Monday, May 02, 2005

The Tip of the Iceberg

Originally uploaded by lilmissimpatient.
This weekend I went home to see my family. It was bittersweet. It was wonderful, as always, to see everyone, I miss my family more and more everyday. Mom showed me all the new things she bought, and then drove me around to show me all the new things she's going to buy. I teased her about breaking the bank on her new motorcycle hobby, but she says she's just making sure that she enjoys all the time she has left.

My mother told me this weekend in no uncertain terms that she's dying. To look at her, from a stranger's point of view anyway, you may not get much argument. Her lips are cracked and blistered, white in color. Her skin tone, which used to be a deep Mediterranean olive, is now ashy gray, with patches of mottled purple and red, like a deep bruise that never goes away. The skin itself is like paper, like touching a very old cloth doll - it seems like at any moment the skin could tear and break away from the flesh underneath. Her gums have receded, leaving her smile toothy and open, like a skeleton, and her eyes have a foggy coating like cataracts on an old hound.

But still, she fights. She fought hard for the last two years. She says she's tired. She's tired of being sick, tired of fighting to be well, tired of willing her body to do something it won't.

When she was diagnosed with CML in summer of '03, her white cell count was so high that the hospital couldn't dilute the blood enough to get an accurate reading. The suspected somewhere between 300,000 and 675,000; Normal is 3-10,000, just so you get the idea. It was like having a fever of 6655.5 degrees. Her body was in crisis, and shutting down.

But modern medicine is really a miracle. Within a week and a half, her white cells were manageable, and for the time being, her chemotherapy pill had no ill side effects. Gleevec, a new drug kept it under control. It was a craps shoot, it could have helped her, or it could have made it worse. It bought her enough time to prepare herself mentally and physically for the bone marrow transplant.

But I don't think anything could prepare anybody for a bone marrow transplant. They drilled holes into her bones and sucked out the insides, to test for the concentrations of leukemia cells in the marrow, where the cells are made. They locked her in a room that was isolated from everyone, no windows, three doors, and a small bathroom. To get into the room, you first walked into a containment area. It was a small 4x6 room, and it was hotter than hell. Here, you stepped into surgical booties, a scrub gown, latex gloves, a bonnet hat, and a surgeon's mask. Once the room pressurized, the door to her room would unlock and you could enter. The room was dark, and had an unsettling antiseptic smell. She had two IV poles, each held up to 8 bags of fluids, and both racks were full, 16 wires flowing into gaping holes in her chest. You could see the tubing under her skin, running like veins up her neck, across her chest, directly to the arteries that fed her heart. We couldn't touch her for months. Just sit silently, watching her struggle to breathe, struggle to move, unable to speak, but she survived.

She had chemotherapy everyday for a month, and 2 hours of full body radiation twice a day for several weeks. The radiation caused her skin to die and turn black, eventually peeling away like charred ashes, revealing tender pink skin beneath. She lost every hair on every inch of her body. But she survived. She was lucky enough to have a match to her marrow, and she survived.

They brought her within inches of her life. More than once, the hospital in Philadelphia called in the middle of the night, telling my father "You might want to come down here, this isn't looking good." And he'd rush off, into the black of night; we could hear the tires of his SUV screeching to accelerate under the weight of his foot. It was nights like that when 40 miles to Philadelphia seemed like a cross-country trek.

They sent her home just before Christmas. She was small, and bald, and still toting an IV pole, but she was home. She had 43 different pills to take everyday, and 6 hours of IV medication, but she was home, and she was alive, and for a while, it felt like a Christmas Miracle. Mom was home.

Things got progressively better. She had serious cases of Graft vs. Host, a vicious disease that affects those who have had bone marrow transplants. When a person receives a transplant, say a liver, there is a possibility that the body will reject the liver, and it will refuse to nourish it, and the new liver will die. When a person receives a bone marrow transplant, the marrow will reject the new body, and refuse to nourish it. There is medication that can control it, but only to a certain extent. She is immuno-supressed. She has the immune system of someone in the advanced stages of AIDS. Chicken Pox, Mono, the flu, Pneumonia; any of those things can kill her. If she cuts her finger while chopping vegetables for dinner, the chance of infection forming is mind-boggling. But she had been two years without anything like that happening. The Graft vs. Host is creeping up though. Her body is killing itself. The marrow that saved her life is slowly tearing away at everything she is. The sores on her lips, the ashy color of her skin, it's her body killing itself.

The doctor, Selina Luger, a leader in her field, says it's a matter of time. A good time, several years, but a matter of time none the less. Someday, the marrow will settle in on attacking a vital organ, and there won't be anything they can do to counteract this.

So who knew? Who knew that the poison they pumped into her for months, and the radiation they shot at her, the drilling for bone marrow, the injections, the tests, the pain, and the sorrow, the dances we did when we found out she was coming home to us, and again when we found out she was in remission...who knew that all of that was just the tip of the iceberg?


Mike said...


lauren e said...

love to you and your so sorry that you are all having to go through this, casey. what an amazing woman your mother is, to be so strong and still be fighting....on a motorcycle! just by knowing you i know the kind of spark and life your mother must have in her...i bet your family is great. :)
i am keeping all of you in my prayers...if you ever need me, i am always here for you.