I am still in remission above and below the neck. Great. Still feel like crap though. Dr. Lee believes it is depression from the brain tumor and Peter losing his job. He prescribed an anti-depressant, but it made my chest hurt so my heart can't take it. It was a medication that was created for people with heart problems so there's nothing else. Dr. Lee is sending me to a psychiatrist to see what a specialist can do to help me.
I managed to get a non-profit to help with some of the costs of our health care (that we're paying for with Peter's unemployment), but I'm looking at about $4000 in bills this year and it's only the end of March!
We are moving out of our house in Seattle to the suburbs. We'll be living with friends, so that'll be challenging. My biggest fear is how all our cats will get along. My second biggest fear is how they will react when I hit my next set-back. People don't realize how many little set-backs there are with cancer. I tell people most of the big ones, but the little ones aren't worth mentioning. Now our friends will be witness to them too. I'm afraid they'll be overwhelmed. It's really not fair to force my issues on them, so I will do my best to keep things under wraps. If there were any other option right now I'm not sure I'd have agreed to this.
Finally, my baby girl (cat) is sick. She has a hyperthyroid. It cost us $400 to figure out what was causing her symptoms. She's on medication now and it seems to be working, but medication isn't the cure. The cure is radiation! No money for that, so we're treating the symptoms not the disease. Why does this sound familiar?
Sunday, March 29, 2009
Thursday, November 6, 2008
My Mom Would Have Cried
I cry about as much as it rains in Seattle. It's not all about saddness for whenever I am overwhelmed with any emotion it usually results in tears. I cry for our troops, for animals abused, for the suffering of people, and I've even shed a tear for trees. I also cry when I hear the National Anthem, when military planes fly overhead, and when I laugh really hard.
It is no surprise then that on Election Night I cried every time they declared a state for Barak Obama. When that moment finally arrived and Obama was officially elected President, I couldn't stop the tears despite all efforts to try. And for once, Peter didn't tease me. The sheer magnitude of that night was breath-taking, and in my world it called for tears.
The crying comes from my Mom. She didn't wear her heart on her sleeve, she held it out to show all the world. She cried over the National Anthem too, as well as the Preamble to the Constitution and the Gettysburg Address. She cried for the Little Rock Nine, for Martin Luher King, for Malcolm X, and even for Jesse Jackson when he didn't win the nomination to run for President.
When she was a little girl she was friends with a black girl and didn't understand why her mom wouldn't let her in the house. She loved sports so as a teen her best friends tended to be athletes, and some of them happened to be black. She lived in a racist little town in Eastern Washinton and one day she was spotted talking and laughing with a black boy. Her father beat her. Proper white girls didn't associate with Negros she was told, but that didn't stop her. She wanted to march on Washington D.C., but she only made it to Spokane, Washington. Still, it was one of the most memorable experiences of her life.
On Election Night she would have held my hand and cried right along with me. For an African American man with such grace and dignity and hope to be elected President of the United States of America would have filled her heart with joy and her eyes with tears.
So as that moment happened, and I was crying for my country with more pride then I have ever felt, a part of me was crying for my mom because she didn't live to see it. A part of me cried for me because I did live long enough to see it.
It is no surprise then that on Election Night I cried every time they declared a state for Barak Obama. When that moment finally arrived and Obama was officially elected President, I couldn't stop the tears despite all efforts to try. And for once, Peter didn't tease me. The sheer magnitude of that night was breath-taking, and in my world it called for tears.
The crying comes from my Mom. She didn't wear her heart on her sleeve, she held it out to show all the world. She cried over the National Anthem too, as well as the Preamble to the Constitution and the Gettysburg Address. She cried for the Little Rock Nine, for Martin Luher King, for Malcolm X, and even for Jesse Jackson when he didn't win the nomination to run for President.
When she was a little girl she was friends with a black girl and didn't understand why her mom wouldn't let her in the house. She loved sports so as a teen her best friends tended to be athletes, and some of them happened to be black. She lived in a racist little town in Eastern Washinton and one day she was spotted talking and laughing with a black boy. Her father beat her. Proper white girls didn't associate with Negros she was told, but that didn't stop her. She wanted to march on Washington D.C., but she only made it to Spokane, Washington. Still, it was one of the most memorable experiences of her life.
On Election Night she would have held my hand and cried right along with me. For an African American man with such grace and dignity and hope to be elected President of the United States of America would have filled her heart with joy and her eyes with tears.
So as that moment happened, and I was crying for my country with more pride then I have ever felt, a part of me was crying for my mom because she didn't live to see it. A part of me cried for me because I did live long enough to see it.
