Day One Radiation

​Well first Chemo and Radiation done. Other than a slightly queasy stomach that could be from not eating for 5 hours I feel fine. The mask is kind of a pain. Very tight and hurts my scar a bit. Will try and get a picture tomorrow. It is a creepy feeling being locked in place with a cage around your face and then some big machine blasting radiation at your head. I cannot see as the mask prevents me from opening my eyes. I sure hope I don’t get a cold. I cannot breathe out my mouth as well. I hope they let me have the mask when this is all done. 

1 down 29 to go! Then hopefully this little bastard will be dead.

Day 2 – All Trails Challenge

So today we went out and did a little loop on the Wildwood connecting from Trillium trail and going back to trail head via Springville Road.  It was a perfect temp in the upper 60’s and we saw 15 dogs on trail and lots of runners.  According to the Forest Park map we got for signing up for the All Trails Challenge we did 4.72 miles.

Day1 – About 2 miles in around an hour

Day 2 – 4.79 miles in 1 hour 47 minutes

Total – 6.79 of 80 miles completed so about 8% done.

Total Dog Count: 15

Total Time: 2 Hours 47 Minutes

The Intrepid hikers – The First Intersection – Local Fungi – the gratuitous slug shot – and a woodpeckers delight….0704161223

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Whoo hoo. No more MRIs for a while

​Wow last day of the three day MRI marathon. Glad that is done you don’t think laying in a giant tube is much of a big deal but it sure gets old after the third day. At least no IVs today!

I am participating in a study that is using a drug for anemia as a contrast agent. It is supposed to help identify tumor cells after surgery and radiation treatment as the area is often inflamed so it is hard to tell if tumor is regrowing or is it just swollen. I will have three more scans after radiation. Then some more a few months down the road. Pretty cool to be apart of something that is being developed here at OHSU. 

You get plenty of time to think when you are laying in a loud machine for an hour. All this amazing equipment and people helping to keep you alive. Makes you think about your career choices and “what have I done to contribute to society in a meaningful way” plus how the hell does an MRI work. Damn there are some wicked smart people out there. 

Good Talk Today

So this whole tumor thing and the internet sucks. Just google glioblastoma (GBM) and average life span and you might want to start shopping for a casket. I had not spoken to any of my Doctors about my “odds” just because it is a pretty difficult conversation. And I sorta did not want to know. Well we had a great conversation with my Radiation Oncologist Dr Jerry Joboin and he said I am not a typical GBM patient. I have everything positive I can hope for AND it might not be a full blown GBM. That is extremely positive and may indicate we caught it early or during a transformation from a lower grade tumor to the higher grade. He was very encouraging and said I would be a desirable candidate on almost any trial. When you hear your chances are more in the 5-6 year range and that is because the technology has not been around long enough to have results better than that it is a good start. Plus the amount of research and technology is booming so often the best defense is just being around long enough for the next breakthrough to occur. It is very uplifting knowing you have someone in your corner like that. I actually feel like I can look forward to a full life. It is still going to suck most of the time but it is a better start than the data we initially thought.

Clarification on the chemo and radiation

A quick clarification on Tom’s treatments-The chemo is a pill he will take an hour before the radiation. He will take that pill 7 days a week for 6 weeks for this round. 

The radiation is a short visit to the Beaverton campus 5 days a week for 6 weeks where they will target a small area of his brain for 10-15 min with the radiation. He’ll have to get labs done there once a week and we will meet with Dr. Jaboin every Monday after it starts. While we appreciate the offers to sit with him through the treatments, they don’t allow anyone in that radiation room for safety reasons. Thanks everyone for your continued offers of support. We are so lucky to have all of you! 

The All Trails Challenge

Today we started the all trails challenge. The goal is to hike all 80 miles of trails in Forest Park. We did about a mile of the Wildwood Trail (a popular trail that runs the length of Forest Park for 30 miles) and explored the Oregon Vietnam Veterans Memorial. It was a very pleasant evening for a walk.

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The all trails challenge is a fundraiser to help support Forest Park. If you are local think about joining our team – Team Food Baby or donate to the cause. If you are a hasher think about donating a weeks Hash Cash. As you know we run in here all the time. If you have no idea what Forest Park is you probably don’t live here.

Forest Park is a 5200 acre park right in the city of Portland filled with trails and unfortunately invasive species. The Forest Park Conservancy is a local non-profit trying to help protect and restore Forest Park. They have a 20 year plan with a wholistic view integrating Forest Park with the surrounding acreage so wildlife can move throughout the area.

Forest Park is a key contributor to making Portland an amazing place. Help keep it that way. And don’t move here. We are full.

Info on All Trails Challenge: Link

First Radiation Oncology Visit

We have a great doctor ( Jerry Jaboin ).  He focuses on research and knew about all the latest stuff we have read about on the internet.  One comment he made is that not much progress was made on brain tumors a few years back because there was no money for research.  That has changed recently and now lots of new developments are starting to happen.  He is following clinical trials closely.  His specialty is treating Glioblastomas so we feel like we are in the right hands.  Plus he is a lot of fun to talk to and as Jessie said, gave us cheese.

I was fitted with a mask to hold my head in place so they can target the tumor area.  They can shape the beam now and he feels the tumor was away from all the “vital” stuff so I should have a good treatment with very few side effects.

My first radiation treatment is scheduled for Tuesday next week.

This is NOT my mask but one I found on the internet to show what it looks like.  I will see if I can get a picture of mine.  I know they took a couple.

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I have also made it into a study using a new contrast agent in MRI’s to using Ferumoxytol on Glioblastomas to highlight the cancer cells.  Fermoxytol uses iron particles to show up differently in the tumor cells via an MRI.  This is important after treatment as the area treated can be swollen and look as a false positive for tumor regrowth.  The hope is this new view will give us a more accurate picture of the tumor blood supply and how much actual tumor there is.

And of course it would have been better if I could have had an MRI done with this new agent before surgery but we did not know it was a Glioblastoma before surgery.  Everyone thought it was an Oligo and this study is not being used on Oligo’s.

So Wed, Thur, Friday I will have MRI’s done with various contrast agents and then Chemo and Radiation starts Tuesday next week due to 4th of July being on a Monday and delaying my start one day.

So my Fireworks will be a day late this year.

Overall doing well and everyone has been so positive given my age, fitness, and how well the surgery went.  I cannot say enough how important it is to stay fit and eat healthy.  You never know when you will REALLY need that fitness to kick in.  I never would have expected that going to the gym every day would have resulted in me doing so well coping with a brain tumor.  Dr Jaboin even made a comment how well a patient he had did as he started a fitness program once he went into radiation therapy and ended up in better shape than he started in.  It is never too late to start!

Oh and Jessie and I have started on the Ketogenic Diet.  It is supposed to be beneficial to cancer treatment.  It goes completely in the opposite direction of what I normally ate as it is much higher in fat but it has a emphasis on vegetables and I can live with that.  The bulk of the diet is fat with moderate protein and little to no carbs.  I was really eating more protein with moderate carbs and little fat so maybe I will get lucky and die of heart disease in 30 years.

I would be happy with that!

Favorite doctor

In the race for favorite doc we have a winner! Meet Dr. Jerry Jaboin-the radiation oncologist. https://www.ohsu.edu/xd/health/services/providers/index.cfm?personID=3427
This guy is wicked smart, charismatic and really gives us a lot of confidence in his skill and this treatment. Plus he gave me cheese. Tom and I are going to adopt him. ❤️. Longer update later.