I just spent two days with my friend Bob at the SF VA Hospital. During that time, we didn't watch TV or read, but we did spend a lot of time telling stories.
At first, the life stories Bob shared seemed random and unconnected. But it didn't take long to see a theme emerging. In each story, Bob is cast as the wandering adventurer who uses his wits and charm to overcome obstacles. ("I was hitchhiking through the Appalachia Mountains and needed a place to spend the night. . .")
Bob often shared a story with one of his doctors, a competent crew of young residents from UC-SF. Some looked confused, as though they were trying to figure out the point of the story. Others looked like they hoped the story would end soon so that they could continue their busy rounds. But one female resident, my favorite, would listen to Bob like he was her favorite great uncle. She had all the time in the world.
She must understand the healing power of stories. She knows they aren't the incoherent ramblings of a doddering patient. They are a patient's way of telling doctors, "See - I wasn't always frail and helpless like I am now," or "Please see the complete me."
The stories are also Bob's celebration of who he was and a reminder that perhaps the wandering adventurer who overcame obstacles with wit and charm still exists in his older, cancer-ravaged body. Could he channel that same charming adventurer to help him overcome the greatest obstacle of all?
I hope that Bob will keep telling his stories - to himself, to friends, to doctors, to anyone who will listen. I know I'll be there to listen as much as possible.
Wednesday, January 30, 2008
Monday, January 28, 2008
News: Emotional well-being doesn't affect cancer outcome
Emotional well-being doesn't affect cancer outcome. That was the conclusion reached in a study evaluating over 1000 cancer patients and their survival rates over an eight year period. The study was published in the journal Cancer in October of 2007. This is a link to the article:
Emotional well-being doesn't affect cancer outcome>
I have a feeling the research is correct, and I so love the burden that lifts from many of us who have received a cancer diagnosis. It's okay if we aren't always smiling.
Another great article to read is:
The Tyranny of Positive Thinking
from the book "The Human Side of Cancer" by Jimmie C. Holland, M.D., of Memorial Sloan-Kettering Cancer Center.
I know many told me I did so well because I was always so positive. They were sure that was why I got through surgery and chemo without incident. They are sure my great attitude is the reason I have been cancer-free since.
I did try to stay positive, at least in public, when I was going through all of that. I made myself smile a lot. I also fought as hard as I could with everything I had in me and available to me for the better part of a year. And in a sense I am still fighting, we can never really let down our guard.
I thought maybe negative thoughts would make cancer cells grow or depress my immune system or in some other way sabotage my likelihood of staying alive, so I was afraid to think negatively. I was afraid to be depressed, I was afraid to be stressed, I was afraid to be anxious. I was afraid to be afraid.
But the truth is, I was sometimes depressed, I cried a lot when no one was looking, I was stressed, and I was afraid. I was terrified a lot of the time, terrified that my cancer might return, that it had returned, that I wouldn't live to raise my kids. I felt I truly understood the meaning of the word anguish before every CT scan. I wrote pages and pages and pages in my journal trying to exorcise those feelings. In private I wasn't so "up". Then I felt guilty for having those negative emotions, didn't I have enough faith? Guilt was added to the list of negative feelings I wasn't supposed to have.
I was not always positive.
Those diagnosed with appendiceal cancer and advanced abdominal cancers especially struggle. They face a huge surgery (hence the MOAS nickname "Mother Of All Surgeries") and its aftermath. And even when the surgery, chemo and recovery are finally over (not the debt, of course) there is the extended period of living in limbo unsure of a future. The endless testing. The insecurity. The horrible statistics inprinted on our brains. There is the picking up of the pieces of our old before-cancer life in the aftermath and the trying to make sense of what's left...employment, school, altered relationships, childcare. There is the coping with the realization that our normal lives before cancer are forever gone.
Yes, we often feel sad, afraid, and depressed, though often we hide how we feel from those who love us as they already have done enough for us. We don't want to burden them also with our struggling emotions, so we go it alone. Especially when they so want us to be positive and strong as they are sure our cancer will return if we can't stay "up".
We need to accept the negative feelings associated with a cancer diagnosis. We don't need to feel guilty or afraid when we have them. They are normal feelings. We are not sabotaging our odds of staying alive when we struggle, we are just being human. And that's okay.
Emotional well-being doesn't affect cancer outcome>
I have a feeling the research is correct, and I so love the burden that lifts from many of us who have received a cancer diagnosis. It's okay if we aren't always smiling.
Another great article to read is:
The Tyranny of Positive Thinking
from the book "The Human Side of Cancer" by Jimmie C. Holland, M.D., of Memorial Sloan-Kettering Cancer Center.
I know many told me I did so well because I was always so positive. They were sure that was why I got through surgery and chemo without incident. They are sure my great attitude is the reason I have been cancer-free since.
I did try to stay positive, at least in public, when I was going through all of that. I made myself smile a lot. I also fought as hard as I could with everything I had in me and available to me for the better part of a year. And in a sense I am still fighting, we can never really let down our guard.
I thought maybe negative thoughts would make cancer cells grow or depress my immune system or in some other way sabotage my likelihood of staying alive, so I was afraid to think negatively. I was afraid to be depressed, I was afraid to be stressed, I was afraid to be anxious. I was afraid to be afraid.
But the truth is, I was sometimes depressed, I cried a lot when no one was looking, I was stressed, and I was afraid. I was terrified a lot of the time, terrified that my cancer might return, that it had returned, that I wouldn't live to raise my kids. I felt I truly understood the meaning of the word anguish before every CT scan. I wrote pages and pages and pages in my journal trying to exorcise those feelings. In private I wasn't so "up". Then I felt guilty for having those negative emotions, didn't I have enough faith? Guilt was added to the list of negative feelings I wasn't supposed to have.
I was not always positive.
Those diagnosed with appendiceal cancer and advanced abdominal cancers especially struggle. They face a huge surgery (hence the MOAS nickname "Mother Of All Surgeries") and its aftermath. And even when the surgery, chemo and recovery are finally over (not the debt, of course) there is the extended period of living in limbo unsure of a future. The endless testing. The insecurity. The horrible statistics inprinted on our brains. There is the picking up of the pieces of our old before-cancer life in the aftermath and the trying to make sense of what's left...employment, school, altered relationships, childcare. There is the coping with the realization that our normal lives before cancer are forever gone.
Yes, we often feel sad, afraid, and depressed, though often we hide how we feel from those who love us as they already have done enough for us. We don't want to burden them also with our struggling emotions, so we go it alone. Especially when they so want us to be positive and strong as they are sure our cancer will return if we can't stay "up".
We need to accept the negative feelings associated with a cancer diagnosis. We don't need to feel guilty or afraid when we have them. They are normal feelings. We are not sabotaging our odds of staying alive when we struggle, we are just being human. And that's okay.
"FUCK YEAH!!!!!!!!!"
The above misquote (it should actually be "America, fuck yeah!") comes from the movie classic, "Team America," by Matt Stone and Trey Parker of "South Park" fame. The reason I pay homage to this movie is because there's a certain "je ne sais qua" surrounding this quote. First of all, it was just this weekend that my dear hubby, for some inexplicable reason, walked around our house saying "America, fuck yeah!" In spite of the mystery behind his new tick, I found it beyond hilarious--so much so that in the midst of my fourth core biopsy this morning, I thought of him saying that and burst out laughing as the huge-ass needle was being inserted into my tiny boob. The ultrasound technician said, "Are you okay?" Clearly, I'm not.
Alright, then.
So the rest of the connection comes from the flurry of American activity and influence in which I have been engaged over the past week. And I'm not talking about how I watch the U.S. presidential race in pain from across the border. Here are some photo and video highlights.
Lisa saves the day! As I previously posted, my hellish day in O'Hare ended on an awesome note when I told the lovely airport people to just send my ass to Pittsburgh (rather than my original destination of Harrisburg), where I was graciously picked up by Lisa and Larry. Here are me and Lisa in Mifflintown!
Bonjour, Madame! Lisa and I had some bites and beers with our high school French teacher, Pam, pictured here with me. Lisa's mom Vicki also joined in the joy and goodwill.
Here are Lisa, Pam, and me, saying "Au revoir!" and see you soon.
The next day, my sister Hanh and niece Stevii came for an overnight visit. Stevii, Lisa, and I spent a ridiculous amount of time playing Scrabulous on Facebook, while Hanh looked over our shoulders so that she could "help" us. [FUN FACT: Lisa's dad Joel was Hanh's teacher at Fermanagh-Mifflintown Elementary School, where he infamously kicked over a desk one time and scared the bejeezus out of my sister. To this day, the mere mention of "Mr. Cunningham" causes my sister to cower in fear.]
The next morning, I greet my niece with kisses, as her mom kissed my head with her bright red lips just moments before. You can tell by Stevii's crazy hair that we had a wild night of IM'ing.
Here's me and my not-so-little nephew Tyler in his newly purchased house. He's so happy to see me!
Now, this is one of the proudest moments of my life...I made front page of my hometown newspaper! Yes! Carol Smith, who's a high school pal of my sister's, interviewed me during my visit home. She was super nice, and the article is just freaking awesome.
