My name is Ken. I am 49 years old. I am not married. I am looking for a wife.
Probably too late to have children, unfortunately, but
that’s fine. I am lucky to be alive. Every day is a bonus. Um,
I retired from the Navy in 2016. Took some time off and found a
new job in the Department of Justice and been there for a year and a half.
Well, back up a little bit, when I first got to the ER,
I don’t recall what time it was, but after they took care of all these kids who had broken arms
and sick and crying babies and whatnot, they got to me and they took a CAT scan and they said,
“Sir, do you want to see your CAT scan?” And I said, “Sure!” And it had a big white
blotch on it and I thought, wow, I’m not a doctor, but that doesn’t look cool.
And they said, the attending doctor in the ER, the ER doctor for the night said, “We’re gonna call,
I called the neurosurgeon, he said, just don’t you leave, don’t let him leave. He will be there at 5
o’clock or something like that. Don’t let him leave cause God forbid he falls into a comma,
it’s going to be a whole lot harder to operate on him.” And I was like, oh, ok.
So, my mom, I never left Balboa, they put me in the ward and
two days later, my mom and dad arrived and my friends started pouring in.
And so, being that it was a rare tumor, the first person we met was, rare for an adult
in my understanding, we met with the surgeon, my parents and I. And he said, “You can go get
a second opinion, but everyone’s going to tell you that it has to come out.” So, they gave me a full
resection of the tumor, a medulloblastoma in the back of my head in the cerebellum.
And, afterwards, when I was in the ICU for 10 or 12 days, that I couldn’t ask for better nurses.
You know, when I was initially diagnosed, there was no one of my age, nor of any age
that had a medulloblastoma, that was so rare. I was put in the kid ward. One time, one night,
I was spending the night there, and I had an IV that was a little loose and all the nurses,
of course, were used to dealing with children. And the nurses came over and they said,
“Are you ok?” Because they were talking like I was a child, which was understandable,
that’s what they were doing, that’s why they were so great. And they said,
“Do you think it will help if I held your hand?” And I said, “Yes, I think it would.” And it did.
Radiation is not pleasant at all. My first time I drove myself
and, well, the first time I drove myself and naturally I was throwing up. So, I said to
the doctors, there was a spare room, I said, “Do you mind if I stay here and lay down for a minute?
I can’t drive home right now?” And they said, “Sure.” Um, but eventually, I mean not eventually,
the next time I went, friends would bring me or my Navy friends would bring me.
Many years after the initial surgery, the radiation and chemotherapy,
I asked for the hospital here in DC, the Navy hospital.
I thought, well, if the Balboa surgery did me well then maybe I can do a little bit
of work here at the Navy hospital. I’m a lawyer. And so, they gave me that assignment.
So, my oncologist over there is Brett Theeler, Dr. Brett Theeler, and he is a part of this
and so he offered this opportunity to me to come to the study, which I gladly accepted.
Well, I don’t drive anymore and that was an annoying effect because of the
max dose radiation to my head damaged the optic nerve. You know, I am completely fine with this.
Not driving is a small price to pay to be alive. I don’t drive anymore because
my periphery is not as good. My eyes don’t adjust to sun and darkness quickly.
I was less concerned about me but more concerned, that
God forbid, I hit someone. And my short-term memory is not what I want it to be. My balance is
better than it’s been in a long time, but it could improve too. There’s a delayed effect, but one of
them was my voice. And I think it’s slurring a little bit and it’s not completely articulate.
I can’t say, I will never be able to say enough for all the people who looked after
me. All the Navy, my friends, my parents came out, I should mention my brothers and sisters
came out on different occasions. Without that, without the doctors I definitely would have died.
Without all of the support, I likely would have died. Probably, definitely.
If you don’t go into it strong, if you don’t go into it with a positive attitude,
then I think that it will be trouble. It could be trouble either way. I am very, very,
very fortunate to be alive. I know that every single day I am blessed to be here. Even today.
Learn more at: cancer.gov/nci-connect. Contact us: nciconnect@mail.nih.gov – (240) 760-6530.
U.S. Department of Health & Human Services – National Institutes of
Health – National Cancer Institute. cancer.gov. 1-800-4-CANCER. Produced December 2020.