Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Tuesday, October 21, 2008

Don't Hate the Player, Hate the Game

I’m getting depressed, the kind of depressed that may require some serious shopping. No worries, I’m not spending your donated money on anything frivolous. I’m a lucky girl who has, let’s call him a “benefactor,” who enjoys my company and likes to give me presents to make me feel better. He’s older, he’s successful. His personality is very amusing. I’m not going to tell you who he is, but I DO NOT sleep with him. I know what some of you are thinking and get your minds out of the gutter. All I can say is, don’t hate the player, hate the game.
My creatinine is going upwards (that’s a measure of kidney function). Going up is bad, it may indicate some renal problems, like failure. I like my kidneys. They’re a pretty integral part of my functioning body.
My appointment for discussing this is on Thurs. I get labs drawn at 1:45. I have a late appointment. I think my team might be concerned. I have been drinking really well. I’m going to take it up a notch. I’m going to give my kidneys a little boost.
My prograf has been tapered down, due to the concern it may be adversely effecting my kidneys.
I have concerns that I will not be coming home on Thursday. You can see how I feel about this in the posting below under “Cancer Paranoia.”
I really do think a portion of my postings are answers to questions people may have that I don’t have the courage to say. I can’t choke the words out. I can take being disappointed. It’s much more difficult to watch my friends and family on the sidelines.
It is also incredibly hard to answer all the questions that come out of everybody's mouth that you've ever met when you're diagnosed. Suddenly, you're the most popular girl and everyone wants a piece of your life.
It's incredible the boldness of some of the questions people ask. I'd like them to stick to more socially acceptable topics, like politics or prostitution, but they won't. Please upon approach try to remember the following:
I am psychologically suffering! I have been fighting cancer since I was twenty-three years old. I thought I had the world at my fingertips. I don’t like the reality that the best case scenario is that I will undergo treatment for a MINIMUM of three years, and was labeled permanently disabled at 25. I’ll be out of work until I’m at least 27, if not longer. The students who entered my graduate classes now have DEGREES. They are now nurse practitioners, living a life I don’t even fantasize about anymore, because I can’t look down the next week without seeing disappointment.
Try to keep this in mind when you see somebody you barely know in the grocery store and start barraging them with questions. I’d go to stores in disguise so I wouldn’t be recognized, but somebody would inevitably find me.
I don’t want to be rude or offensive. I want people to understand how much it hurts me to replay the same exact story a hundred times. If you want to bring it up, keep it simple and sensitive. How are you feeling? Are you having any trouble I can help with? Can you tell me, real quick, what’s going on with your treatment?
I know I’m good gossip, I’m a sad, sad story. I’m a cautionary tale of how bad life can go for no particular reason. Don’t rub it in my face so you have gossip for your friends. I’m still a person. I am not just a disease.
This really isn’t everybody, and on some days, I can handle the added pressure of talking to everyone. I do not have any problem suffering publicly. I want everybody to watch and know and understand how people in my situation feel. I’ve been embraced by so many people. I’m embracing back. I want you to know the details of my life, but this is educational.
Again, please don’t hate the player, hate the game. Use this information next time you are confronted with a similar social situation.
Here are some suggestions, courtesy of cancer planet, to fend off those question about our fancy scars:
Top 10 Responses to Nosy Questions About Scars
10. Never go to the tattoo parlor when you’re drunk
9. You think THAT’S bad, you should see the exit wound.
8. I self-mutilate. Don’t you?
7. Those damn flesh-eating bacteria are spreading, slowly but surely.
6. That’s where the government put the chip to track my movements.
5. It’s the only way to smuggle drugs these days.
4. What scar? What are you talking about? Oh my God! That’s HUGE!
3. I had to sell organs to get off the street.
2. I should have listened when Mom said not to scratch that mosquito bite.
1. That’s where my twin used to be attached.


Lina said...

Lol. your #1 reason reminds me of conjoined twins myslexia. reminds me of that episode of South Park about Nurse Gollum.

And good gossip? Hell yeah, Hill! You are the best person to gossip with and spill all my secrets. ^_^ You are still my Hillary. Screw a bottle cap on those people who don't have a bottle cap on their mouths. that's a saying in my language.

A Lil bit O' Lula said...

I just read your Dads email and I am so glad that things are looking up! Sorry about the cabin fever... here are some websites to kill a little time...

And there is always Perez Hilton ;) or

Keep smiling!