Page Deux of the article.
Finally, the day before I headed back to Vancouver, it was my nephew's 22nd birthday. Twenty-fucking-two years old. I used to change his diapers. Anyway, my sister said she had not one, but TWO, Big Macs right after giving birth to him. So even though Tyler was not there to celebrate his birthday with us, we honored him by eating Big Macs and fries.
That was probably the most awesomest time I ever had in Mifflintown. Perhaps the cancer crap has helped me put things in a new light, especially concerning where I came from and all that cheesy stuff. But it was pretty cool to see my family and spend time with them. And as I told my cousin Kris, the next time I go to Mifflintown, I'm either going to be hot or pregnant. Cuz if I'm hot, then I'm not having anymore kids. If I'm less than hot, then sure, why not. I mean, you know, there's got to be an upside to all this, right? And with this perspective, the glass is always half full.
So, a couple days after I returned to Vancouver, my funny girl Irene came to visit from LA. We all love hanging with Auntie Reenie. Here are a couple pictures of the silliness, taken with Chloe's cam:
Auntie Reenie and Chloe hamming it up, after spending hours braiding Chloe's ponies' hair.
They turned the camera on me after Chloe placed her horse on my head. I'm really happier than I appear.
After Irene went home today, I had my fourth biopsy. Good news--it was hard to find any evidence of cancer. However, there was one tumor that appeared on the ultrasound, from which they took four samples. I have an appointment with my oncologist tomorrow to discuss my future. And this Wednesday, I begin radiation. Twenty-five treatments. FUCK YEAH!!!! Let's burn the shit out of the cancer.
So now I'm just trying to enjoy the return to normalcy, if there is such a thing at this point. Of course, I'm also freaking out a little about how that normalcy will be taken away yet again in April, when I have surgery. But my outlook on life is pretty good for the time being, and for that, I am grateful.
AMERICA AND CANADA--FUCK YEAH!!!!!!!!
Alright, then.
So the rest of the connection comes from the flurry of American activity and influence in which I have been engaged over the past week. And I'm not talking about how I watch the U.S. presidential race in pain from across the border. Here are some photo and video highlights.
Lisa saves the day! As I previously posted, my hellish day in O'Hare ended on an awesome note when I told the lovely airport people to just send my ass to Pittsburgh (rather than my original destination of Harrisburg), where I was graciously picked up by Lisa and Larry. Here are me and Lisa in Mifflintown!
Bonjour, Madame! Lisa and I had some bites and beers with our high school French teacher, Pam, pictured here with me. Lisa's mom Vicki also joined in the joy and goodwill.
Here are Lisa, Pam, and me, saying "Au revoir!" and see you soon.
The next day, my sister Hanh and niece Stevii came for an overnight visit. Stevii, Lisa, and I spent a ridiculous amount of time playing Scrabulous on Facebook, while Hanh looked over our shoulders so that she could "help" us. [FUN FACT: Lisa's dad Joel was Hanh's teacher at Fermanagh-Mifflintown Elementary School, where he infamously kicked over a desk one time and scared the bejeezus out of my sister. To this day, the mere mention of "Mr. Cunningham" causes my sister to cower in fear.]
The next morning, I greet my niece with kisses, as her mom kissed my head with her bright red lips just moments before. You can tell by Stevii's crazy hair that we had a wild night of IM'ing.
Here's me and my not-so-little nephew Tyler in his newly purchased house. He's so happy to see me!
Now, this is one of the proudest moments of my life...I made front page of my hometown newspaper! Yes! Carol Smith, who's a high school pal of my sister's, interviewed me during my visit home. She was super nice, and the article is just freaking awesome.
Page Deux of the article.
Finally, the day before I headed back to Vancouver, it was my nephew's 22nd birthday. Twenty-fucking-two years old. I used to change his diapers. Anyway, my sister said she had not one, but TWO, Big Macs right after giving birth to him. So even though Tyler was not there to celebrate his birthday with us, we honored him by eating Big Macs and fries.
That was probably the most awesomest time I ever had in Mifflintown. Perhaps the cancer crap has helped me put things in a new light, especially concerning where I came from and all that cheesy stuff. But it was pretty cool to see my family and spend time with them. And as I told my cousin Kris, the next time I go to Mifflintown, I'm either going to be hot or pregnant. Cuz if I'm hot, then I'm not having anymore kids. If I'm less than hot, then sure, why not. I mean, you know, there's got to be an upside to all this, right? And with this perspective, the glass is always half full.
So, a couple days after I returned to Vancouver, my funny girl Irene came to visit from LA. We all love hanging with Auntie Reenie. Here are a couple pictures of the silliness, taken with Chloe's cam:
Auntie Reenie and Chloe hamming it up, after spending hours braiding Chloe's ponies' hair.
They turned the camera on me after Chloe placed her horse on my head. I'm really happier than I appear.
After Irene went home today, I had my fourth biopsy. Good news--it was hard to find any evidence of cancer. However, there was one tumor that appeared on the ultrasound, from which they took four samples. I have an appointment with my oncologist tomorrow to discuss my future. And this Wednesday, I begin radiation. Twenty-five treatments. FUCK YEAH!!!! Let's burn the shit out of the cancer.
So now I'm just trying to enjoy the return to normalcy, if there is such a thing at this point. Of course, I'm also freaking out a little about how that normalcy will be taken away yet again in April, when I have surgery. But my outlook on life is pretty good for the time being, and for that, I am grateful.
AMERICA AND CANADA--FUCK YEAH!!!!!!!!
The Essential Guide
The mice are wily. You can see why scientists use them all the time. I set a trap with Nutella and put it in the mouse drawer. Nothing, but less Nutella. I put a blue poison pellet on top and the pellet was gone. I wedged in a little piece of the pellet. That was gone too. Then I got some cheese and pushed it under this little vent on the plastic platform of the trap. This morning I checked and the trap was gone and there was blood about five inches away from where the trap had been. I figured we'd caught the mouse and L had thrown away the trap and mouse.
For some reason I opened the drawer further. There was a mouse in the back of the drawer, with his feet caught in the trap. He looked at me with his big black eyes. He hopped around. I knew I had to kill him. I called L and he said he'd heard him jumping around but figured he'd die soon. Thanks a lot. He advised me to put the mouse and trap in a plastic bag and bang it against the concrete. But that involves getting dressed. I knew I had to put the mouse out of its misery.
First I covered him with cardboard--an empty cracker box that I made flat. I was thinking I should get a hammer to smoosh him with but then decided a big book would be better.
This was probably the first time I've used the Chicago Manual of Style: The Essential Guide for Writers, Editors and Publishers, 14th edition. I recommend it highly. This is definitely an instance when the spiral-bound AP Stylebook, which I use more often, would not have been as useful.
For some reason I opened the drawer further. There was a mouse in the back of the drawer, with his feet caught in the trap. He looked at me with his big black eyes. He hopped around. I knew I had to kill him. I called L and he said he'd heard him jumping around but figured he'd die soon. Thanks a lot. He advised me to put the mouse and trap in a plastic bag and bang it against the concrete. But that involves getting dressed. I knew I had to put the mouse out of its misery.
First I covered him with cardboard--an empty cracker box that I made flat. I was thinking I should get a hammer to smoosh him with but then decided a big book would be better.
This was probably the first time I've used the Chicago Manual of Style: The Essential Guide for Writers, Editors and Publishers, 14th edition. I recommend it highly. This is definitely an instance when the spiral-bound AP Stylebook, which I use more often, would not have been as useful.
Sunday, January 27, 2008
SF Here I Come
I've already postponed my trip to SF twice this month, but now that the white blood counts are flying high, I'm ready to fly up tomorrow for a three-day visit.
The focus this time will be more on friends and less on food. I plan to spend as much time as possible with my dear friend Bob (age 81), who is hospitalized at the SF VA Medical Center. Of course, I'll get the chance to compare the food at the VA with the grub at CoH. We'll see how the VA stacks up when it comes to menu variety, service, presentation and flavor. As much as I complained about the chow at CoH, I have a feeling it'll win the "battle of the hospital food service competition" hands down.
The focus this time will be more on friends and less on food. I plan to spend as much time as possible with my dear friend Bob (age 81), who is hospitalized at the SF VA Medical Center. Of course, I'll get the chance to compare the food at the VA with the grub at CoH. We'll see how the VA stacks up when it comes to menu variety, service, presentation and flavor. As much as I complained about the chow at CoH, I have a feeling it'll win the "battle of the hospital food service competition" hands down.
Breast Cancer Gene Testing Less Likely Among Blacks
NEW YORK (Reuters Health) - African American women are generally less likely than white women to pursue genetic testing for BRCA1 or BRCA2, the gene mutations associated with an increased risk of break cancer, researchers report. However, African American women with a recent diagnosis of breast cancer are much more likely to do so, according to the article in the Journal of Clinical Oncology.
"Everybody deserves consideration for testing if their clinical and family history situation warrant it," Dr. James P. Evans, from the University of North Carolina at Chapel Hill, told Reuters Health. "Regardless of race, one has to approach genetic testing as an important option and explain the pros and cons to the patient."
