We had the 6 week surgical follow-up yesterday. It seems like there is always a surprise when we visit that office and yesterday’s surprise was that the surgical fellow we had been dealing with (Dr. Ibrahim) had finished his fellowship and was on his way back to Egypt that very day so we had a new surgical fellow who had just moved to Portland. Dr. Ibrahim was really my lifeline on surgery day and met with me twice that day post-op to go over Tom’s status and how the procedure went and attended all his rounds in the hospital. He was the doctor who ultimately had to tell us the GBM diagnosis which I can’t imagine is ever easy no matter how many times you do it. We’re really sad we didn’t get to say good-bye and he didn’t get to see how well Tom is doing and that we have not let the diagnosis slow him down. For a surgeon, he was the most compassionate one we have met to date and I think he is going to do a remarkable job wherever he ends up in his future. The new doc seemed nice but seemed a little distracted by the GBM diagnosis and felt that he needed to let us know there was still hope (duh!). He did remark that the incision site is very well healed and the incision area has firmed up. We asked about biking and honestly this doc isn’t tremendously athletic so I don’t think he “gets it” but said he could do it as long as he is careful and there is always going to be the risk of trauma to the site. He also re-iterated that the most recent MRIs show no tumor regrowth at this time. We seem him again in 6 weeks as they are going to keep following him despite their work in this largely being done. We do have the scoop on another surgeon in Seattle formerly of OHSU who has had some great results with our oncologist Dr. Neuwelt as together they have an 8 yr GBM survivor and a 10 yr oligodendroglioma survivor that Tom is friends with. If there’s ever another surgery needed, we may consider him if he’s still practicing at that point. Though there’s no reason to think the current surgical team didn’t do an excellent job! 
Sunday Tom got a little too ambitious and did his hour on the stationary bike and then we did a 6 mile hike. Probably a bit much and we thought he was having some muscle spasms in arms and legs from overdoing. We saw Dr. Jerry on Monday who thought it might be electrical impulses from low magnesium levels, but his labs on Thursday showed the magnesium levels were fine (platelets and white blood count are doing great too!) so yesterday they prescribed a low-dose steroid as it could be a known and common side effect (microseizures) from the radiation causing swelling. We see Dr. Jerry again Monday and he can weigh in once he’s had the steroids for a few days. 
There’s also been an uptick in the dizziness which they are hoping the steroid will help. We are going to redouble our efforts to get in with an OHSU ENT as his ENT specialist appointment isn’t until mid August to follow-up up on the vertigo. 

Overall Tom is still doing great, a little more fatigued this week from the radiation but no signs of nausea yet. 21 treatments to go!

Do you know what’s incredible??? We have had a visitor everyday since we brought Tom home. Thank you all so much! You have no idea how much it means to us just to have visitors each day. And we LOVE when you bring your kids and pets. The biggest blessing out of this has really been getting to spend so much time with friends and loved ones. Let’s keep it going! I don’t think we have anyone scheduled for this coming Sunday going forward. No need to bring anything except your lovely selves! And since Tom is doing so great, we can definitely come to you!!!
Oncologist is this Wednesday and after discussing with him, we are likely going to go on the Ketogenic diet after this weekend at least for 28 days .It has shown to have good results with those doing chemo and radiation, particularly with brain tumors. It is pretty similar to what we eat already BUT no sugar. So we are going alcohol free after this weekend (Tom is pretty much already there). So maybe hold off on gifts of alcohol until we are drinking celebration beverages when he beats this. This is also why I cut off meal train after this week, but if I feel overwhelmed I will definitely ask! Cooking is one of the ways that Tom and I connect, so we are looking forward to getting back in the kitchen to try some new recipes. Here’s some of the books we are trying out:

The Ketogenic cookbook by Jimmy Moore and Maria Emmerich
Keto in 28 by Michelle Hogan.
If you do want to bring Tom snacks- nitrate free jerky would be a great choice!
Also huge thanks to everyone who has joined Team Food Baby and/or donated. Don’t forget to ask your employer to make a matching donation! We have already raised$1050!!!!!
I’ll be setting up a separate FB group for the walking team so we can plan a kick-off bbq with Juno screening thanks to Katy Moyes’s great idea for team to dress like characters from the movie and maybe plan a fundraiser. I’ll try to get that group together in a day or two. Here’s the link again:
http://www.braintumorcommunity.org/site/TR/TeamraiserEvents/PortlandBrainTumorWalk?team_id=78344&pg=team&fr_id=2735

I’ve been trying to upload the pic all day and it’s not working. 4.4 mile flat hike at Dry Creek Falls. (This is where you use your inagination to picture a very happy and healthy looking Tom standing in front of a waterfall with our dear friend Torgy).

Miyazaki film festival for Dianna with our nightly ritual of Tillamookies.  So far we have worked through:

My Neighbor Totoro

Ponyo

Kiki’s Delivery Service

Howl’s Moving Castle

Princess Mononoke (in progress)

We’ve also experimented with some outings for Tom with mostly good results-short errands-walk at the park and two outings to the nursery to pick out plants (thanks to Shirley!!!). Also thanks to Dianna for planting most of them already. 

Dianna has been indulging Tom in getting many of his wish list items-the other day she built his worm/compost bin and much to my chagrin, today 2000 red wigglers showed up to take residence in our garage. Can you feel my enthusiasm? :/

Another big thanks to the Meal train. You are all such incredible cooks! I am so thankful Tom is not stuck with my crummy cooking during this and it freed us up to focus on him since we don’t have to shop or cook and clean-uo is minimal. The visits really lift spirits too. We are super grateful for all of you!!!