Wednesday, November 5, 2008
30th Birthday
I'm 30. There was a time when that was considered a long shot so I should feel grateful. What I actually feel is the same way many women feel when they turn 30...old. I don't know why that is. Why is 30 such a tragic age? My only conclusion is that it just is. I'm 30 now so that means I no longer get the shocked look when I tell people I have cancer. Cancer at 30 sucks and is still 10 years below the 'normal' margins, but it's not so far fetched as cancer at 25. I have a CT scan this week, and an MRI later in the month. I'm worried. I'm always worried but this time I just have this feeling that things aren't right. I'm so tired. I feel that mélange that I carried with me before my diagnosis and during chemo. Maybe it's just the stress of Peter maybe losing his job and our health insurance. Maybe it's my ulcer acting up again. So many maybes. I'll know more by the middle of next week. Dr. Lee doesn't like to let people wait through the weekend for results, but there was a mix-up in scheduling. It's going to be a long weekend.
Friday, September 19, 2008
Vexed
Okay, so here's my beef. Our lovely little Seattle house has a back yard, and the back yard exits onto an alley. There, in Grand Theft Auto style, is a tiny car port/garage. So far so good right?
The problem with this scenario is that anyone that happens to drive down the alley (it's a busy alley because there are businesses all along the opposite side) can dump whatever shit they want in our flower beds.
Which leads to the obvious question: Why are there flower beds in the alley?Answer: Hell if we know. There's a wooden retaining wall then about 3 feet between the wall and the fence, and the space in between is filled with dirt, and thus a flower bed (assuming one actually planted flowers there).
Currently the flower beds are EXTREMELY OVERGROWN. I was working my way to them, even started pulling down some of the evil black berry and other bad weeds that were stubbornly climbing the fence into the yard. Then I was hit with this tumor in my brain thing and that effort fell by the wayside.
But, even though it is overgrown is that a good reason for people to dump their garbage in it? The cigarettes from the people across from us are bad enough, but food bins from the sushi restaurant, milk crates from god knows where, and a discarded gutter from one of my not so kind neighbors is infuriating.
I liked the days when our garage got tagged instead of this because this requires cleaning up other people's dirty shit (not to mention a trip to the garbage transfer station, aka "the dump" to dispose of the gutter).
The problem with this scenario is that anyone that happens to drive down the alley (it's a busy alley because there are businesses all along the opposite side) can dump whatever shit they want in our flower beds.
Which leads to the obvious question: Why are there flower beds in the alley?Answer: Hell if we know. There's a wooden retaining wall then about 3 feet between the wall and the fence, and the space in between is filled with dirt, and thus a flower bed (assuming one actually planted flowers there).
Currently the flower beds are EXTREMELY OVERGROWN. I was working my way to them, even started pulling down some of the evil black berry and other bad weeds that were stubbornly climbing the fence into the yard. Then I was hit with this tumor in my brain thing and that effort fell by the wayside.
But, even though it is overgrown is that a good reason for people to dump their garbage in it? The cigarettes from the people across from us are bad enough, but food bins from the sushi restaurant, milk crates from god knows where, and a discarded gutter from one of my not so kind neighbors is infuriating.
I liked the days when our garage got tagged instead of this because this requires cleaning up other people's dirty shit (not to mention a trip to the garbage transfer station, aka "the dump" to dispose of the gutter).
Pain and Itching
September 9, 2008 I had gamma knife radiation to the spot in my brain where the tumor was. All my docs told me radiation wasn't painful, and that the contraption that would be screwed onto my head would only cause a "little pressure, and some minor discomfort." Liars!
First they gave me lidocane shots to the 4 spots on my head where the screws would go. Lidocane is what dentists use and feels like a bee sting. Then they pulled out a metal contraption that was screwed onto my head. (Check out the pictures in my "brain surgery" album.) After some measurements and scans the doctors finally came up with a plan and started the radiation.
It turns out that the location of the tumor was in an area too difficult for the gamma knife machine to make the calibrations on its own. This meant that each calibration, 9 in all, had to be done manually. It was a process that took twice as long and required twice as much manipulation (straining and pulling) of the contraption screwed to my head. By the 7th calibration, the lidocane was wearing off. I sucked it up like a trooper but relief was a long way off. Removing the contraption is normally painless, but since I was no longer numb I felt everything. Peter did his best to distract me from the discomfort, and the nurse gave me some Tylenol, but neither helped much. I was promised that I'd be given more serious pain medications as soon as I was moved to the room I was going to stay in overnight.