Evans and associates examined race and the timing of breast cancer diagnosis and the frequency of BRCA1/2 genetic testing among women attending the UNC Cancer Genetics Service.
Among 768 women diagnosed with breast cancer who were offered BRCA1/2 testing, the rates of testing among African American and white patients did not differ, authors report.
Overall, African American women were 46 percent less likely than white women to undergo BRCA1/2 genetic testing, the author report.
Women who were diagnosed recently had a higher odds of pursuing testing than did women diagnosed more than 1 year before genetic evaluation, the investigators say, but this difference was statistically significant only for African American women, who were almost three-times as likely to undergo genetic testing.
Why a recent breast cancer diagnosis increases the use of BRCA1/2 genetic testing so "dramatically" among African American "could contribute to a better understanding of racial disparities in genetic testing and medicine," the authors conclude.
"We continue to aggressively try to find avenues for women who need testing but can't afford it, Evans said."One of the most interesting (and distressing) features of our study in my mind is that almost half of the patients who could benefit from testing can't get it...either because they had no insurance or their insurance was inadequate. Only through our special program were we able to provide it for all those patients."
Maximizing the use of BRCA1/2 testing requires "good genetic counseling and a personalized attentive approach on the side of the medical team," Evans advised. "We try to take a lot of time to explain the nuances to women and why testing can be of help to them and their families. I think this is especially important with African American patients where there is traditionally a lower level of trust in the medical profession (understandably)."
SOURCE: Journal of Clinical Oncology, January 1, 2008; breastcancer.org
******
"Everybody deserves consideration for testing if their clinical and family history situation warrant it," Dr. James P. Evans, from the University of North Carolina at Chapel Hill, told Reuters Health. "Regardless of race, one has to approach genetic testing as an important option and explain the pros and cons to the patient."
Evans and associates examined race and the timing of breast cancer diagnosis and the frequency of BRCA1/2 genetic testing among women attending the UNC Cancer Genetics Service.
Among 768 women diagnosed with breast cancer who were offered BRCA1/2 testing, the rates of testing among African American and white patients did not differ, authors report.
Overall, African American women were 46 percent less likely than white women to undergo BRCA1/2 genetic testing, the author report.
Women who were diagnosed recently had a higher odds of pursuing testing than did women diagnosed more than 1 year before genetic evaluation, the investigators say, but this difference was statistically significant only for African American women, who were almost three-times as likely to undergo genetic testing.
Why a recent breast cancer diagnosis increases the use of BRCA1/2 genetic testing so "dramatically" among African American "could contribute to a better understanding of racial disparities in genetic testing and medicine," the authors conclude.
"We continue to aggressively try to find avenues for women who need testing but can't afford it, Evans said."One of the most interesting (and distressing) features of our study in my mind is that almost half of the patients who could benefit from testing can't get it...either because they had no insurance or their insurance was inadequate. Only through our special program were we able to provide it for all those patients."
Maximizing the use of BRCA1/2 testing requires "good genetic counseling and a personalized attentive approach on the side of the medical team," Evans advised. "We try to take a lot of time to explain the nuances to women and why testing can be of help to them and their families. I think this is especially important with African American patients where there is traditionally a lower level of trust in the medical profession (understandably)."
SOURCE: Journal of Clinical Oncology, January 1, 2008; breastcancer.org
******
Bif Naked Fighting Breast Cancer By Making Music
Bif Naked, Canadian punk rocker, 36-year-old newlywed, vows to keep working on two new albums while in treatment for breast cancer. Bif, born Beth Torbert, found the breast lump herself while doing a regular breast self-exam. Bif is known for her healthy lifestyle, strict vegan diet, dedicated workout routine, and regular yoga sessions.
"I have never been one to give up when an obstacle is placed in front of me. I am in the fight of my life, and I'm lucky to have the support of my husband Ian and many friends and family members," said Bif. She plans to continue work on her sixth album, as well as a new project with Spanish-born, death-metal guitarist La Machina, to be called Jakkarta.
Bif Naked's treatment will include surgery, radiation and chemotherapy.
Source: breastcancer.about.com
******
"I have never been one to give up when an obstacle is placed in front of me. I am in the fight of my life, and I'm lucky to have the support of my husband Ian and many friends and family members," said Bif. She plans to continue work on her sixth album, as well as a new project with Spanish-born, death-metal guitarist La Machina, to be called Jakkarta.
Bif Naked's treatment will include surgery, radiation and chemotherapy.
Source: breastcancer.about.com
******
Saturday, January 26, 2008
doc visits (child doc)
I had a first today, something I have not done in 2 years. I took one of my daughters to the pediatrician today (wearing a mask of course). I don't think I picked up any bugs while there but I was still nervous the whole time I was there. I can't live in a bubble though.
What Scar?...
...I asked my husband L today on the phone. He'd asked me if I remembered showing everyone my scar last night. I thought it might have been the scar from removing the port.
It wasn't that scar. Apparently, under the influence of demon rum (or rather, tequila) I flashed my mastectomy scar twice. Were people horrified? I asked. He said no.
There were six of us at the table at Fernando's and a couple carafes of margaritas. Today M reported that I kept asking him, Do you want to know a secret? but I told the same one or two over and over. I didn't ask what I told him.
I hadn't been this drunk for about 10 years. It made me realize why people drink, why frat boys have frat parties and people go to bars and sling back the beers. Because you get giddy and nothing matters and you're out of control.
And then you have patches of memory.
Did we have flan? I asked M. We had. I remembered two shared dishes of flan and I remember ordering shrimp veracruz and I remember the food coming but I don't remember eating it. M said that his girlfriend L told me that I didn't need reconstruction.
Alcohol unleashes inhibitions. Does this mean that I really want to show my scar? Perhaps. I was thinking of that Beauty Out of Damage photo and wondering if I should have a picture like that of myself on the cover of my book. How would that go over at WRU? I wonder. And the more appropriate photo would be of the back of my head, where you can read US OUT OF IRAQ.
But let's get back to the scar. I'm usually the only one in the locker room at the park district building when I change for step aerobics. I've wondered what the reaction would be if someone saw me. I'm sharing a room with Miz P at an upcoming conference. I've imagined myself asking her if she'd like to see the scar. I think the scar is interesting. I've wanted to see friends' scars but thought it impolite to ask. I saw a mastectomy scar for the first time at the former Women's Gym, about 20 years ago. One of the proprietors had cancer and it seemed to me then that she came back to exercise a week after surgery. It couldn't have been that short a time, but it seemed like it. I was impressed that she'd returned to quickly and that she was healthy enough to go on like before.
I read somewhere about a woman going topless at a swimming pool, so that you could see the scars from her double mastectomy. The other women complained. You must cover your breasts because they are sexual. Right? But if the breasts are erased, is the erasure too sexual, too?
There's an odd new Canadian project on line sponsored by Schick and Rethink, a breast cancer charity. It's got the horribly coy title of Booby Wall, and it's picture after picture of women's breasts, sent in by the women themselves (supposedly). I saw two photos of the one-breast-and-scar combo, and one photo of reconstructed breasts without nipples. The campaign is to get women, especially young women, to Touch, Look and Check (TLC) their breasts. "Booby" connotes sniggering and disrespect. At least it does to me. How many idiots did it take to come up with this concept?
I will not be uploading pictures of my breast-and-scar. To see my chest, you'll have to come to the locker room. Or wait till I'm once-in-a-blue-moon drunk.
It wasn't that scar. Apparently, under the influence of demon rum (or rather, tequila) I flashed my mastectomy scar twice. Were people horrified? I asked. He said no.
There were six of us at the table at Fernando's and a couple carafes of margaritas. Today M reported that I kept asking him, Do you want to know a secret? but I told the same one or two over and over. I didn't ask what I told him.
I hadn't been this drunk for about 10 years. It made me realize why people drink, why frat boys have frat parties and people go to bars and sling back the beers. Because you get giddy and nothing matters and you're out of control.
And then you have patches of memory.
Did we have flan? I asked M. We had. I remembered two shared dishes of flan and I remember ordering shrimp veracruz and I remember the food coming but I don't remember eating it. M said that his girlfriend L told me that I didn't need reconstruction.
Alcohol unleashes inhibitions. Does this mean that I really want to show my scar? Perhaps. I was thinking of that Beauty Out of Damage photo and wondering if I should have a picture like that of myself on the cover of my book. How would that go over at WRU? I wonder. And the more appropriate photo would be of the back of my head, where you can read US OUT OF IRAQ.
But let's get back to the scar. I'm usually the only one in the locker room at the park district building when I change for step aerobics. I've wondered what the reaction would be if someone saw me. I'm sharing a room with Miz P at an upcoming conference. I've imagined myself asking her if she'd like to see the scar. I think the scar is interesting. I've wanted to see friends' scars but thought it impolite to ask. I saw a mastectomy scar for the first time at the former Women's Gym, about 20 years ago. One of the proprietors had cancer and it seemed to me then that she came back to exercise a week after surgery. It couldn't have been that short a time, but it seemed like it. I was impressed that she'd returned to quickly and that she was healthy enough to go on like before.
