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!