Title: "Tonya's 2nd Update"
Description: This is the 2nd email I sent out updating people on my tumor.
Date written: March 23, 2002
Hello my beloved family and friends,
First of all I want to make something clear, the point of these group
emails is not to talk about myself with all of you. I really don't
like talking about personal stuff like this. However, when I have new
info I'd rather you hear it from me than someone else. And I know that
gossip will spread, especially back home (midwest home).
I came home for my spring break solely because I had to have my second
MRI scan and other consultations with my doctors in Kansas City. My
MRI came back basically the same as the first one did. This was good
news. If my tumor had grown or changed, then I would of needed to have
the surgery immediately. This would have resulted in me missing school.
That would not have been good at all. I talked over my medication and
current state with my neurologist. The meds that I was on were keeping
me awake until 5 or 6 in the morning and they really weren't taking my
headaches away. I also had been having some trouble with my right arm.
It goes completely numb sometimes. Well, she made me do an EEG test to
measure my brainwaves. This would tell whether or not there was
seizure activity going on in my brain. The result was yes, there is
seizure activity throughout the left side of my brain. The focal
seizures (as she called them) happened only for a few seconds. This was
what I was experiencing in my right arm. With that new information, my
neurologist put me on a high dosage of seizure medication, which are
supposed to help in preventing my headaches. They have yet to become
effective though, and I still cannot sleep.
That same day I had a consultation with my neurosurgeon. He is a
wonderful man I must say straight off. He treated me like an adult, and
I am extremely confident that he will perform my surgery to the utmost
perfection. Ok, so he explained that my tumor is still assumed to be a
meningioma, which is basically a 'healthy' tumor. It is almost always
non-cancerous, and is very easy to take out. My doc also said that my
tumor could be a glioma. This type is a little more tricky. He said
that it would be something I would live with forever. It isn't
necessarily fatal, but I would just always have it. He's pretty sure
it's a meningioma though. He then said that my surgery could wait
(good news) until I came home this summer. Yes, I have to come home now
for the entire summer because of insufficient funds....it's a bitch to
be poor! We decided to have the surgery about two days after I come
home, that way it would get done and over with.
We then proceeded to talk about exactly what would go on during the surgery.
He informed me that I might have to stay awake during the operation,
which is very common in brain surgery. Since my tumor is very close to
the stem that controls the right side of my body, he would have me be
awake only so that I could talk to him and make sure that whatever he
was touching or 'cutting' close to the tumor was not affecting the
functioning of my right arm or my speech on the right side.....you get
the idea. I hope that made sense. It freaks me out to think I might
have to be awake, however, they assured me it wasn't the same kind of
awake. I am on 'happy' drugs and I probably won't remember anything
afterwards.
Next he explained step by step the surgery. First I would be admitted a
day or two before the surgery to get prepped. I would go through a
series of tests(another MRI to make sure that everything was still the
same, a test that will pin-point exactly where the tumor is so he knows
right where to go, and finally a test to try to tell if my tumor is a
meningioma or a glioma). Surgery time.....first he will shave a
portion of my hair off on the left side, going up and down. It will be
easier to hide that way I guess. He said that it wouldn't be very much
hair, but when he showed me the measurements with his hands.....let me
tell you...it's A LOT of hair....I'm worried about that! Then he will
cut open the shaved section of my scalp. Next he will take a drill and
make a hole in my skull. The drill is automatically programmed to stop
once it hits the soft, leathery covering of my brain. Then, my doc
will cut around the drilled hole and take a section of my skull out.
He'll then take out the tumor, put the piece of skull back, stitch me
up, and that will be the end of it! I will probably be in the hospital
for about 3 days depending on how the surgery goes. If the
tumor 'sticks' and isn't easily removed, then the surgery will be
more 'rough', meaning that I might have to stay longer in the hospital
for rehab and strength training to get my right side caught back up to
my left.
Oh, I also discussed the possibility of getting my surgery recorded and
my surgeon has agreed to do it. So pretty much the whole surgery will
be on tape if you'd like to see it. Fun stuff....oh yes.
Well, that's about it for now. If this email was confusing or anything
just ask and I will try to go into more detail for you, however, I
think I was pretty straight forward. Again, I'm not trying to brag and
use this as an excuse to talk about myself. You didn't have to read
the email if you really thought I was doing that. =) Talk to you all
later!
Love,
Tonya
Here are some of the replies I got:
From Frank Corva, a friend I met during my sophomore year at NYU:
I just want you to know that my thoughts and prayers are with you. I don't really know what to say about the whole
situation but I hope everything goes as well as it possibly can. God Bless you and keep me updated please!
withmuchluv, frankie
From Steve Sawyer, my beloved dentist who has also survived a brain tumor:
Your mother sent your latest email to us as well as a short note from
herself. I must say yours brought back a lot of memories of the
presurgery soul searching, thinking about what is important in life,
trusting in your doctor, spending lots of time on the net searching for
info on your particular type of tumor, questions - lots of questions.
Questions like - Why me? Why does this have to happen to me? What if
this happens? What if they find this? What if they have to do this? I
am a very positive person and you strike me as the same. Yet, these
sorts of questions seep in. And in my case, I at least had to face them
in my own way - I had to find out as much information as possible and be
mentally ready (or at least as much as I could be) for any scenario. It
really is a mind game - no pun intended. I truly believe our presurgery
positive attitude and outlook influences the outcome somewhat. And
secondly, our faith in our surgeon is paramount. It sounds like you
have both going for you.
As your surgery approaches and in the recovery period, you will not
believe the way people will come out of the woodwork supporting you.
You will get cards - literally hundreds of cards - some from folks you
have never heard of. And some will send multiple cards and letters.
You will also be a changed person - you may already be. Things that
were once important now will be trivial and things taken for granted
will be treasured more than you can imagine. Things like family,
friends, spare time, the smell of soil being tilled, Christmas lights,
and on and on. Speaking of on and on, I am really rambling.
I felt for you in the office the last time I saw you. First of all, you
did not feel well but I really thought that perhaps you were just
stunned since you had just found out the brain tumor news the day
before. I have been there. And I have thought of you often since that
time and will continue to do so.
Finally, at times like this, a person will look at and examine his/her
faith. And it just might surprise you what you find. Whatever you do,
don't underestimate the power of prayer; both your own and the hundreds
of folks like myself who will be remembering you.
I have rambled for long enough but spoken from the heart.
My best is with you, Tonya!
