>> So I'm Barbara.
I'm the wife of a brain tumor and a glioblastoma patient.
Bob started to have kind of weird symptoms in the fall of 2014 and went to a bunch
of different practitioners, and each practitioner came back with a different answer.
And he actually had a -- went through an endarterectomy to clear plaque
from his carotid artery because they were thinking it was a stroke symptom,
and only after that, and they were getting ready to do a second one, did they finally do an MRI
with contrast and discovered that he had a brain tumor.
And we were able to get an appointment at NIH.
They were so much more positive and understanding,
because at first he was basically just given a death sentence by the initial doctors he'd seen,
and so he was accepted for treatment there and had the radiation at NIH.
We live in the DC area, so we're able to do that easily and did the standard of care
and had a very good response to that and had about three and a half years of stability
after the treatment, before he had -- the tumor came back.
He had surgery and participated in a clinical trial, and he passed away in December.
I really do think the radiation caused a lot of his initial --
he was disabled by that initial round of treatment, and he had some balance problems.
He had navigational issues where he couldn't figure out where he was,
and he had incredible crushing fatigue and he never really got over that.
His walking got very unsteady and he would lean over to one side
and it suddenly became much worse where he just couldn't -- he couldn't hold himself upright.
It was hard to convey the, you know, there really were kind of behaviors,
it's like, well, is this a symptom?
I don't know if this is a symptom.
This is like a weird behavior.
And then I always found that, again, in hindsight, that I could usually --
something that he would -- he would start to have an issue and it would not show
up on the MRI, and then two months later, it would show up on the next MRI.
And so I felt like there was evidence there that something was going on.
So he was in this clinical trial.
It was very -- it was very hard on him.
He did the treatment every couple of weeks and he would just be totally wiped
out after each treatment, in each time there was a slightly different effect.
Sometimes he had a lot of gastrointestinal issues.
Other times he was just super tired.
And it was a really -- looking back, it was a really arduous time.
And so, you know, so it's tough.
I guess we were okay at managing it.
He stayed very -- he was very committed to being physically active
and stayed very -- he had been a bicyclist.
We both were, and he did stay very active and walked as long as he could,
and then once he was -- he had been having trouble walking,
he used a bike trainer indoors so he could get exercise.
And so I think we both felt like kind of, you know, keeping up his activity as much
as he could would help him with the balance and that kind of thing.
Well, one of the first things we did after he was diagnosed was we took a MBSR class,
Mindfulness-Based Stress Reduction, and I think it really helped with the fear.
And so I think that was very helpful for both of us in living
in the moment and finding some peace.
I think, for caregivers, I think that connecting with other caregivers,
going to a cancer support center.
I was in a support group the whole time and it was really helpful.
It was just a -- it wasn't brain tumor specific, but there are --
those do exist, but finding that community, because it changes your life so much,
and people don't understand, and so having that support community, helping your loved one get
into that support -- that kind of support community is something that's really helpful,
as well as recruiting your family and friends to be aware of what's going on and helpful.
And I'm not going to say "taking care of yourself" because there's something
about phrase that always annoys me.
You're very busy taking care of the other person and you really want somebody else
to help take care of you, and so I think that that's part of what I'm -- I was looking for.
I ended up the last almost two years, I was fortunate enough to be able to work part-time
and my employer's gate was open to that, and so really taking the time, slowing things down so
that you have -- are able to do what needs to get done.
So like whatever makes you feel better, whatever new comes along, do it.
And I, oh, I have one more thing, I know.
Get a dog, but we got Axle right when he was finishing the standard of care
and it gave us something -- he gave us something to talk about
and something fun do other than cancer.
I still remember when he got him, it was like, oh, we're not actually focused
on cancer for 10 minutes, this is great.
So that's my advice, get a dog.
>> U.S. Department of Health and Human Services, National Institutes of Health,
National Cancer Institute, cancer.gov, 1-800-4-CANCER, produced August 2021.