In true Team Food Baby tradition, he did not finish last. So proud!
Another big milestone today-Tom’s return to mountain biking! I’m nervous but excited for him and this return to normalcy. It will be the longest time we’ve been apart since his surgery and the farthest distance. We bought him a new helmet last week that should be one of the safest out there. He’s been feeling really good these past few days and sleeping better now that he’s off the steroid. I know he’s in excellent hands as he’ll be going with Dr. Jerry and some of his best mountain biking buds. Take good care of my Bird you guys!!!
Tom’s finishing dayThanks to facebook memories we discovered that August 15 is an auspicious day in Tom’s life. 4 years ago today Tom finished his Supply and Logistics degree and we were out celebrating. Tonight we celebrate the finish of the end of his radiation treatment and first round of chemo. He is a fighter! He is strong. He came through this better than we ever could have expected. He is relentless in his efforts to understand this tumor and everything he can do to fight it. He didn’t wallow in pity or fatigue but rolled up his sleeves and decided to give it hell. Tonight we celebrate his victory in the first round of this war. 5 weeks off and then we prepare for the next battle. Cheers to you my love!
Tom’s sister Anita designed these awesome shirts and they surprised Tom with them at the walk today. I got one too!!! Tom’s niece Nicole and her boyfriend Ty also joined us. We are so thankful they all journeyed from Spokane for the event! Mot is Tom spelled backwards and as his mom retold it on the phone tonight he was a little boy who wrote “Mot” all over the place, walls, etc. ❤️❤️❤️
The steroid they gave Tom seems to be working and his spasms are decreasing in frequency and severity along with the dizziness, though he still has some of the dizziness. We are tentatively looking at a part-time return for him to work next week. Work in the morning-workout, then I will take him to radiation and he can rest in the afternoon.
And again, thank you to everyone who has taken the time out of their busy lives to send texts, emails, messages, cards, phone calls, presents, come to visit, brought food, stayed in hotels to see us, helped in the yard, signed up for the Tumor walk and those who have donated. More thanks to those who have driven in our crazy traffic and construction to get to us and those who have reached out across time zones. I know cancer and hospitals really aren’t most people’s cup of tea, but it really means so much and really does wonders for our spirits that so many of you have shown your support and continue to be part of our lives during all this. Big thanks to Frank Enderle and Jeff Torgerson for making weekly visits-Endo for even helping get Tom to some of his appointments when I have work conflicts and Torgy for keeping me sane. You all are so appreciated!
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!
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!
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 email@example.com and I will keep you updated on team events.