I read somewhere about a woman going topless at a swimming pool, so that you could see the scars from her double mastectomy. The other women complained. You must cover your breasts because they are sexual. Right? But if the breasts are erased, is the erasure too sexual, too?
There's an odd new Canadian project on line sponsored by Schick and Rethink, a breast cancer charity. It's got the horribly coy title of Booby Wall, and it's picture after picture of women's breasts, sent in by the women themselves (supposedly). I saw two photos of the one-breast-and-scar combo, and one photo of reconstructed breasts without nipples. The campaign is to get women, especially young women, to Touch, Look and Check (TLC) their breasts. "Booby" connotes sniggering and disrespect. At least it does to me. How many idiots did it take to come up with this concept?
I will not be uploading pictures of my breast-and-scar. To see my chest, you'll have to come to the locker room. Or wait till I'm once-in-a-blue-moon drunk.
Friday, January 25, 2008
The View From Eighty
I had an interesting conversation today with a man in his eighties diagnosed with lung cancer. He's already lived a year with it, it's a single small tumor that's stayed the same size and even shrunk a bit with treatment. It hasn't gone anywhere else. But he felt it was unfair that he had cancer, unfair it wasn't going away with treatment, unfair that chemo made him tired. It was unfair he had lung cancer when he'd quit smoking many years ago. He was afraid of dying prematurely of cancer. He wanted me to reassure him he would be cured.
But he got 40 more years than I did cancer-free. He got to finish his life, raise his kids, fulfill his commitments and travel before he had to deal with a cancer diagnosis. A cancer diagnosis while in your mid-eighties didn't seem so unfair.
I had to wrap my head around that a bit.
I read a book once, "The View From Eighty", written by Malcolm Cowley, born in 1898. He had turned eighty and wanted to tell everyone what it felt like to have lived for eight decades. He said he still felt 25 until he stood up and noticed his body didn't work so well. He said death and disease were never fair at any age; if you were 25, you thought 50 was old and death and disability could be expected at that age. But when you were 50, fifty was young; potential death and disability were decades away at age 70... until, of course, you turned 70. So my eighty year old friend probably thinks cancer and death should still be decades away, at 100 years old.
When I think about it, maybe some mother with a young child bald from chemo saw me at Sloan-Kettering at age 41. Maybe she thought how lucky I was to have lived for four decades. I'd made it to college graduation, marriage and had lived to get my first grey hair. I'd been able to have children. To her I'm sure I was the lucky one. She probably would have loved for her child to live to age 40.
I guess there is never a right or good time or age for cancer.
It's never fair.
But he got 40 more years than I did cancer-free. He got to finish his life, raise his kids, fulfill his commitments and travel before he had to deal with a cancer diagnosis. A cancer diagnosis while in your mid-eighties didn't seem so unfair.
I had to wrap my head around that a bit.
I read a book once, "The View From Eighty", written by Malcolm Cowley, born in 1898. He had turned eighty and wanted to tell everyone what it felt like to have lived for eight decades. He said he still felt 25 until he stood up and noticed his body didn't work so well. He said death and disease were never fair at any age; if you were 25, you thought 50 was old and death and disability could be expected at that age. But when you were 50, fifty was young; potential death and disability were decades away at age 70... until, of course, you turned 70. So my eighty year old friend probably thinks cancer and death should still be decades away, at 100 years old.
When I think about it, maybe some mother with a young child bald from chemo saw me at Sloan-Kettering at age 41. Maybe she thought how lucky I was to have lived for four decades. I'd made it to college graduation, marriage and had lived to get my first grey hair. I'd been able to have children. To her I'm sure I was the lucky one. She probably would have loved for her child to live to age 40.
I guess there is never a right or good time or age for cancer.
It's never fair.
Thursday, January 24, 2008
Artemis in the City
N.B.: This post is not about cancer, just death. And it's probably not that interesting, either.
For Chanukah, L's kids got us matching pajamas, coordinated robes, a six-month gift certificate for Netflix, and four bags of flavored popcorn. We had some of the popcorn and put the rest in a kitchen drawer.
I was in the kitchen the other night and I thought I heard a rustling. It came from the popcorn drawer. I opened the drawer and found loose popcorn, and holes in the popcorn bags, and, of course, mouse droppings.
For years we've had a cardboard box sitting on the kitchen floor. It was put there by an exterminator and inside was a mouse trap. I noticed a tail coming out of it.
I cleaned out the drawer and set a trap there. Next day there was a dead mouse in the trap and I gingerly put it in a bag and threw it away. I bought more traps from the Walgreens on Broadway.
No one showed up.
In the kitchen and office we have little black boxes that the exterminator also put there years ago. Yesterday we noticed that there was a bird seed scattered around it, and then today, I heard little crunching noises coming from it. Apparently this is poisoned food that the mice are attracted to. The plan is for them to take the poison back with them to the nest. In my office this afternoon I heard some crunching and it seemed to be coming from the little black box. Then I spotted a little gray mouse running along the wall.
Not much later I was in the kitchen I was talking on the phone and saw a little gray mouse feeding from the black box there. He scampered on top of the mousetrap, ran into the cardboard box, and ran out the other side. Fuck you, I hissed into the phone at my bewildered friend P. I explained that I was cursing at the mouse who had stepped right on the yellow plastic fake-cheese platform on the mousetrap. If someone steps on the platform, it's supposed to set off the trap. But apparently our mice are too light to set off the guillotine. This mouse was about half the size of the gerbils I had when I was a kid.
Tonight I bought some Victor traps from the Ace up the street. These are smaller and I hope more sensitive traps than the ones from Walgreens. I set them with jelly (we were out of peanut butter) and I put them inside the cardboard boxes and around the little black boxes.
So I wait and obsess. I kept running back and forth from room to room and checking the traps, over and over so that I had to leave the apartment in order to get work done. It's such a shame: I think the mice are so cute, I've always been enchanted by stories of prisoners and servant girls who tame the mice who come into their quarters. I'm thinking of A Little Princess, how Sara tamed the rat Melchisedec. And my parents bought me rodents as pets. Plus I haven't eaten mammals for almost 30 years: no mammal has been killed in my name. But these mice don't belong in my living quarters. They're unhygenic. Of course. So we have to go after them. This is what makes me feel guilty: I like hunting them down. It's so satisfying to catch one. I'm a hunter. I grew up stalking little lizards in Houston. I didn't kill them. I usually let them go. But the capture is thrilling. How happy cats must be.
But beyond all that--they are fascinating. This is like going on safari. They are funny furry little animals suddenly in my purview. They are outwitting me. It's in their best interest to do so. Otherwise, down comes the wire necklace with a snap.
Victor makes Live Catch Mouse Traps. I could catch and release. Where? Outside, in the cold, so the rodents could scurry back to the warmth inside?
The cold spell is supposed to break soon. Maybe the mice will leave on their own, about the same time the ground hog comes out to predict the rest of the season for us humans.
For Chanukah, L's kids got us matching pajamas, coordinated robes, a six-month gift certificate for Netflix, and four bags of flavored popcorn. We had some of the popcorn and put the rest in a kitchen drawer.
I was in the kitchen the other night and I thought I heard a rustling. It came from the popcorn drawer. I opened the drawer and found loose popcorn, and holes in the popcorn bags, and, of course, mouse droppings.
For years we've had a cardboard box sitting on the kitchen floor. It was put there by an exterminator and inside was a mouse trap. I noticed a tail coming out of it.
I cleaned out the drawer and set a trap there. Next day there was a dead mouse in the trap and I gingerly put it in a bag and threw it away. I bought more traps from the Walgreens on Broadway.
No one showed up.
In the kitchen and office we have little black boxes that the exterminator also put there years ago. Yesterday we noticed that there was a bird seed scattered around it, and then today, I heard little crunching noises coming from it. Apparently this is poisoned food that the mice are attracted to. The plan is for them to take the poison back with them to the nest. In my office this afternoon I heard some crunching and it seemed to be coming from the little black box. Then I spotted a little gray mouse running along the wall.
Not much later I was in the kitchen I was talking on the phone and saw a little gray mouse feeding from the black box there. He scampered on top of the mousetrap, ran into the cardboard box, and ran out the other side. Fuck you, I hissed into the phone at my bewildered friend P. I explained that I was cursing at the mouse who had stepped right on the yellow plastic fake-cheese platform on the mousetrap. If someone steps on the platform, it's supposed to set off the trap. But apparently our mice are too light to set off the guillotine. This mouse was about half the size of the gerbils I had when I was a kid.
Tonight I bought some Victor traps from the Ace up the street. These are smaller and I hope more sensitive traps than the ones from Walgreens. I set them with jelly (we were out of peanut butter) and I put them inside the cardboard boxes and around the little black boxes.
So I wait and obsess. I kept running back and forth from room to room and checking the traps, over and over so that I had to leave the apartment in order to get work done. It's such a shame: I think the mice are so cute, I've always been enchanted by stories of prisoners and servant girls who tame the mice who come into their quarters. I'm thinking of A Little Princess, how Sara tamed the rat Melchisedec. And my parents bought me rodents as pets. Plus I haven't eaten mammals for almost 30 years: no mammal has been killed in my name. But these mice don't belong in my living quarters. They're unhygenic. Of course. So we have to go after them. This is what makes me feel guilty: I like hunting them down. It's so satisfying to catch one. I'm a hunter. I grew up stalking little lizards in Houston. I didn't kill them. I usually let them go. But the capture is thrilling. How happy cats must be.
