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!
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!