I think I'll hate purple for the rest of my life. Carrie had her first radiation yesterday. She is very incoherent and confused. She didn't recognize me after the radiation. She didn't recognize anyone. She asked our dad "where are my relatives?" Heartbreak.
She keeps complaining that everything looked purple. Just now she asked me to remember to ask her oncologist why everything looked purple. I'm pretty sure everything looked purple because they radiated her entire brain, including the backs of her optic nerves. When I think of the drugs they are pumping her full of, the toxic radiation and chemotherapy soon to follow--I want to punch a hole in the wall. No matter how long I live, I will never get over the grim look of sorrow on her face after the oncologist explained that this is a terminal diagnosis. There is no way to ever explain the pain in my soul to see my sister hear those words.
Carrie is completely doped up. Part of her incoherence is the drugs, part of it is the cancer in her brain fluid. Why is this happening to her? Why can't I wake up from this nightmare? Carrie is my best friend. My only friend.
Wednesday, December 29, 2010
Waiting
It's still dark here in Portland, Oregon. Even at 7:10 A.M. No sign of the sun. It was snowing a bit earlier. I'm so sick of looking at this five-story parking garage. I am and I'm not. It brings me an odd sort of comfort. I feel like this hospital room is a safe little cocoon, a limbo-land where we can hide out from The Future. I don't want to face this particular Future.
I'm waiting for the sun to come up. I'm waiting for Carrie's oncologist to make his morning visit. I'm waiting for my mom or someone to call and check in. I'm waiting for my husband and son to arrive tonight. I'm waiting, I'm waiting, I'm waiting.
I'm savoring every second I have with my sister.
One thing that is starting to really irritate me is all the pity. I'm so tired of the nurses and doctors and especially the awful "social worker." I don't want their hugs and the I'm-so-sorries. I see a secret relief on their faces. When they're saying "I'm sorry" what they mean is "I'm so fucking glad it's you in that chair and not me." And that's fair. I'd be glad too. But I don't want to hear it. To most of them, my sister is just another patient. Just another duty. It makes me sick to my stomach. The pressure from the spinal fluid has caused my sister to lose her vision. She relies on these people. I refuse to leave her alone in this hospital for more than a few minutes.
Conversely, I'm so incredibly grateful for the few nurses who actually do seem to give a shit. My favorite nurse is her day nurse, Jessica. She's loving and kind, compassionate. She seems to genuinely care about my sister. She stops and talks to me, and helped me figure out what diagnosis to write for Carrie's SSDI forms.
Good nurses are a gift from God.
I'm waiting for the sun to come up. I'm waiting for Carrie's oncologist to make his morning visit. I'm waiting for my mom or someone to call and check in. I'm waiting for my husband and son to arrive tonight. I'm waiting, I'm waiting, I'm waiting.
I'm savoring every second I have with my sister.
One thing that is starting to really irritate me is all the pity. I'm so tired of the nurses and doctors and especially the awful "social worker." I don't want their hugs and the I'm-so-sorries. I see a secret relief on their faces. When they're saying "I'm sorry" what they mean is "I'm so fucking glad it's you in that chair and not me." And that's fair. I'd be glad too. But I don't want to hear it. To most of them, my sister is just another patient. Just another duty. It makes me sick to my stomach. The pressure from the spinal fluid has caused my sister to lose her vision. She relies on these people. I refuse to leave her alone in this hospital for more than a few minutes.
Conversely, I'm so incredibly grateful for the few nurses who actually do seem to give a shit. My favorite nurse is her day nurse, Jessica. She's loving and kind, compassionate. She seems to genuinely care about my sister. She stops and talks to me, and helped me figure out what diagnosis to write for Carrie's SSDI forms.
Good nurses are a gift from God.
A lot can change in a week.
Today is Wednesday, December 29, 2010. I've lived almost a week since finding out that my older sister's breast cancer metastasized into her spine and brain fluid.
