Friday, January 16, 2009

Well, ass.

That was a waste of time. (Actually, no. It was a very pleasant trip with my dad.)

First, I was told by the appointment scheduler to arrive at the clinic at 6:30 a.m. for blood work. I bust my ass in the freezing cold to get there on time after a sleepless, anxious night. The security guard in the lobby is of no help, so I wander around before finding the clinic. The lobby is totally empty-no employees or anyone. I pace about for 25 minutes until I find someone to help me figure out what the heck I am supposed to be doing. Since I am a new patient, I have to go through registration. The registration office doesn't open until 7 a.m. Swell. So I totally had to skip out on the hotel's free breakfast (which according to my dad was pretty good) to wander aimlessly around an overheated building for a half an hour. In fact, the phlebotomy lab didn't start taking people for blood work until 7:30.

After the morning mess, things ran much more smoothly. I was seen (On time!) by one doctor who chatted with me about my medical history and did a brief examination. Then I waited for over an hour for the next doctor to come and speak with me about the clinical trials they were running.

Turns out he was Dr. Doom and Gloom. Right off the bat he tells me they don't have anything for me treatment wise. Apparently, the main excluding factor is the number of chemo treatments I've already had. It's just too many. Okay, I'm thinking, all this information was in my charts that got faxed over the the hospital days before. So I drag my butt up to Baltimore just for the docs to tell me something that could have been conveyed over the phone. Why did they need me there warming a chair to tell me this? Ugh. Frustrating.

Dr. Doom and Gloom doesn't stop there. He continues on his litany of downers by telling me that at this point I have two options: let the disease run its course and take me to the sweet by and by or roll the dice on some other experimental treatment elsewhere that may or may not work or could very well kill me. The doc seemed to be leaning towards the "Lay down and die" option because he felt there really wasn't anything more medicine had to offer based on the fact that the leukemia has been mostly unresponsive to previous treatments.

Sweet baby Moses. I haul up to Baltimore to hear bad news I could have gotten over the phone at home, then I get the All Is Lost Abandon All Hope Ye Who Enter Here speech to boot? Thanks a frakking lot people.

However, Doc D&G did suggest that if I wanted to look into the possibility of other treatment options I check out a hospital down in Houston with a pretty robust cancer program. That's what I am leaning towards right now with the support of my family. If the folks in Houston have another option, then it would mean uprooting to Texas for at least a few months.

I am certainly not ready to lay down and die quite yet. I'm not sure that the doctor understood the affect my child has on me in all of this. I don't want him to grow up thinking that his mommy didn't fight to stay alive with everything she had.

I've always said that I would be in this until the bitter end, until the doctors told me the arsenal had been stripped clean of weapons. But to actually hear that from a doctor is like getting smacked in the lips by a cast iron frying pan.

My mind has been processing all of this. I have no idea how much time I have left before the disease takes me. I don't know how much time God's given me. But I can tell you this: that time will be spend having fun, loving life, and continuing to take up the banner against my stupid zombie leukemia. Who's with me? Italic

44 comments:

Julie said...

I don't know what to say, Manda. You are the bravest person I know, and I'm praying for you every day.

Anonymous said...

Total stranger up in NYC rooting for you every day...take care, keep the faith.

TK said...

[raises fist]

Fuckin' A. I'm with you.

We're all so proud of you. You know that, right?

Anonymous said...

I say "Westward ho!", Houston or Dallas or Austin, here we come.

Hang in there.
Carol

Kirsten said...

Anonymous lurker from Canada with you 100%. Find another doctor...that one sounds like a jerk. I hope he gets a boil on his ass.
Best wishes being sent your way.

Jeremy Feist said...

Oh Manda darling, you keep fighting the good fight. Make the most of what you got, and don't go down without giving a good fight. All my prayers.

Pants said...

Good on ya for not giving up! Pretty much everyone I know is a doctor and if there's anything they've taught me it's that medicine is not an exact science, and that there's always something else you can try. My mum was told she'd probably wouldn't make it at one point, two years ago. Guess who's celebrating her 52nd birthday today, looking great and feeling fine?

Austin said...

We know not of from where we come,
Or of to where we go,
We've done our best if of the place
We are, something we know.

We know not if our passions fly
Or if our hearts will grow
We've done our best if we can say
Something of love we know.

We know not of the day we're born
Or where our lives will flow.
We've done our best if when we die
Something of life we know.

Kim said...

So with you!!!! Houston, prepare yourself - here comes the Zombie Warrior! ((BIG)) hugs sent your way. I wish I had something sage to insert here, but I don't. Know you're loved.

Stephanie S said...

You know I'm with you in whatever you do. I say "Get your butt to Houston!" Who knows, Johnny and Helen might be able to hang out with you if it's not too far.
I love you and am praying for you.

Anonymous said...

Keep up the good fight, Amanda, and know that we're cheering you on every step of the way!

The Coppedge's

Nicole said...

MD Anderson is one of the best in the world. I've lived in Houston my whole life and it never ceases to amaze me how many people come here sick and leave well. Never give up!
And maybe that doctor needs a refresher course in Bedside Manner 101.

Tamatha said...

It sounds like to keep fighting the good fight, it's off to Houston with you.

You know that you are in my thoughts.

lordhelmet said...

Count me in, for sure I'm with you. Let's go about getting your zombie-kicking ass down to Houston then!

Helly said...

What an asshat doctor, obviously missed that class on bedside manner :-/

Good luck on that trip to Houston and a huge hug for you and your boys.

Dean said...

You are our teacher now!