Dirty, filthy liars! Of course there was confusion, and nobody was sure what was going on, and the medication hadn't been ordered, and I'm fucking cursed! Peter left to move the car and by the time he got back I was crying hysterically from the pain. He did a fabulous job keeping me calm and if not for him I would have completely lost it. Finally, they gave me Toradol, but it only dulled the pain. Then my nurse gave me Vicodin on top of the Tylenol and Toradol. Things got remarkably better after that.
The rest of the night was relatively quiet and uneventful. In the morning I was given more pain med and discharged. By mid-afternoon, the pain med wore off, and I remembered that having holes in one's head is painful. I immediately rifled through my stash of meds and found one that I took after my brain surgery. Things got better after that as well…
…until Thursday when the itching started. I don't know how chemo and radiation have made me so hypersensitive to meds, but it's fucking irritating as hell. A med I took a month ago without a problem now gives my hives. Luckily, the pain isn't too bad because, when faced with the choice of pain or itching, I opted for pain. However, it's 3am, my head hurts, and I'm still so itchy that I can't sleep. If it isn't one thing, it's always another.
First they gave me lidocane shots to the 4 spots on my head where the screws would go. Lidocane is what dentists use and feels like a bee sting. Then they pulled out a metal contraption that was screwed onto my head. (Check out the pictures in my "brain surgery" album.) After some measurements and scans the doctors finally came up with a plan and started the radiation.
It turns out that the location of the tumor was in an area too difficult for the gamma knife machine to make the calibrations on its own. This meant that each calibration, 9 in all, had to be done manually. It was a process that took twice as long and required twice as much manipulation (straining and pulling) of the contraption screwed to my head. By the 7th calibration, the lidocane was wearing off. I sucked it up like a trooper but relief was a long way off. Removing the contraption is normally painless, but since I was no longer numb I felt everything. Peter did his best to distract me from the discomfort, and the nurse gave me some Tylenol, but neither helped much. I was promised that I'd be given more serious pain medications as soon as I was moved to the room I was going to stay in overnight.
Dirty, filthy liars! Of course there was confusion, and nobody was sure what was going on, and the medication hadn't been ordered, and I'm fucking cursed! Peter left to move the car and by the time he got back I was crying hysterically from the pain. He did a fabulous job keeping me calm and if not for him I would have completely lost it. Finally, they gave me Toradol, but it only dulled the pain. Then my nurse gave me Vicodin on top of the Tylenol and Toradol. Things got remarkably better after that.
The rest of the night was relatively quiet and uneventful. In the morning I was given more pain med and discharged. By mid-afternoon, the pain med wore off, and I remembered that having holes in one's head is painful. I immediately rifled through my stash of meds and found one that I took after my brain surgery. Things got better after that as well…
…until Thursday when the itching started. I don't know how chemo and radiation have made me so hypersensitive to meds, but it's fucking irritating as hell. A med I took a month ago without a problem now gives my hives. Luckily, the pain isn't too bad because, when faced with the choice of pain or itching, I opted for pain. However, it's 3am, my head hurts, and I'm still so itchy that I can't sleep. If it isn't one thing, it's always another.
Monday, August 25, 2008
The Bitch is Back
On Thursday, July 31st I boarded a bus for an eye appointment. In the parking lot at the bus station I had a seizure. I was scared because my seizures are waking seizures and this one came in the middle of the day. Turned out it wasn't my epilepsy causing the problem. The CT scan of my head done in the ER revealed a 3 cm tumor on the back of my brain. Doctors were optimistic. Just one tumor. Really clear margins. Right on the surface and in a non-vital area. Perfect candidate for surgery, so on August 11th they cut open my skull and pulled out about 99% of the tumor.
The recovery was surprisingly painless and within 4 days I was home and recovering well, at least physically. Emotionally and mentally I'm a little messed up. Brain not functioning at full capacity and I'm struggling with more than my usual amount of anxiety. Apparently, it's all very normal.
The Plan:
Despite this set back, the Herceptin has continued to keep the cancer in remission below the neck, so I'll still do that treatment every 3 weeks as usual. But what to do about my brain? In early September I will have 1 treatment of GAMMA Knife Radiation. Gamma knife is really fancy radiation that targets a specific area rather than the whole head. This is good because there is less chance that any damage will be done to the healthy parts of my brain.
The only problem is that there is no treatment at the moment to prevent more tumors from growing in the brain. They can zap it well and good but something MIGHT escape to do some damage. We already know there are some cancer cells floating around my body or they wouldn't have found a home in my head in the first place.