It's funny how life can change in an instant. I've always heard this but I never really started experiencing this phenomenon until I reached my late twenties. Before that, it seemed like my life was solid and heavy and it required great exertion to change my circumstances. Then--in an instant--I was pregnant. And life was never the same. But that change was good, even though it was terrifying at the time.
This change is bad. And it happened in a split second of time. It's funny, now, to think my sister's cancer may have been growing silently into her spinal fluid for months. Maybe years? We have no idea how long it's been there. She was first diagnosed with cancer in June. She started chemo right away, responded extremely well, had a mastectomy in October, and was declared cancer free. Oh the joy! Despite the nagging worry of a positive BRCA II test, we were all relieved and started breathing again.
Then came December. Carrie started throwing up and passing out. She had just started taking Tamoxifen. We all thought it caused the side affects. She stopped taking it. The vomiting got worse. She started having seizures. We knew something was wrong but every time she went to the hospital they said she was just recovering from the chemo.
Eventually the pain and headaches were unbearable. My sister wound up at a different hospital. Thank God for Good Samaritan. They did a lumbar puncture and found cancer cells. Her cancer got into her spinal column. This is the worst type of matastases. The spinal column is a separate entity and the membrane surrounding it cannot be permeated by traditional chemotherapy.
I got the call about the cancer return a week ago tomorrow. I had just taken Cole to get his picture taken with Santa. I was walking through Nordstrom and I got a text from my mom. "Are you home yet?" I knew the news must not be great because she normally just calls. I called her as I left the parking garage of Fashion Show mall. It was cancer.
When I got home, I made the mistake of reading about this cancer that was eroding my sister's spine. It was much worse than I thought. Plans were changed and I decided to fly out on Christmas day to spend the afternoon with my sister. It very possibly might be her last. I've spent almost every minute at the hospital since getting here. As I type, I am listening to my sister's precious snores. The pain on her face is almost more than I can bear.
I don't know how to get through this.
It's funny how life can change in an instant. I've always heard this but I never really started experiencing this phenomenon until I reached my late twenties. Before that, it seemed like my life was solid and heavy and it required great exertion to change my circumstances. Then--in an instant--I was pregnant. And life was never the same. But that change was good, even though it was terrifying at the time.
This change is bad. And it happened in a split second of time. It's funny, now, to think my sister's cancer may have been growing silently into her spinal fluid for months. Maybe years? We have no idea how long it's been there. She was first diagnosed with cancer in June. She started chemo right away, responded extremely well, had a mastectomy in October, and was declared cancer free. Oh the joy! Despite the nagging worry of a positive BRCA II test, we were all relieved and started breathing again.
Then came December. Carrie started throwing up and passing out. She had just started taking Tamoxifen. We all thought it caused the side affects. She stopped taking it. The vomiting got worse. She started having seizures. We knew something was wrong but every time she went to the hospital they said she was just recovering from the chemo.
Eventually the pain and headaches were unbearable. My sister wound up at a different hospital. Thank God for Good Samaritan. They did a lumbar puncture and found cancer cells. Her cancer got into her spinal column. This is the worst type of matastases. The spinal column is a separate entity and the membrane surrounding it cannot be permeated by traditional chemotherapy.
I got the call about the cancer return a week ago tomorrow. I had just taken Cole to get his picture taken with Santa. I was walking through Nordstrom and I got a text from my mom. "Are you home yet?" I knew the news must not be great because she normally just calls. I called her as I left the parking garage of Fashion Show mall. It was cancer.
When I got home, I made the mistake of reading about this cancer that was eroding my sister's spine. It was much worse than I thought. Plans were changed and I decided to fly out on Christmas day to spend the afternoon with my sister. It very possibly might be her last. I've spent almost every minute at the hospital since getting here. As I type, I am listening to my sister's precious snores. The pain on her face is almost more than I can bear.
I don't know how to get through this.
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