Team food baby update!

Team Food Baby Update:We have raised an incredible $1405 for the National Brain Tumor Society! Wow!!!!!! Thanks so much to all the generous people who have donated! Can you help us get to $1500 today? There’s still plenty of time to join the walk or donate! I set up a separate group-Team Food Baby on Facebook if anyone wants to join. We are currently coordinating one of the next two weekends for a team BBQ and viewing of the movie Juno. Here’s the team link to join or donate. If you want to join the FB group for our walking team, send a request to the group. If not on FB, send me an email at jessica.kincaid1@gmail.com and I will keep you updated on team events.

http://www.braintumorcommunity.org/site/TR/TeamraiserEvents/PortlandBrainTumorWalk?team_id=78344&pg=team&fr_id=2735

Heads up for visitors!

Heads up for visitors!!! They are doing construction around our place at least for the next week so your best bet to avoid is to come in from the south on Gaarde and then turn onto 121st. Thanks to everyone who has come to see us or meet up with us! You are all wonderful and appreciated! We are pretty open in upcoming weeks so if you want to see us suggest a date or two that works for you!

Day Two – Radiation with Pictures

So day two, no big deal but I have pictures this time. Close up of me in my mask and the big old brain zapper machine.

They have lasers that are used to align my position. The panels on the left and right come out and take pictures of my head and position. They come back in and make adjustments to the table before treatment starts. Then the big machine at the top shoots me with radiation. It is pretty cool how it works. It is a beam of radiation with and aperture that adjusts as it moves around my head to block the beam. So if you aim a flashlight at the wall and had cut outs that you placed over the flashlight blocking part of the beam that is what the machine does so it can target specific areas and only hit what it needs to.

It does one pass (that only takes 30 seconds or so) then they make some adjustments and it does one more pass back. Then I am done.

I think today was maybe 15 minutes? 2 down 28 more to go!!

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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!