Creative Loafing has a writing competition with the theme, The Meaning of Life, which got me thinking about my own life, liberty, and pursuit of a consistent double pour as well as some of the places, both physical and emotional, I have been over the past few years.
Occasionally, you will find that even the unpleasant spots you find yourself in will be helpful to someone else. (and maybe especially those tough spots)
Below is an email exchange I had with another clival chordoma patient via the chordoma online support forum.
On Wed, 1/4/12, Allison - wrote:
From: AllisonSubject: Re: [Chordoma_Support_Group] Selecting a Surgeon for Clival SurgeryTo: "Andrew Joseph"Date: Wednesday, January 4, 2012, 2:52 PM
Hi Joey -
Thanks for your email. Can you tell me a little about how you went about selecting UPMC and how difficult it was to travel afterwards? How long did you need to stay there and do you now go back there for follow up or are your scans done locally?
I am still trying to figure out how this would all work. If Dr. Gardener is my surgeon, will I also need a local neurosurgeon and ENT for follow up?
Again, if they are the best, I am willing to go but its not like Stamford and UCSF are 2nd rate institutions , you know? I want the best possible outcome but also want to keep my stress levels (which are skyrocketing right now!) manageable and feel as comfortable as I can so that I can maintain a positive outlook.
I assume yours was endonasal? Did you also have proton beam?
Thanks so much for any insights. I really appreciate it.
Allison
| Allison,
No problem at all - glad to help in any way I can. I know it's a crazy, scary process for everyone who has to do it.
I was diagnosed Nov. 2005 here in Atlanta and had my 1st surgery at Emory w/ Dr. Jeff Olson - great guy and a great doctor but, he was able to get only 30% of my Clival Chordoma thru a trans-sphenoidal surgery. Just before I was to start radiation therapy, my brother weasled my MRI into the hands of Dr. Leibsch at Mass General (if you haven't heard his name you will - world class radiation oncologist who looks at many chordoma patients).
Dr. Liebsch told me to cancel my radiation therapy until I spoke with Dr. Kassam at UPMC. I am very, very glad I followed his advice as Dr. Kassam and the MINC team were able to get all of the rest of the tumor using the expanded endo-nasal surgery.
(FYI, my 1st surgeon, Dr. Olson specifically advised against this surgery but I am certain I would not be here had I not gone thru with it).
I think Dr. Kassam was at a hospital in California after he left UPMC but I'm not sure which one - it might have been UCSF(?)
My brother and I stayed at Family House in Pittsburgh before and after surgery. It's a volunteer run hotel just down the street from the hospital and on the bus line. Accomadations were very nice and extremely affordable for patients and their families - definitely check it out if you decide to go to UPMC (and say hi to Kay at the front desk!). I think there is a link on the hospital website.
From Atlanta, Pittsburgh is a very easy and cheap flight but may be different from CA, not sure.
I have not been back to UPMC since my surgery. Kassam and crew did the surgery, got all the tumor out, and then I came back to Atlanta and began rad. therapy in August - 8 weeks, receiving 1 treatment a day. Emory is very close to my home so it was very convenient for me - the hospital is only a 5-10 minute drive so it made the every day thing much less taxing than it might have been otherwise. I have been officially cancer free since March of 2007 - they waited to make that pronouncement until I had finished all treatments and all of the swelling that might cloud the MRI had gone down. In November, just past, I had my annual MRI and remain tumor free - absolutely nothing going on inside my head.
At this point (I am 41 now - 35 when diagnosed) I am healthy and live a normal life in pretty much every way. Because the tumor smooshed my 3rd cranial nerve, my right eye does not function much at all, so I wear an eye patch to keep it covered and block the light due to over-sensitivity (but I'm told that it's very sexy and mysterious ;)
I take 3 medications every day due to pituitary damage (combined tumor, surgery, and radiation) but most days I feel fine. I have an endocrinologist at Emory that monitors my hormones and also a neurologist/radiation oncologist who checks my brain every year.
It's a scary time, I know, but remember the ancient Chinese proverb:
This too shall pass.
It's a good thing to remember when things are tough (and also when things are great.)
(I know it's probably little comfort at the moment).