But beyond all that--they are fascinating. This is like going on safari. They are funny furry little animals suddenly in my purview. They are outwitting me. It's in their best interest to do so. Otherwise, down comes the wire necklace with a snap.
Victor makes Live Catch Mouse Traps. I could catch and release. Where? Outside, in the cold, so the rodents could scurry back to the warmth inside?
The cold spell is supposed to break soon. Maybe the mice will leave on their own, about the same time the ground hog comes out to predict the rest of the season for us humans.
The Skinny on Susan
I've finally tapered off the Prednisone, and none too soon. Since my last post, "Bring on the Calories," I've continued on my binge eating "Booty or Bust" food tour of Los Angeles. But in spite of going hog wild over high fat foods, the needle of the scale moved two more pounds in the wrong direction yesterday. (I'm down to 118, according to the scales at CoH.)
It seems that the plight of a rail-thin woman eating her way through Los Angeles in pursuit of pounds (and curves) is not generating a lot of sympathy. I was trying to think of a few items that might evoke even less sympathy:
What would you add to the list?
I'm also glad to be off the steroids because I don't feel like "myself." I haven't experienced any of that "inappropriate happiness," but I've felt lethargic on the outside with a calorie-burning motor racing on the inside. The end result is a snappy impatience that I usually save for my closest family members. I nearly got into a bathroom brawl with the hipster mom of a toddler in Silver Lake. I was itching to get into a fight with a man at the bar at Smitty's (but walked away instead).
The best news and cause for celebration and appropriate happiness are my blood counts. I look at them and can't believe they belong to me! I'll never call my stem cells "sluggish" or "under achievers" again.
Day 62, Wednesday, January 16, 2008
WBC 4.0 (4.0-11)
RBC 3.37 (3.8-5.2)
HGB 11.1 (11.5-15.5)
PLT 55 (150-350)
Day 68, Monday, January 20, 2008
WBC 7.0
HGB: 12.0
PLT: 90
It seems that the plight of a rail-thin woman eating her way through Los Angeles in pursuit of pounds (and curves) is not generating a lot of sympathy. I was trying to think of a few items that might evoke even less sympathy:
- Britney can't manage to save any of her $737,000 monthly income (according to US News & World Report).
- If John Edwards won the presidential election, he'd have to downsize from his 25,000-square-foot mega-house to move into the White House.
- Angelina Jolie was snubbed by the Oscars.
What would you add to the list?
I'm also glad to be off the steroids because I don't feel like "myself." I haven't experienced any of that "inappropriate happiness," but I've felt lethargic on the outside with a calorie-burning motor racing on the inside. The end result is a snappy impatience that I usually save for my closest family members. I nearly got into a bathroom brawl with the hipster mom of a toddler in Silver Lake. I was itching to get into a fight with a man at the bar at Smitty's (but walked away instead).
The best news and cause for celebration and appropriate happiness are my blood counts. I look at them and can't believe they belong to me! I'll never call my stem cells "sluggish" or "under achievers" again.
Day 62, Wednesday, January 16, 2008
WBC 4.0 (4.0-11)
RBC 3.37 (3.8-5.2)
HGB 11.1 (11.5-15.5)
PLT 55 (150-350)
Day 68, Monday, January 20, 2008
WBC 7.0
HGB: 12.0
PLT: 90
Wednesday, January 23, 2008
One Mastectomy, To Go
You've no doubt heard of "drive-by surgeries"--the derisive term coined by health reformers for inadequate hospital stays mandated or permitted by health insurance companies. I thought of fast mastectomies as I read a profile of photographer Lee Miller (1907-1977) in the January 21 New Yorker. In Paris, she took jobs that her mentor and lover May Ray passed down to her. One of these assignments was to take pictures of operations at the Sorbonne medical school. The year was 1930. We're told: "Having watched a mastectomy, she asked the surgeon if she could keep the amputated breast. She arrived for a fashion shoot at the studio of French Vogue in a buoywant mood, carrying this grisly trophy on a dinner plate, then photographed it at a place setting, next to a knife and fork." Serve that at your dinner party, Judy Chicago!
The two small contact prints of a breast on a white plate were shown for the first time in a recent retrospective at the Victoria & Albert Museum. The show ended earlier this month. Miller's son told the Times of London that she was in the operating room not on assignment, but because she was having affair with the surgeon. The doctor invited her to take pictures and gave her the breasts because she asked for them. (As a sign of his love? Did the patient on the operating table wonder where her breasts had gone, could she have imagined that what had been inside of her would suddenly be put on a plate like the head of John the Baptist? That woman is the unknown soldier.)
Opines the Times: "For years [Miller] had been celebrated for the beauty of her breasts. At one time, her breasts had even inspired the design of a champagne glass. Images of her face and body, particularly her breasts, had been snipped up by Man Ray as part of his reductive process of control. 'What did all that do to her, I wonder,' says [son Tony] Penrose. 'The knowledge that men loved her body. Here she was, saying, "OK, you revere breasts. OK, here’s one. Have it. Eat it." And the shoot took place in the Vogue studio, where the commodification of women occurred every day.'"
How easy it is to offer someone else's breasts.
These days, a photographer couldn't run off with someone's breasts hot off the body. Can you imagine? Stop, thief! Once I was in a restaurant and the waitress told us someone had come into the kitchen and made off with half our pizza. But breasts?
How wrong it feels to have parts of ourselves that never see the light--to have them taken from inside of us and looked at.
We have bones and muscles to hold our organs in place, so they don't go flopping around inside us, and we have skin so that everything won't fall out of us. There is something horrible about seeing what should be enclosed and encased and hidden by skin.
In Israel there are Orthodox volunteers who gather body parts after a bombing to make sure that the remains have a religious burial. The people who do this often have PTSD.
What did that woman look like, the one who lay on the table at the Sorbonne medical school while another woman made sport of her breasts? Did that woman live? We assume her breasts were cancerous and were removed in order to save her. How old was she? How much longer did she live?
It's not so hard these days to find images of women with mastectomy scars. One of the most famous is Matuschka's 1993 self portrait on the cover on the New York Times Magazine. We can imagine what the Frenchwoman looked like after her surgery, though radical mastectomies were more the norm back then than now.
In 63 years we went from one woman taking a picture of another woman's removed breasts, to a woman taking a picture of her own scarred self after her breast was cut away. Beauty Out of Damage, she called it.
I wonder what Miller did with the breasts after she was finished with them. Who threw them away? I would bet they did not make it into a cemetary.
A dozen years later, Miller was photographing the European theater of war for British Vogue. In Saint Malo she accidentally stepped on the severed hand of an American soldier. She went on to photograph Buchenwald and Dachau; and in an extreme show of bad taste, in Munich she posed for a photo in Hitler's bathtub. This photo became infamous.
After the war she stowed her cameras and turned to cooking and drinking. She died in 1977, of cancer. I don't know what kind.
The two small contact prints of a breast on a white plate were shown for the first time in a recent retrospective at the Victoria & Albert Museum. The show ended earlier this month. Miller's son told the Times of London that she was in the operating room not on assignment, but because she was having affair with the surgeon. The doctor invited her to take pictures and gave her the breasts because she asked for them. (As a sign of his love? Did the patient on the operating table wonder where her breasts had gone, could she have imagined that what had been inside of her would suddenly be put on a plate like the head of John the Baptist? That woman is the unknown soldier.)
Opines the Times: "For years [Miller] had been celebrated for the beauty of her breasts. At one time, her breasts had even inspired the design of a champagne glass. Images of her face and body, particularly her breasts, had been snipped up by Man Ray as part of his reductive process of control. 'What did all that do to her, I wonder,' says [son Tony] Penrose. 'The knowledge that men loved her body. Here she was, saying, "OK, you revere breasts. OK, here’s one. Have it. Eat it." And the shoot took place in the Vogue studio, where the commodification of women occurred every day.'"
How easy it is to offer someone else's breasts.
These days, a photographer couldn't run off with someone's breasts hot off the body. Can you imagine? Stop, thief! Once I was in a restaurant and the waitress told us someone had come into the kitchen and made off with half our pizza. But breasts?
How wrong it feels to have parts of ourselves that never see the light--to have them taken from inside of us and looked at.
We have bones and muscles to hold our organs in place, so they don't go flopping around inside us, and we have skin so that everything won't fall out of us. There is something horrible about seeing what should be enclosed and encased and hidden by skin.
In Israel there are Orthodox volunteers who gather body parts after a bombing to make sure that the remains have a religious burial. The people who do this often have PTSD.
What did that woman look like, the one who lay on the table at the Sorbonne medical school while another woman made sport of her breasts? Did that woman live? We assume her breasts were cancerous and were removed in order to save her. How old was she? How much longer did she live?
