Today, we met with Chad’s radiation oncologist, just as a follow-up. I haven’t been going to these appointments since radiation ended in July. They were pretty routine; mostly going over labs. And Chad’s labs never change.
Today, though, I went.
Chad’s been having some slight issues lately, and I just wanted to be there. I had questions. And I hoped the doctor would have answers.
Let me back track a little bit.
Last week, Chad had a CT scan and a shunt series of x-rays — those are x-rays that document the entire length of the shunt; his head where it begins, his neck and upper torso, and hi abdomen where the tubing ends.
We saw the images later that day, when Chad brought home a disk to mail to Dr. Tatter in Winston-Salem at Wake Forest University Baptist Medical Center.
I could tell there was fluid, but other than that, I had no clue what we were seeing.
Today, we found out there is indeed some fluid problem. The ventricles of his brain are pretty dilated, creating pressure and intense headaches.
We also found out that there is no new tumor growth. That is fantastic news!
When we left the office today, I was dialing Dr. Tatter. I’m surprised we haven’t heard from him yet, but I full expect to hear from him on Tuesday.
Chad and I are expecting a trip to Winston-Salem in the near future, although Chad would like to put it off until his next scheduled appointment November 5. Trust me, I won’t be able to wait. If he needs to go, I will drag him there myself.
So, what symptoms is he having?
Many. Lots. And they vary; sometimes they are overwhelming. Sometimes he’s only aware of their presence if I ask him about it.
Fatigue. Sever fatigue. So severe that Chad will no longer be able to work a full 40 hour work week.
He goes to bed at 9pm. He can barely scrape himself out of bed by 9am. And that’s not normal.
It’s especially hard to carry on a conversation with him after work; he’s just so drained that talking is near impossible until he’s had a nap. And even then, it’s difficult.
Intense headaches. He has tried several prescription pain killers and nothing seems to take the edge off. Talk about miserable…
Memory issues. He can, generally, remember things that happened a short time ago. But, in the last month or so, I’ve noticed that he’s having difficulties recalling things that I wouldn’t expect. And it’s not like I can jog his memory to spark it — it’s just gone.
Personality changes. In the last month, his mood has shifted. Dramatically. He’s still very unopinionated, which hasn’t changed much since the surgery in March. I’m not the only one who has noticed it either, so I know it’s not my overactive imagination.
Abdominal pain. It gets worse. Then gets better.
He had a battery of tests last month; nothing was discovered. But now it appears it could also be a shunt problem.
We know there is a shunt pressure issue; but we don’t know what it means quite yet.
So, now we wait. Again.
I’ll be sure to update when we hear from Dr. Tatter’s team.
I’ll leave you with a Good News picture.
Chad’s hair is growing back.
This was a few weeks ago, and there’s a lot more now.
We were so afraid it wouldn’t come back….and we are so thrilled that it’s growing!