We are two weeks officially into the Ketogenic diet today and it’s going fairly well but the carb cravings are making me a little nuts. Surprisingly not missing the alcohol much. I am down 5 lbs and the bigger victory is that Tom is not down any weight. This week I’ve traded a little variety in the meal plan for my sanity and since the recipes make 4 servings, we’re having leftovers. 🙂 I also tried my hand at ketogenic peanut butter cookies this week and they must have been edible as Tom downed 5 of them as soon as he discovered them. Most of the resources on this diet are geared toward losing weight (though it is also used to treat epilepsy and fight cancer) so we were fortunate to get a dietitian through OHSU as a resource who is helping to make sure Tom is still doing all the right things nutrition wise. The University of Michigan has a study going right now regarding this diet and Tom’s specific type of tumor (Glioblastoma) that we are reading up on.
We saw Dr. Jerry again today. Honestly that man is the weekly dose of hope that we need in our lives right now. Love him. Nothing new really except he is attending a Glioblastoma conference this week and he also said he made a list of trials that he wants to bring to Portland. If he ever moves, we are going to follow him. That’s right folks, there is definitely a restraining order in our future.
One final bit of good news. We got the results of Tom’s series of MRI’s and there is no evidence of tumor regrowth since the surgery. Big sigh of relief. He’s also doing really well so far with the chemo and radiation. 25 more treatments to go!
Monthly Archives: July 2016
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!!
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. Â It was a perfect temp in the upper 60’s and we saw 15 dogs on trail and lots of runners. Â 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….
YAY UPS….
It is always exciting to get a package from UPS. It is like Christmas. Until today. Now shit gets real.
Not something I wanted to receive from UPS – ever….
How does an MRI work?
Every time I am in an MRI machine I think google how this works when I am out of here. Generally I forget. Not today. Here is a great explanation how it works. Pretty amazing.
http://science.howstuffworks.com/mri.htm
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.