It's not so hard these days to find images of women with mastectomy scars. One of the most famous is Matuschka's 1993 self portrait on the cover on the New York Times Magazine. We can imagine what the Frenchwoman looked like after her surgery, though radical mastectomies were more the norm back then than now.
In 63 years we went from one woman taking a picture of another woman's removed breasts, to a woman taking a picture of her own scarred self after her breast was cut away. Beauty Out of Damage, she called it.
I wonder what Miller did with the breasts after she was finished with them. Who threw them away? I would bet they did not make it into a cemetary.
A dozen years later, Miller was photographing the European theater of war for British Vogue. In Saint Malo she accidentally stepped on the severed hand of an American soldier. She went on to photograph Buchenwald and Dachau; and in an extreme show of bad taste, in Munich she posed for a photo in Hitler's bathtub. This photo became infamous.
After the war she stowed her cameras and turned to cooking and drinking. She died in 1977, of cancer. I don't know what kind.
A few articles about BAC & Lung Transplant (late night reading)
Link to an old article regarding Lung Transplant and BAC (actually it is an abstract)
http://content.nejm.org/cgi/content/full/340/14/1071
http://content.nejm.org/cgi/reprint/340/14/1071.pdf
more recent article(s) / research
http://jco.ascopubs.org/cgi/content/abstract/22/21/4351
http://jco.ascopubs.org/cgi/reprint/22/21/4351
http://content.nejm.org/cgi/content/full/340/14/1071
http://content.nejm.org/cgi/reprint/340/14/1071.pdf
more recent article(s) / research
http://jco.ascopubs.org/cgi/content/abstract/22/21/4351
http://jco.ascopubs.org/cgi/reprint/22/21/4351
Tuesday, January 22, 2008
Scanning
People say, are you in remission? Are you OK now? They check you, right? They scan you x-ray look for cancer in your blood... right?
People are anxious. They don't want to hear that my cancer could come back. They want to know that someone is watching it, that as soon as an errant cancer cell jumps into existence, some medical exterminator will be there to wipe it out.
I'm anxious. I want that, too.
There's a blood test you can take that indicates ovarian cancer, but there's not one for breast cancer. You can take scans but the oncologist say, listen to your body, see how you feel, if you have deep bone pain, call us.
I have sore vertebrae from falling on my back in aerobics (as reported below), and that soreness is thankfully, going away.
So we sit tight. Exercise, eat well and hope for the best. And take Tamoxifen, which gobbles up the estrogen that the tumor fed on.
People are anxious. They don't want to hear that my cancer could come back. They want to know that someone is watching it, that as soon as an errant cancer cell jumps into existence, some medical exterminator will be there to wipe it out.
I'm anxious. I want that, too.
There's a blood test you can take that indicates ovarian cancer, but there's not one for breast cancer. You can take scans but the oncologist say, listen to your body, see how you feel, if you have deep bone pain, call us.
I have sore vertebrae from falling on my back in aerobics (as reported below), and that soreness is thankfully, going away.
So we sit tight. Exercise, eat well and hope for the best. And take Tamoxifen, which gobbles up the estrogen that the tumor fed on.
Planning
I went to my friend's funeral today. I was sad for her husband, he is my friend also. He said he's never been alone before, this will be a new experience for him.
He spoke at his wife's service. It was wonderful, he told a story that was actually funny but that expressed her sense of humor and ability to forgive easily. He told everyone what a hero she had been to him. I learned things about her that I hadn't known. Cool thing....she used to quilt, and she saved her husband's old work shirts over the years as they were replaced. She made a quilt of all of the discarded shirts as a gift for him when he retired. Unique idea! I hope he wore colorful shirts and treated them nicely? I was trying to picture the quilt from my knowledge of work shirts worn in steel mills, and it wasn't pretty. Did she keep the shirts hidden so the quilt would be a surprise decades later? She mut have been very committed to their relationship.
But the service made me feel peaceful, and hopeful. I was glad for her....that her time with chemo and scanxiety and tests and doctor appointments and second opinions was over for good. Glad that she was well and whole again. I know she is now fully alive...not bedridden, not a hospice patient.
The service was so well done because she had planned it for those of us she knew would attend. It was her gift to us, and it was filled with hope.
I know of cancer patients who have had fun planning their funerals, one made sure they showed a movie clip during the service that she really wanted everyone to see. It wasn't anything profound or meaningful, just a clip she liked and wanted to make sure no one missed. I heard they left the service scratching their heads, and I'm sure she was somewhere laughing. I'm thinking you could kind of have some fun planning your own funeral? Leave 'em laughing, even? Get the last word in? I mean, who could say no to your final requests? It could be an opportunity for the ultimate in creativity.
Someone asked me many years ago if I would rather know I was going to die before it happened. At the time I said yes, as then I could make sure my laundry was done and that I'd cleaned up after myself and had not left out one of my journals for everyone to read. If I knew ahead of time I could tie up my loose ends and not embarrass myself. I wanted control!
But now, after years of testing and limbo and contemplation of one's end, I would choose to live oblivious to any thoughts of my own demise, to go about my day-to-day activities planning for an indefinite future in ignorant bliss (like I did before cancer took way my "normal"). Now I'd choose to just have a massive unexpected heart attack when it was my time to go.
So what if they read my journals.
I've learned I'm really not in control at all anyway, control is an illusion. All plans are tentative.
He spoke at his wife's service. It was wonderful, he told a story that was actually funny but that expressed her sense of humor and ability to forgive easily. He told everyone what a hero she had been to him. I learned things about her that I hadn't known. Cool thing....she used to quilt, and she saved her husband's old work shirts over the years as they were replaced. She made a quilt of all of the discarded shirts as a gift for him when he retired. Unique idea! I hope he wore colorful shirts and treated them nicely? I was trying to picture the quilt from my knowledge of work shirts worn in steel mills, and it wasn't pretty. Did she keep the shirts hidden so the quilt would be a surprise decades later? She mut have been very committed to their relationship.
But the service made me feel peaceful, and hopeful. I was glad for her....that her time with chemo and scanxiety and tests and doctor appointments and second opinions was over for good. Glad that she was well and whole again. I know she is now fully alive...not bedridden, not a hospice patient.
The service was so well done because she had planned it for those of us she knew would attend. It was her gift to us, and it was filled with hope.
I know of cancer patients who have had fun planning their funerals, one made sure they showed a movie clip during the service that she really wanted everyone to see. It wasn't anything profound or meaningful, just a clip she liked and wanted to make sure no one missed. I heard they left the service scratching their heads, and I'm sure she was somewhere laughing. I'm thinking you could kind of have some fun planning your own funeral? Leave 'em laughing, even? Get the last word in? I mean, who could say no to your final requests? It could be an opportunity for the ultimate in creativity.
Someone asked me many years ago if I would rather know I was going to die before it happened. At the time I said yes, as then I could make sure my laundry was done and that I'd cleaned up after myself and had not left out one of my journals for everyone to read. If I knew ahead of time I could tie up my loose ends and not embarrass myself. I wanted control!
But now, after years of testing and limbo and contemplation of one's end, I would choose to live oblivious to any thoughts of my own demise, to go about my day-to-day activities planning for an indefinite future in ignorant bliss (like I did before cancer took way my "normal"). Now I'd choose to just have a massive unexpected heart attack when it was my time to go.
So what if they read my journals.
I've learned I'm really not in control at all anyway, control is an illusion. All plans are tentative.
Implants--More Dangers
I seem to be on a soap box here. But I must say that I know people with implants from reconstruction and they haven't had infection.
January 22, 2008
Study Says Implants Double Risk of Infection in Breast Reconstruction
By NATASHA SINGER
Breast cancer patients who had reconstructive surgery using implants immediately after mastectomies were twice as likely to acquire infections as women who immediately had breast reconstruction using their own tissue, according to a study published yesterday.
The article in Archives of Surgery, which examined the medical records of breast surgery patients at Barnes-Jewish Hospital in St. Louis from mid-1999 to mid-2002, found that 50 of 949 patients acquired an infection at the surgical site within a year after surgery.
Roughly 12 percent of the infections occurred in mastectomy patients who immediately had implant surgery, compared with roughly 6 percent of infections in those who immediately had breast reconstruction using their own abdominal tissue, the study said. In noncancer patients, about 1 percent of infections occurred after breast reductions and no infections occurred after breast augmentation using implants, the study said.
“The bottom line is that implants are associated with an increased risk of infection in breast cancer patients,” said Margaret A. Olsen, the lead author of the study and a research assistant professor of medicine at Washington University School of Medicine in St. Louis. “The question is what factors contribute to this increased risk and what can be done to prevent it?”
The study noted whether patients had other medical conditions like diabetes, but it did not report how many underwent radiation or other treatments that might have played a role in the infections.
The study did analyze the cost to the medical center of each infection — about $4,100 per patient — a hospital-acquired complication not covered by managed care, she said.
But both kinds of reconstructive surgery entail risk.
Dr. Stephen R. Colen, the chairman of plastic and reconstructive surgery at Hackensack University Medical Center in New Jersey, said operations using abdominal tissue took several hours longer than implant surgery, increasing the risk of blood clots and lung embolisms. In 2 percent of patients, the transplanted tissue dies, requiring further surgery, Dr. Colen said.
