So it’s Sunday Funday in our house, which means Buffalo Bill’s
football! The weather is crappy; it’s
raining and 45 degrees. My poor
Floridian mother is freezing. She went
to the store to buy items to make vegetable soup.
Sunday also means general complaining about my fantasy
line-up. But today, I’m keeping that to
a minimum because today it a great good day.
I woke up pain free and other than the medicine for my stomach, steroids
and my nerve blocker, I haven’t taken a single pain med today. Less than two
weeks after surgery. Not too
shabby. The unfortunate part is that we
know that this process, with my final surgery scheduled for Thursday the 9th, is
going to have to happen all over again. But having a highly successful trail
run I think makes my outlook so much more bright and hopeful.
Most of my blogs have been written under the influence
of pain meds and I feel like I’ve repeated myself a lot. So now, with some since of clarity, there are
a few things I want to say.
I’m certainly less scared and fearful about the second
surgery. I still understand the risk, but my surgical team is amazing. Here is what is so unparalleled about
them. My neurosurgeon, Dr. Landi uses
the same exact team EVERYTIME; the PA’s, the anesthesiologist, nurses. They are
the same staff that have seen me before, so I feel so much more confident. Dr.
O’Connor (whose has been in the biz of knocking people out since 1971) actually
came to my room after my procedure to see how I was doing. I’ve never heard of any anesthesiologist
doing this.
Dr. Michael Landi at the Invision Brain and Spine center (http://www.mybrainandspine.com)
is incredible. Beyond the neurology,
they also offer massage and primary care.
I am looking into switching all my care to their office. Phone calls are returned quickly, the staff
is pleasant, the staff cares, and there is an air of holistic appreciation
which is super important to me. Not only
did Dr. Landi call me personally to tell me that both pathology reports came
back benign, his office also called to set up my appointment with the radiation
oncologist that works he recommends I work with. Let me repeat that, his office called and set
up that appointment for me. That is the
kind of care and attention that this amazing Doctor and his staff gives. I’ve never seen anything like it.
I try to have no regrets, but I regret that I waited the
three months that other neurosurgeons recommended to see “what was happening” before
getting so frustrated that I started seeking second/third/fourth opinions. That was my fault. Nothing may have changed
in the timeline of my care, but the sheer comfort and calm that I could have had
over those three months would have been nice.
If you feel like a number, you probably are. The biggest lesson I learned when it comes to
your medical care, SPEAK UP. You are the
patient. You have insurance and medical
coverage; you’re in control; you have rights.
I recommend not acting like an idiot and requesting what you deserve with
love and respect, but make sure that those taking care of you know that you won’t
be silent either.
I also cannot say enough wonderful things about the entire
staff and experience at Kenmore Mercy Hospital.
I spent my life in and out of hospitals watching the care my father received
(granted his was of the VA variety). But
anything and everything I needed, I was given complete TLC. To feel so safe and comfortable at such a
scary time was priceless. I will never
go to another hospital in this area if I can avoid it. I can’t say enough amazing
things about the nurses and assistants. Also,
their salmon with the lemon dill sauce is the bomb. I wanted to get discharged a few hours later
just so I could order it again.
I also want to give a few other notes of appreciation. When I first started having the numbness in
my hand, I went to several chiropractors. After little relief, the owner of Cortese
Construction (my day job) desperately urged me to see his chiropractor Dr. John
Akiki (he’s based out of Clarence). After meeting with me, Dr. Akiki said he
just knew something was off. He told me I knew my body too well. Yes, all signs pointed toward a pinch nerve,
but he said that after years of practice, his gut told his there was more too
it. It was his connections to another
doctor that ordered the MRI that got this entire process started. I mention this because he was right, I KNOW
MY BODY. We all know are body. What I’ve
never mentioned in all of this was that had Dr. Akiki not trusted his instinct,
which was in some respect trusting my instinct, had he just continued to adjust
me. He actually listened to me. That was huge. If he had continued to treat
the symptoms as a pinch nerve as the other chiropractors had, my situation could
have been a lot worse.
There are few other people I want to thank, because they
deserve it.
To the folks that have visited my giveforward campaign, you
have no idea how much calm and safety you have given me. To feel that I have people willing to help in
that manner is huge. Thank you. You know who you are and your generosity is
not without complete and total love and respect.
My dear friend, Kim Cote (who I met in high school in
Raleigh NC and oddly relocated to Buffalo a few years ago) has been kind in bringing
over some great alkaline food to help feed me.
It’s a diet I want to get more into and perhaps we may have sparked some
ideas in the process. I am a sugar eater
and have to change my diet. This was a
sign. My body is rebelling. And I got lucky it didn’t rebel harder. But beyond her generous food and excellent
selection of reading material (Rolling Stone and National Geographic –proof
that sometimes kindred souls just know each other), she has been a beacon of
light that makes the room light up when she enters it.
