Waiting to get the results of an MRI is something I wouldn't wish on my worst enemy! We actually do a pretty good job of just living our lives, but they certainly creep up fast!
He had his first MRI in mid-January. This was a "baseline" MRI. He had just finished up radiation treatments, so they took an MRI as a baseline to measure any changes or growth from that point. They were actually at that time watching to make sure the infection was clearing up as well. So that baseline MRI still showed quite a bit of swelling.
He had another MRI in February, which showed improvement (because of the infection and swelling), another one in March, again showing improvement, and at that point they bumped it back to every two months. The MRI in May showed that there was very little swelling, and both the MRIs in July and Sept didn't show any signs of tumor re-growth. So at this point, almost a year out, all clean MRIs!! (To contrast, his mom had her second tumor-removal surgery six months after her diagnosis.)
And this is basically the plan for the rest of his life - watch and wait. His oncologist told us he will have MRIs every two months for about two years, then if everything still looks good at that point, they will spread them further apart. We heard of a guy 10 years out that was getting his MRIs only once a year. That seems like such a dream!!!
He usually gets his MRI on a Monday night after work, then his appointment to review the results is the following morning. I don't think much about the MRIs until about a week before. And even then, I try not to stress out about them. But I know I'm stressed because I usually get a massive headache a day or two before. We both usually sleep okay the night before (which is actually quite surprising). Jared actually said he didn't sleep much the night before this last one. But the minutes leading up to the results are almost unbearable. We've always been pretty confident that they'd be good news, but the further out he gets, the scarier it gets. It's basically the thought that the news just might turn our lives upside-down again. I would try to describe the feeling by imagining the most nervous I've ever been in my life, then multiplying it by 100.
All of his MRIs at this point have shown some shrinkage in the hole in his brain. But I don't think they expect for it to shrink much more. He will always have a hole where the tumor was.
If he does have tumor re-growth at some point, that definitely isn't good news, but we will probably look into other treatment options. It would obviously mean that what we've done didn't work and isn't going to work, so we need to find something else that might work.
At his appointment back in July, we actually received more great news! He signed a consent form to have his tumor researched as part of a study. (We weren't even aware, but apparently his tumor is being frozen somewhere!) Only six clinics in the US are conducting this study, Hunstman Cancer Institute just happens to be one of the six, and his doctor just happens to be one of the ones doing the study! His doctor told us that these types of studies have lead to big advancements in breast cancer treatments. So he obviously didn't promise anything, but made us aware of the huge benefit this could be for him in the future, considering that if they did find something that was looking promising, it would be based off of studying HIS tumor! Well, I should probably clarify that they won't just be studying his tumor, I think he said 250 tumors will be studied. But this was such great news! I had always questioned our decision to go to Huntsman versus somewhere much closer to home, and now I see that this was just another one of our blessings in disguise!