But implant reconstruction inserts a foreign object into the body, providing a surface on which bacteria may grow. And implantation involves a series of procedures — including one surgery to insert a skin-stretching device in the chest, followed by saline injections to expand the breast, another surgery to put in a permanent implant and a final surgery to attach a nipple — creating more occasions for infection to occur, Dr. Colen said.
Dr. Keith E. Brandt, a professor of plastic and reconstructive surgery at Washington University and an author of the study, said all patients received prophylactic antibiotics at the time of surgery. But postsurgical treatments for breast cancer, like radiation, may weaken the body’s ability to fight infection.
January 22, 2008
Study Says Implants Double Risk of Infection in Breast Reconstruction
By NATASHA SINGER
Breast cancer patients who had reconstructive surgery using implants immediately after mastectomies were twice as likely to acquire infections as women who immediately had breast reconstruction using their own tissue, according to a study published yesterday.
The article in Archives of Surgery, which examined the medical records of breast surgery patients at Barnes-Jewish Hospital in St. Louis from mid-1999 to mid-2002, found that 50 of 949 patients acquired an infection at the surgical site within a year after surgery.
Roughly 12 percent of the infections occurred in mastectomy patients who immediately had implant surgery, compared with roughly 6 percent of infections in those who immediately had breast reconstruction using their own abdominal tissue, the study said. In noncancer patients, about 1 percent of infections occurred after breast reductions and no infections occurred after breast augmentation using implants, the study said.
“The bottom line is that implants are associated with an increased risk of infection in breast cancer patients,” said Margaret A. Olsen, the lead author of the study and a research assistant professor of medicine at Washington University School of Medicine in St. Louis. “The question is what factors contribute to this increased risk and what can be done to prevent it?”
The study noted whether patients had other medical conditions like diabetes, but it did not report how many underwent radiation or other treatments that might have played a role in the infections.
The study did analyze the cost to the medical center of each infection — about $4,100 per patient — a hospital-acquired complication not covered by managed care, she said.
But both kinds of reconstructive surgery entail risk.
Dr. Stephen R. Colen, the chairman of plastic and reconstructive surgery at Hackensack University Medical Center in New Jersey, said operations using abdominal tissue took several hours longer than implant surgery, increasing the risk of blood clots and lung embolisms. In 2 percent of patients, the transplanted tissue dies, requiring further surgery, Dr. Colen said.
But implant reconstruction inserts a foreign object into the body, providing a surface on which bacteria may grow. And implantation involves a series of procedures — including one surgery to insert a skin-stretching device in the chest, followed by saline injections to expand the breast, another surgery to put in a permanent implant and a final surgery to attach a nipple — creating more occasions for infection to occur, Dr. Colen said.
Dr. Keith E. Brandt, a professor of plastic and reconstructive surgery at Washington University and an author of the study, said all patients received prophylactic antibiotics at the time of surgery. But postsurgical treatments for breast cancer, like radiation, may weaken the body’s ability to fight infection.
Driving for Noodles
How far would you drive for a good bowl of noodles? (The question reminds me of that old cigarette jingle, "I'd walk a mile for a Camel.") Now that the simple bowl of ramen has nearly reached cult status in Los Angeles, I think many ramen lovers would answer "far." From the San Gabriel Valley to J-town. Down the 405 to the South Bay. Across town to the west side.
And why venture so far from home? To paraphrase notorious bank robber Willy Sutton, because that's where the ramen is. Or at least the ramen worth eating, according to a list compiled by rameniac food blogger Rickmond Wong, dubbed the "Rock Star of Ramen" by the LA Times.
In my quest to visit rameniac's top five picks (I have two more to go), I'm logging extra miles on the Prius and contributing a little more to global warming.
But it is possible to satisfy a yen for ramen while being kind to the planet, thanks to "the rule of three," a little life-changing strategy I picked up from Paula. It's not as kinky as it sounds. The trick is to cluster a far-flung outing with two other nearby activities.
Since Santouka, Wong's number-one favorite ramen shop, is located in the food court of the westside Mitsuwa Market, this took less effort than making a Cup O' Noodles.
I stopped at Mitsuwa to pick up special o-sembe, or rice crackers, to include in my Dad's birthday package. He became addicted to these during the occupation of Japan more than 55 years ago. And, wouldn't ya' know it, you still can't buy a rice cracker anywhere near Ravenswood, West Virginia.
I also purchased prizes for my niece Emily, one of the two winners of the "What Would Susan Eat" contest. (Since she lives in a Duke's state, she gets an "only in LA" prize.) I chose these snacks for my great nephew Will because I think it's my job to remind him that he's one-eighth Japanese.
I couldn't resist buying these ultra-thin, chocolate-covered MEN'S Pockys for Emily. What makes this product masculine? The bitter chocolate? The dangerous packaging with chocolate draped like a noose? The smoking cigar effect? Are men actually purchasing these or are women buying them for the men in their lives? My hunch is that rebellious women are rising up and scarfing down on this "forbidden" confection. "Men's" Pocky be damned!
My friend Barbara F, the other winner of the WWSE contest, lives nearby and joined me for a bowl of ramen. Here she is with her coveted jar of Duke's mayonnaise.
So far, so good. I've caught up with a friend. I've passed the mayo. I've purchased snacks from Mitsuwa for a birthday gift and a WWSE prize. Isn't that already more than a threesome? But what about the ramen? Would eating a superior bowl of ramen be like hitting a home run?
Ah, the ramen. Beautiful presentation. Slightly chewy noodles. Complex broth. Buttery pork. I think it was the best bowl of ramen I've ever had - a home run out of the park with the (rule of three) bases loaded.
How far would I drive for a bowl of noodles? Definitely to Santouka again and again.
Santouka Ramen
Mitsuwa Market Food Court
3760 Centinela Ave.,
Los Angeles, CA 90066
10:00am - 8:00pm
This post will also appear at www.openmoutinsertfork.blogspot.com
And why venture so far from home? To paraphrase notorious bank robber Willy Sutton, because that's where the ramen is. Or at least the ramen worth eating, according to a list compiled by rameniac food blogger Rickmond Wong, dubbed the "Rock Star of Ramen" by the LA Times.
In my quest to visit rameniac's top five picks (I have two more to go), I'm logging extra miles on the Prius and contributing a little more to global warming.
But it is possible to satisfy a yen for ramen while being kind to the planet, thanks to "the rule of three," a little life-changing strategy I picked up from Paula. It's not as kinky as it sounds. The trick is to cluster a far-flung outing with two other nearby activities.
Since Santouka, Wong's number-one favorite ramen shop, is located in the food court of the westside Mitsuwa Market, this took less effort than making a Cup O' Noodles.
I stopped at Mitsuwa to pick up special o-sembe, or rice crackers, to include in my Dad's birthday package. He became addicted to these during the occupation of Japan more than 55 years ago. And, wouldn't ya' know it, you still can't buy a rice cracker anywhere near Ravenswood, West Virginia.
I also purchased prizes for my niece Emily, one of the two winners of the "What Would Susan Eat" contest. (Since she lives in a Duke's state, she gets an "only in LA" prize.) I chose these snacks for my great nephew Will because I think it's my job to remind him that he's one-eighth Japanese.
I couldn't resist buying these ultra-thin, chocolate-covered MEN'S Pockys for Emily. What makes this product masculine? The bitter chocolate? The dangerous packaging with chocolate draped like a noose? The smoking cigar effect? Are men actually purchasing these or are women buying them for the men in their lives? My hunch is that rebellious women are rising up and scarfing down on this "forbidden" confection. "Men's" Pocky be damned!
So far, so good. I've caught up with a friend. I've passed the mayo. I've purchased snacks from Mitsuwa for a birthday gift and a WWSE prize. Isn't that already more than a threesome? But what about the ramen? Would eating a superior bowl of ramen be like hitting a home run?
Ah, the ramen. Beautiful presentation. Slightly chewy noodles. Complex broth. Buttery pork. I think it was the best bowl of ramen I've ever had - a home run out of the park with the (rule of three) bases loaded.
How far would I drive for a bowl of noodles? Definitely to Santouka again and again.
Santouka Ramen
Mitsuwa Market Food Court
3760 Centinela Ave.,
Los Angeles, CA 90066
10:00am - 8:00pm
This post will also appear at www.openmoutinsertfork.blogspot.com
Monday, January 21, 2008
The "C" Word
Not cancer.
Not Cindy.
The word of the day is chorizo.
For the uninitiated, chorizo is a fatty pork sausage seasoned with chili, paprika and garlic. Chorizo—and eggs—is what Susan tucked into this morning. (Oh, and rosemary potatoes, tortillas, and a dab of guacamole.)
Now that I'm over my cold, I figured it was safe to see Smooky. We decided to meet at The Taco Spot, one of our favorite hangouts, for a late breakfast. Her platter was enormous, but she ate most of it, and then packed up the rest for an afternoon snack.
I'm here to say she is chowing down the calories. But when will her metabolism get the memo?
Our girl is skinny. When she says she has "no junk in the trunk," she's lying like a dawg. There is no trunk! She has no booty.
