tumor fighters
3) to provide support for the caregivers
4) to raise money for brain tumor research and patient support
One of the biggest lessons we have learned is that the patient and caregiver have to advocate for the patient at all times. Doctors and schedulers are busy. Yeah they may care if you live or die, but they are also busy humans trying to deal with probably more patients than they should on little sleep. At the end of the day, the quality of care we get is up to us and we can never be complacent. I’m glad Tom’s doctors are taking vacations and taking care of themselves, but this could have been planned and communicated a lot better. Waiting an extra three weeks while the most aggressive tumor currently classified is potentially multiplying like crazy in his head is not an acceptable outcome. If we had listened to the first doctor we saw at the beginning of this journey and just taken a wait and see approach, Tom likely wouldn’t be here today. We advocated for Tom and got a second opinion. We research as much as we can and ask questions and I physically block the door if all our questions are not answered so the doctor can’t escape. I’m there to take notes for him and support him when the questions get too hard to ask or the news is too heavy to absorb. I research other programs and doctors in the event that we don’t feel he is getting the care he deserves. This tumor is not ever going to catch us flat footed and we refuse to be complacent even now, while times are good.
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!