Houston sounds like a way to go! Let us know when you are heading down and we'll meet up with ya. We are only a few hours away in Medina, TX!

PS. Little A has one hell of a fighter for a mom and he will always know that!

rach said...

Hey Manda, I'm with the hordes who say fight this bitch with all you got. Prayers and the like sent your way!

Maria said...

If you come down to Texas, I will take you out to any restaurant you can handle - I know food is not always appealing to you. You have no idea how inspiring you are.

Anonymous said...

You are in our thoughts and prayers.

Have you considered Cancer Treatment Centers of America (www.cancercenter.com)? They offer hope and support.

Be the exceptional patient that beats the odds!!!

blackbird said...

I'm with you.

(another lurker from Canada who is pulling for you like you were family).

Onward to Houston?
Cyberhugs...

MelodyLane said...

MD Anderson is outstanding. I hope that they will have something that will help you. Word to what TK said. You are 19 kinds of awesome. Thinking of you and sending prayers.

meaux said...

I'm with you. Can't wait to see you prove Dr. Doom & Gloom abso-effing-lutely wrong!

JamieSmitten said...

Maryland doctors. What do they know?! Saddle up and head for Texas. Love you!

Chris S said...

I'm with you! You're still alive, keep on kickin'!!! We love you guys! Keep the Faith, in more ways than one!!!

Chris S

a.j.g. said...

You're in my prayers! MD Anderson is a wonderful hospital. There are several people from my town who are there now.

You are such an inspiration.

tinksgirl said...

I'm with you! Keep fighting! All my prayers and best wishes.

Anonymous said...

I'm going to join the de-lurking masses and add that I love reading your blog (and you've made me snort a cup of tea all over my computer more than once on Pajiba).
You are an insanely brilliant person, and have people down in England sending you prayers and cyber-smooshes.

Eloise (a.k.a. Squeeziee)

Nicole said...

Manda, you know I love you, admire you, and pray for you every day. That said, I used to work for a cancer research nonprofit and MD Anderson is the BEST in the country. They are miracle workers down there. Get your cowboy boots on, girl, and head on out.

Mrs-S said...

Another person delurking to tell you to keep fighting. I am sure you hear stories all the time from people, but my dad was given three months to live two years ago, and he is still going strong. No one knows.

I still feel, in a weird bloggy never met you way, that you will beat this.

You are in my thoughts!

Anonymous said...

For your complete recovery is my prayer daily. One never knows how it will come either by man's hand or God's. So, if Texas has something to offer,check it out and be open to all options.

Deborah Hubbs

hipppychick said...

Never Give Up!
Never Surrender!

(okay, so I stole that from "Galaxy Quest", its still true!)

I pray for you, Adrian and Alastair every day.
Much love.
Mariah

Anonymous said...

De-lurking to say: Right on. Glad to hear you are feeling better and kicking yucky things like UTI's right in the face.
Also, I'm from Houston, and you know that famous Texas pride...going to Texas can sure as shit heal you!

talkingbudgie said...

I'm with you!

FIGHT FIGHT FIGHT FIGHT!

Sendin' you the good zombie fightin' vibes...

Dawn said...

Screw Dr. D&G. I'm with you, prayers and all, and those zombie cells better learn to know fear...

Jen said...

Go Manders go! I am with you all the way. Keep on refusing to take no for an answer! I still believe that someone will find something that works. Love you.
Jen

Ranylt said...

Prove D&G wrong. It's in you -- as you have amply demonstrated so far.

Treena said...

Keep fighting. I got shitty odds at the start of my battle with the zombie hordes, and after over a year of treatments, baldness, diarrhea, etc., I'm seeing the sunshine out the other side, going back to work and spending time with my little girl. I hope with every fiber of my being that it will turn out the same for you. Every day is a gift, but it sounds like you already know that =)

Marissa said...

That doctor sounds like a major asshole. I'd like to tell him a thing or too. I say fight!!!

Boo said...

DAMN what a twat!

I hope this makes you even MORE determined to prove that cocksucker wrong. There is a way. There is ALWAYS a way. You just have to find that person who is just as willing to walk the path as you are.

You are, and I'm guessing have always been, someone that doesn't let a book (or a doctor with a book) tell you what you can and cannot do. So let your heart guide you. Goonies never say die.

All the love. All of it. To you.

cindy said...

You are so brave and strong, and your child is blessed to have you as his Mommy. Hang in there; we're all praying for a miracle.
Cindy

Jadine said...

"When you have come to the edge of all light that you know and are about to drop off into the darkness of the unknown, faith is knowing one of two things will happen: there will be something solid to stand on or you will be taught to fly."

Patrick Overton

Anonymous said...

Manda, I work at MD Anderson and it is an incredible hospital. The staff, the care, everything. Shoot the D&G in the ass and head down this way. We'll take care of you here in Texas! Now that's a promise! - legib

http said...

Delurking just to let you know that I'm with you. Doctors are frequently both asshats and wrong but I imagine you know that by now. You and yours are in my thoughts.

Kristin said...

You really are ridiculously brave. Been praying for you since all this stuff started and will continue.

The beautiful thing about those crazy doctors is they're always coming up with new ideas, and a lot of it works! Doctor Gloom and Doom clearly isn't on the up and up. Those folks in Houston will undoubtedly be more in tune with all the cutting edge treatments that are available.

"Trust in the Lord with all thine heart; and lean not unto thine own understanding." Proverbs 3:5. As usual, He knows a lot more than we do, right?

Wishing you all the luck, faith, strength, and grace in the world...

Blog Archive