Laura Holthouse, one of the host at Carrabba’s (my second
job) generously brought a snack basket during my surgery as my family sat in
waiting. That simple gesture was a reminder to me of the kind of people we should all be. It was simple, but it was huge. And it's those types of times when folks need the simple little things.
Amongst my Phamily – Joe McGee and Mike Savage both held pin
auctions to help raise money for my surgical fund. In addition, Rocky Carlson and Rebecca
Hubbish sent me amazing wook boxes full of fun Phish stuff that not only made
me smile but made me remember that despite my friends and family, I have an
entire support network of Phamily, some of whom I’ve never even met, that just
simply care. My eagerness to pay it
forward is intense. But I know to do it
right, I must get right with me first and then grow and help from that new
place.
UPDATE- I totally forgot to thank my dear friend (and reason for moving to Buffalo) Rob Chesbro. Rob has some health issues of his own that makes traveling and working difficult sometimes and he took the time to come visit me. And he brought me the most delicious lemon cake ever, which I ate in it's entirety while he was still there (dang steroids). Rob and I have had a lot of health related conversations over the last few months and even his girlfriend has offered to give her help (she works in social work.) I feel horrible that I left out a genuine thanks to him when I wrote this blog. You often wonder why you met certain people. I know for a fact that I met him so that I would be here in Buffalo. Buffalo has been the best place I have ever lived and no matter where I was born or no matter where else I may go, Buffalo will always be my adopted home. We had a moment before he left my apartment where we both acknowledged that now, we get it. I sat at his poker table at SKC for a reason. Its just interesting how sometimes it takes a few years to truly realize the impact someone has on your life. And that is a truth that I am glad he has helped me to learn.
UPDATE- I totally forgot to thank my dear friend (and reason for moving to Buffalo) Rob Chesbro. Rob has some health issues of his own that makes traveling and working difficult sometimes and he took the time to come visit me. And he brought me the most delicious lemon cake ever, which I ate in it's entirety while he was still there (dang steroids). Rob and I have had a lot of health related conversations over the last few months and even his girlfriend has offered to give her help (she works in social work.) I feel horrible that I left out a genuine thanks to him when I wrote this blog. You often wonder why you met certain people. I know for a fact that I met him so that I would be here in Buffalo. Buffalo has been the best place I have ever lived and no matter where I was born or no matter where else I may go, Buffalo will always be my adopted home. We had a moment before he left my apartment where we both acknowledged that now, we get it. I sat at his poker table at SKC for a reason. Its just interesting how sometimes it takes a few years to truly realize the impact someone has on your life. And that is a truth that I am glad he has helped me to learn.
I cannot say this enough. I have learned the most important lesson
of my life over the last 6 months. LEARN
YOUR BODY. Every inch of it. I knew for a good year that something was
wrong. My body felt off, but without
insurance, I was stuck. If you think something isn’t right, fight for
it. Get multiple opinions. Do your research and don’t be afraid to ask
questions. Once the numbness in my hand
started, I knew that the adjustments were no longer a good idea, despite what I
was told. One more adjustment could have
paralyzed me or worse based on what was inside my body.
My case is rare. My
type of tumor, a pilocytic astrocytoma, is super rare. It’s generally a slow growing brain tumor
found in children. In adults, it’s
usually far more aggressive. I have
looked for reason as to why I got “lucky”. Why my cervical spine? Why is it benign? Perhaps
my Peter Pan complex of never truly growing up confused my body and the tumor
was befuddled thinking it was simply growing inside a sixteen year old. Perhaps, it’s a reminder that at about twenty
years, I had plans and I strayed from those plans. Perhaps it’s a reminder that
now that “I’m back on the train”, it’s time to use my light, love and energy to
do what’s in my heart.
Sometime, I think people forget who I really am. Sure you may see the tattoos and the sarcastic
humor and think that I’m some tough chic who just lets it all roll, but the
truth is I am not as scary as I appear to be.
I have a very tender heart. I
like to see people smile. I like to do
things because they make others happy.
That is where my happiness comes from.
And I am starting to realize that my happiness come helping others. And it’s about time I get back to that.
So, my advice. Love
each other. Hug a stranger. Hug your
mom. Celebrate the best moments. Use the
darkness to crack open the light, only you can find it. Thank the people the deserve it. Thank the people that may not deserve (just
so they know what it feels like). SPREAD
the love. Your life isn’t nearly as hard
as you think it is. You are beautiful.
And listen to this song. Seriously listen to it. It has been my daily musical reminder that it will be okay.
Thank you again for all your love,
Much Love,
Kat
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