debutaunt.com

Today. I want you to raise your voice today

Well tonight I had planned on writing my annual birthday blog. Since it's 1 am, I guess it is officially Zoe's 7th birthday. I will be writing that entry later because Zoe has earned one this year, but instead, I feel incredibly compelled to write about my friend Brenda. As she is one of you.

(a long one, but please make it to the end of this one. It's where all the important stuff is)

You see, Brenda is a long time lurker. Comments once in a while. Great sense of humor. College graduate. Fitness trainer. Beautiful 36 year old wife, mother of two gorgeous boys. Had AML and not one but two stem cell transplants after the first one relapsed. And she's totally close to my heart. A truly beloved soul.

See how pretty she is... Even with the shortie hairdo (with son in a TNT race)

When you have a transplant, it's sort of like you are in a secret society. Each cancer has its own lingo and only those who have gone there know what its like. I have no idea what it is like to lose a breast. But they may not know what it's like to need blood and cells to live. Others such as family and caretakers understand "the process," but no one else really gets the 'shoppin in the grocery store with diarrhea cramps from too much magnesium' feeling.

Is it mag or is it just typical nausea? Where's the can? How soon could I get home? Should I go here? No choice. Should I go? Or will it be too horrible to bear? Will I barf at the same time? What did I eat? Damnit! What things are easiest to throw up? Wait!! Why am I in a grocery store in the first place? I forgot the coupon for the organic yogurt. There are sooo many germs here. Didn't you watch that 60 Minutes on how there were more germs on a grocery cart handle than a urinal in a NYC bus station? I just want to go home to bed and watch another episode of Law and Order. Oprah take me away.

Other things like: Which meds relieve neuropathy best? Which lotions are too greasy and hot (yep, y'all know the one - that crap the doctors prescribe) How long did it take your hair to grow back? What are your white counts? How far out are you? Allo or Auto? Who was your donor? Do you have any blasts? How many friends of yours have died? Are you as afraid as I am?

We all talk in this secret code like spies. Dx, GVHD, platelets, meds, CLL, AML, ALL, -5, rounds, TBI, and the acronym list goes on. Yes it is easily researchable to understand the language. But it's not the same. Although while personally I have always thought it is much harder on your loved ones than it is on you, I really think we are like battered soldiers. In a war that no one wants to be in. And sadly in a war with battles more lost than won. Everyone has either been in or knows someone who has fought in this war. War sucks.

Cancer is an enemy that just when you think you are in the clear, you're dead. Or when you seem to figure out the rules, they change... Have leukemia and now in remission a few years, well guess what? Now you've got lymphomabreastskincolonmyelomabrainliverlungcancer. Every headache might be a tumor. Every virus fungus bacteria could be your death. Your OCD makes Monk look like a pansy. It doesn't feel normal to be afraid of dry eyes, fevers and rashes. No one else really cares that much unless they are in the midst of the war.

The side effects are the collateral damage of the war. The meds are the necessary evil. They save your life, but they are also the weapons of mass destruction. Your entire body feels like a science experiment. Everything is blamed on your meds. Especially if you are on steroids. From abnormal paps to high blood sugars to bluuuuuurrrreeeedddd vision, it's always the steroids. And they are super calm when they tell you that, but in the back of your mind you are reminded of x person who relapsed, or y person who relapsed or someone who got the dreaded secondary cancer. To me it's like all those talking heads on tv discussing the current Iraq war while our soldiers are getting their asses shot at.

And you think to yourself, did I do the right thing? Did I go through all of this just to live my life analyzing every part of my being forever? Am I just doomed to trade one deadly disease for another?

I know it goes away. My (s)hero is a transplant nurse at MD Anderson. She's 17 years out. I know there are others who go about and live their lives and we don't hear about them often. And I'm glad. I like to think about those people.

Some say to me, "oh, don't dwell on it so much." or "don't define yourself by your disease." "don't talk about it so much." I don't think it is dwelling if you are currently in the midst of it. If you have a daily reminder when you swallow nearly 40 pills a day. Or you ignore the headache you have because they finally figured out that it is just a side effect of the meds. Or when you see more friends die. Or get sick or sicker. You are still in the midst.

And I'm not defining myself by my disease. I no longer have one. The only things I define myself by are as Zoe's mother, a debu_family member, a Catholic, and a dorktastic writer. I have other attributes, but when I think of me, it's not something I think about as being who I truly am.

And why shouldn't I talk about it? Just today I stopped by a shop to get a soda and met the owner who said he will help me fundraise. If I can convince someone to donate blood, hey... I may have saved a life. Or if I have talked someone into signing up on the bone marrow registry, well then, maybe I saved your sister's life. I don't think of myself as some type of cancer crusader. I'm just passing on my blessings. Because I feel grateful to be here and would love to help someone else win the war. I would love to contribute to finding a cure. I would think it's sort of an obligation. I am indebted to all those who loved, supported and healed me. I owe it to them. To you. And to that one person that just might make it from your donation - whatever it may be.

Fuck cancer. No **'s to cover that curse word up. There's nothing good about it. I bet even the greatest oncologists in the world wish they were out of a job.

Tonight I talked to Brenda. She is one of the fewer than 5% that have graft vs host of her lungs. Her doctors have been trying all kinds of medication to bring it under control (so far nothing), but she basically is gasping for each breath. Her heart is racing and she can barely walk a step. Her two boys, ages 10 and 7, had a family meeting tonight to learn about death. Then Brenda's doctors discussed "end of life" arrangements with her and told her "two months" is too long to suffer like she is.

I'm sorry, but jiggafuckwhat?

Bren is my soul sister. She's an Uma girl if I ever met one. And she's fighting like pre-freak Mike Tyson. If anyone could be willed to just live, it would be her. I want her to live so much. We all do.

I cannot imagine the internal fight to want to live with the complete betrayal of your body to slowly kill you. We are talking about a chick who at one time had six pack abs and runs marathons and triathalons and stuff. Someone who is familiar with the inside of a gym and vibrantly full of life.

So today. Brenda. You can do this.

We are with you. And always will be. Holding your hand. Watching over you and praying for you. Comforting you. Don't be afraid. Be calm. Fight like Uma. Stealth. Be focused. Heal your lungs. Heal your spirit. I will be here for you.

I mean someone has to make you crack a smile over a diarrhea joke once in a while.

So today. Zoe's 7th birthday. Your assignment today is just damn deadly serious. You know how you all get those emails from friends or relatives or co-workers. Jokes or stories or send this or you will have bad luck or catch herpes or sneeze for five years. The crapmail. Well today I want you to make a difference. I want you to send a link to this post to your email lists. I want you to ask your friends to give.

And (damn I'm demanding) I want them (and you) to give money. Because Brenda is that 5% that no one in this entire world knows what to do with to save her life. And the only way they can find out is to research. And be heard. Loudly. Fuck Cancer. Stop taking our loved ones.

I don't care if you donate a dollar or ten million. You all have been generous more than I ever imagined before. Seriously, those one dollars add up super fast. (click other and type in 1.00)

But just for today I want Brenda to hear us. I want the whole world to hear us.

I love you B. We can do this.

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Posted by debutaunt at March 20, 2007 12:59 AM