So I'm on permanent wait and see. Every 3 months I'll get new scans and I'll learn if I'm all clear or if I'll need more radiation. Spot treating is not ideal, but it is the best solution for the present. At some point I might have to radiate the whole brain, but Dr. Lee and my other doctors want that to be one of our last resorts.
That's that. The fight goes on. The cancer just won't die...but neither will I. HA!
The recovery was surprisingly painless and within 4 days I was home and recovering well, at least physically. Emotionally and mentally I'm a little messed up. Brain not functioning at full capacity and I'm struggling with more than my usual amount of anxiety. Apparently, it's all very normal.
The Plan:
Despite this set back, the Herceptin has continued to keep the cancer in remission below the neck, so I'll still do that treatment every 3 weeks as usual. But what to do about my brain? In early September I will have 1 treatment of GAMMA Knife Radiation. Gamma knife is really fancy radiation that targets a specific area rather than the whole head. This is good because there is less chance that any damage will be done to the healthy parts of my brain.
The only problem is that there is no treatment at the moment to prevent more tumors from growing in the brain. They can zap it well and good but something MIGHT escape to do some damage. We already know there are some cancer cells floating around my body or they wouldn't have found a home in my head in the first place.
So I'm on permanent wait and see. Every 3 months I'll get new scans and I'll learn if I'm all clear or if I'll need more radiation. Spot treating is not ideal, but it is the best solution for the present. At some point I might have to radiate the whole brain, but Dr. Lee and my other doctors want that to be one of our last resorts.
That's that. The fight goes on. The cancer just won't die...but neither will I. HA!
Saturday, August 16, 2008
Farewell
Ever since the Ted Koppel special "Living With Cancer" I was drawn to Koppel's best friend Leroy Sievers and his blog "My Cancer" on NPR. Leroy spoke so honestly and eloquently about what it means to have this disease, to fight this disease, to live with this disease. It felt good to read his posts about the humor and the horror of cancer and all else in between. On August 16th, 2008 Leroy Seivers passed away. The following is the obituary from NPR.
------
Journalist Leroy Sievers, who covered wars, genocides and natural disasters in more than a dozen countries — and who chronicled life after his cancer diagnosis for NPR on-air and online — died Friday. He was 53.
In his radio essays, in his podcast commentaries and on the blog, My Cancer, Sievers addressed the polite silences that surround cancer. He described his early internal debates about whether it was worth it to buy new pants and shoes. He spoke frankly about his hope that he would live long enough to read the final installment in the Harry Potter series. (He did, reporting avidly on the 759-page volume in a blog post written late at night, immediately after he finished the book.)
"Leroy gave voice to a topic that we are very uncomfortable with — death and dying," McDonnell said. "My Cancer had a face and a heart and a smile."
Why Blog? Because 'No One Walks This Road Alone'
In May 2007, Ted Koppel hosted a three-hour, prime-time Discovery Channel documentary, Living with Cancer, in which he interviewed his friend and longtime colleague. In interviews before the documentary aired, many reporters asked Sievers variations on one basic question: "What do you get out of writing the blog?" He concluded one My Cancer post with an answer: "A daily reminder that none of us walks this road alone. What could be better than that?" Sievers blogged about his cancer almost every day. Even on days that he could "forget" about the disease, he argued, it was important that he share his reflections for the many readers who didn't have such a momentary reprieve.
Written by Shomial Ahmad
------
Journalist Leroy Sievers, who covered wars, genocides and natural disasters in more than a dozen countries — and who chronicled life after his cancer diagnosis for NPR on-air and online — died Friday. He was 53.
In his radio essays, in his podcast commentaries and on the blog, My Cancer, Sievers addressed the polite silences that surround cancer. He described his early internal debates about whether it was worth it to buy new pants and shoes. He spoke frankly about his hope that he would live long enough to read the final installment in the Harry Potter series. (He did, reporting avidly on the 759-page volume in a blog post written late at night, immediately after he finished the book.)
"Leroy gave voice to a topic that we are very uncomfortable with — death and dying," McDonnell said. "My Cancer had a face and a heart and a smile."
Why Blog? Because 'No One Walks This Road Alone'
In May 2007, Ted Koppel hosted a three-hour, prime-time Discovery Channel documentary, Living with Cancer, in which he interviewed his friend and longtime colleague. In interviews before the documentary aired, many reporters asked Sievers variations on one basic question: "What do you get out of writing the blog?" He concluded one My Cancer post with an answer: "A daily reminder that none of us walks this road alone. What could be better than that?" Sievers blogged about his cancer almost every day. Even on days that he could "forget" about the disease, he argued, it was important that he share his reflections for the many readers who didn't have such a momentary reprieve.
Written by Shomial Ahmad
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