On the practical side of dealing with health care, insurance, doctors, etc.:
Write everything down. Everything. Dates, times, names, numbers, advice, recommendations, file numbers, etc. Get a special note book just for this and carry it with you to every doctors appt. (if you can't write fast get a small, digital recorder - they're cheap and easy and you could have a friend or family member transcribe later)
Get a friend or family member (one who is calm and logical in stressful times) to go with you to your doctor's appt.s. You will forget things or not ask questions b/c you're freaking out.
It's normal.
Get copies of all medical records and keep them in your notebook - I got a 3 ring binder and carried it with me - if the dr I was seeing didn't have a copy of something or wanted to know when something happened, etc. I whipped open my book and there was no wait or delay.
Insurance always says "No" first - be calm and persistent. I was lucky enough to have a close friend who was familiar with insurance beauracracy and was happy to call on my behalf to poke Blue Cross with a sharp stick when they needed to approve something they had denied.
Just remember, it's part of the "game" of insurance, as aggravating as it is.
As much as you want (and need) this thing out of your head "Right f@#king now!!", remember that chordomas grow slowly over many years - you have the time to think about where you want to go and what type of treatment is right for you, and who you want to deal with as far as doctors, etc. You won't explode if you take an extra week or two to decide (obviously, I'm generalizing as to your tumor).
When things are just too damn much to deal with, get in your car, roll the windows down, and crank up Bruce Springsteen's song, "Rosalita".
By the time he gets to the part where,
"... the record company, Rosie, JUST GAVE ME A BIG ADVANCE!!!"
you will feel better and hopeful again.
It works.
Trust me.
I did this many, many times when I was sick and tired and depressed and I always went home with a better attitude than when I left.
Again, feel free to write or call any time at all. You have my cel number, use it any time you like. I'm self employed and can almost always spare a few minutes.
Yours,
|
You know playin' blindman's bluff is a little baby's game
You pick up Little Dynamite, I'm gonna pick up Little Gun
And together we're gonna go out tonight and make that highway run
You don't have to call me lieutenant Rossi and I don't want to be your son
The only lovin I'm ever gonna need's what that soft sweet little girl's done and Rosie
you're the one
Dynamite's my best friend baby, playing with a match
Little Gun's downtown in front of Woolworth's tryin' out his attitude on all the
cats
Papa's on the corner waitin' for the bus
Mama she's home in the window waitin' up for us
She'll be there in that chair when they wrestle her upstairs
'Cause you know we ain't gonna come
I ain't here on business
I'm only here for fun
And Rosie you're the one
(CHORUS)
Rosalita jump a little lighter
Senorita come sit by my fire
I just want to be your love, ain't no lie
Rosalita you're my stone desire
Jack the Rabbit and Weak Knees Willie, you know they're gonna be there
Ah, sloppy Sue and Big Bones Billie, they'll be comin' up for air
We're gonna play some pool, skip some school, act real cool
Stay out all night, it's gonna feel all right
So Rosie come out tonight, baby come out tonight
Windows are for cheaters, chimneys for the poor
Closets are for hangers, winners use the door
So use it Rosie, that's what it's there for
(CHORUS)
Now I know your mama she don't like me 'cause I play in a rock and roll band
And I know your daddy he don't dig me but he never did understand
Papa lowered the boom, he locked you in your room
I'm comin' to lend a hand
I'm comin' to liberate you, confiscate you, I want to be your man
Someday we'll look back on this and it will all seem funny
But now you're sad, your mama's mad
And your papa says he knows that I don't have any money
Tell him this is last chance to get his daughter in a fine romance
Because a record company, Rosie, just gave me a big advance
My tires were slashed and I almost crashed but the Lord had mercy
My machine she's a dud, I'm stuck in the mud somewhere in the swamps of Jersey
Hold on tight, stay up all night 'cause Rosie I'm comin' on strong
By the time we meet the morning light I will hold you in my arms
I know a pretty little place in Southern California down San Diego way
There's a little cafŽ where they play guitars all night and day
You can hear them in the back room strummin'
So hold tight baby 'cause don't you know daddy's comin'
SLOW!
Chorus
Ya ya ya ya
Hey hey hey hey hey hey hey hey hey hey hey hey hey hey hey hey hey HEY!!!
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