Frankly, I don't know how her pants stay up. (Suspenders? Duct tape? Faith?)
However, now that her taste buds have bounced back, she can once again enjoy subtleties in flavor and seasonings. And if she keeps eating like a longshoreman, she's bound to return to her fightin' weight very soon.
In the meantime, feel free to suggest your favorite high-calorie, diet-busting treat. You may inspire Susan to binge on your behalf.
Here are my ideas:
1. Thirsty? Conserve water. Try a nice milkshake or two.
2. Grilled cheese sandwiches with double cheese.
3. Deep fried…anything.
Not Cindy.
The word of the day is chorizo.
For the uninitiated, chorizo is a fatty pork sausage seasoned with chili, paprika and garlic. Chorizo—and eggs—is what Susan tucked into this morning. (Oh, and rosemary potatoes, tortillas, and a dab of guacamole.)
Now that I'm over my cold, I figured it was safe to see Smooky. We decided to meet at The Taco Spot, one of our favorite hangouts, for a late breakfast. Her platter was enormous, but she ate most of it, and then packed up the rest for an afternoon snack.
I'm here to say she is chowing down the calories. But when will her metabolism get the memo?
Our girl is skinny. When she says she has "no junk in the trunk," she's lying like a dawg. There is no trunk! She has no booty.
Frankly, I don't know how her pants stay up. (Suspenders? Duct tape? Faith?)
However, now that her taste buds have bounced back, she can once again enjoy subtleties in flavor and seasonings. And if she keeps eating like a longshoreman, she's bound to return to her fightin' weight very soon.
In the meantime, feel free to suggest your favorite high-calorie, diet-busting treat. You may inspire Susan to binge on your behalf.
Here are my ideas:
1. Thirsty? Conserve water. Try a nice milkshake or two.
2. Grilled cheese sandwiches with double cheese.
3. Deep fried…anything.
transplant doc visit
The visit to the Lung Transplant doctors went well today. I am still not at 100% lung functionality yet still hanging around 79 - 80% range right now so my goal for next months visit is to be at about 85% functionality.
Bring on the Calories!
After my first round of chemo in 2007, my City of Hope dietitian advised me to concentrate on eating "nutrient dense foods." I started scrutinizing every morsel of food that went into my mouth and was surprised to find out how many "nutrient neutral" foods I was consuming.
When I replaced filler foods with power-packed ones, a funny thing happened. I slowly started to shed the extra weight I'd gained during my "middle-age spread." It was my new way of eating, not the chemo or the cancer, that brought me down to a look I like to call "willowy" or "svelte."
But then I checked in for my stem cell transplant in November. With no appetite, I peeled another five pounds off my already lean frame. No mystery there.
My weight remained the same during my recent 10-day stay, but a strange thing has happened since I've returned home. In spite of my switch from "nutrient dense" to "calorie dense" foods, I've lost another five pounds. Today at CoH I tipped the scales at 120 pounds on a 5'10" frame. I look in the mirror and I don't like what I see. I no longer see svelte or willowy. I see skinny.
In most cases, Prednisone packs on the pounds, but Dr. Forman said that, in some cases, it speeds up the internal metabolism and patients actually lose weight. What a diet!
Since my last weigh-in five days ago, I've eaten (among other things) crunchy egg rolls from Golden Deli; Vietnamese Banh Mi sandwiches from two Rosemead shops; cups of French-pressed coffee with sweetened condensed milk; Indian food from Tantra in Silverlake; rich home-made pumpkin soup with half and half; my favorite steak chilli and corn bread from Smitty's; chorizo and eggs with all the high-fat trimmings at the Taco Spot; gelato with macaroons from Pazzo Gelato; and more than a dozen of "Alexis's favorite chocolate chip cookies" from the Martha Stewart recipe.
After I taper off the Prednisone, my metabolism will likely return to normal. In the meantime, it's like being in high school again. I can eat all the high-fat foods I want all the time and not worry about gaining weight. (Actually, it's better than high school 'cause now I don't have to worry about a zit erupting on my chin or if MJ knows I'm alive.)
Call me lucky if you like. Just don't call me skinny.
When I replaced filler foods with power-packed ones, a funny thing happened. I slowly started to shed the extra weight I'd gained during my "middle-age spread." It was my new way of eating, not the chemo or the cancer, that brought me down to a look I like to call "willowy" or "svelte."
But then I checked in for my stem cell transplant in November. With no appetite, I peeled another five pounds off my already lean frame. No mystery there.
My weight remained the same during my recent 10-day stay, but a strange thing has happened since I've returned home. In spite of my switch from "nutrient dense" to "calorie dense" foods, I've lost another five pounds. Today at CoH I tipped the scales at 120 pounds on a 5'10" frame. I look in the mirror and I don't like what I see. I no longer see svelte or willowy. I see skinny.
In most cases, Prednisone packs on the pounds, but Dr. Forman said that, in some cases, it speeds up the internal metabolism and patients actually lose weight. What a diet!
Since my last weigh-in five days ago, I've eaten (among other things) crunchy egg rolls from Golden Deli; Vietnamese Banh Mi sandwiches from two Rosemead shops; cups of French-pressed coffee with sweetened condensed milk; Indian food from Tantra in Silverlake; rich home-made pumpkin soup with half and half; my favorite steak chilli and corn bread from Smitty's; chorizo and eggs with all the high-fat trimmings at the Taco Spot; gelato with macaroons from Pazzo Gelato; and more than a dozen of "Alexis's favorite chocolate chip cookies" from the Martha Stewart recipe.
After I taper off the Prednisone, my metabolism will likely return to normal. In the meantime, it's like being in high school again. I can eat all the high-fat foods I want all the time and not worry about gaining weight. (Actually, it's better than high school 'cause now I don't have to worry about a zit erupting on my chin or if MJ knows I'm alive.)
Call me lucky if you like. Just don't call me skinny.
Saturday, January 19, 2008
Replacing, Refilling, Ending, Not Ending
I had intended to end this blog on Jan. 16, the anniversary of my semi-diagnosis, but I find I have more to say. For instance, about implants. The New York Times reported on Thursday about problems with breast implants. First of all, they don't last. Second of all, they can leak and spill and scar. All good reasons not to have an implant, L said, reading over my shoulder. But you notice women's breasts, I said. I didn't marry you for your breasts, he said. I sound like I'm arguing in favor of implants. I kept thinking I would have an implant after I get down to my ideal weight, because if you get an implant and lose weight, the breast stays the same size. But the more and more I live with one breast, the more natural it seems. And the more I hear about how you always feel the implant floating inside you, the less inclined I am to get the surgery.
There's no news peg to the Times piece, except an anti-implant documentary that came out in 2007. It had a NYC press screening in November, and will be shown in Boston at the end of this month. How very odd that it was already shown in Dallas and Buffalo and has a screening in Albuquerque, but there are no plans for it to be shown here. Something to look into. You can read an op-ed that came out before the film here.
I have to admit that I've been feeling lazy for not getting an implant. Or reconstruction, as it's called. Maybe feeling lazy and slatternly for going around braless and one-breastless. O gosh, lost a breast and didn't even sew one back on. As if it were a button fallen off a coat.
There's no news peg to the Times piece, except an anti-implant documentary that came out in 2007. It had a NYC press screening in November, and will be shown in Boston at the end of this month. How very odd that it was already shown in Dallas and Buffalo and has a screening in Albuquerque, but there are no plans for it to be shown here. Something to look into. You can read an op-ed that came out before the film here.
I have to admit that I've been feeling lazy for not getting an implant. Or reconstruction, as it's called. Maybe feeling lazy and slatternly for going around braless and one-breastless. O gosh, lost a breast and didn't even sew one back on. As if it were a button fallen off a coat.
Friday, January 18, 2008
Hope
A new friend recently told me that my own story I published on my web site may help people in their physical battle with appendiceal cancer as much as their medical treatment, because my story offers hope. That maybe knowing there is a long-term survivor might provide a certain amount of healing in itself.
Hope.
Especially after I was diagnosed with cancer, hope became my golden word. I recently read this quote: "There is no worse death than the end of hope." ~ Pelagius.
I am Christian, and everyone quotes the passages in I Corinthians 13 about love, but the Bible speaks of three great virtues; faith, hope and love. Love may be the greatest, but hope is not an insignificant virtue. I love the word hope.
I will never know why I have survived what I was once told was a terminal illness as long as I have. But in contemplating hope, I was recently recalling all of the tidbits of hope I clung to after I was diagnosed.
I found medical statistics that said 10% of those with signet ring appendiceal cancer survive...someone had to be in the 10%, why not me?
I clung closely to the knowledge that I was on international prayer chains. Many people were praying for me, and though I knew God often answered "no" to prayers for healing, I hoped I might get a "yes". I read the book someone gave me "The Healing Power of the Christian Mind" before CT scans.
I had great medical care, that gave me hope. My surgeon knew the statistics for my particular cancer were dismal, but he never talked about that; instead he told me after my surgery when I insisted on dressing in street clothes and only going to bed to sleep that I was a very strong person, and if anyone could survive, I had a good chance. I clung to his words.
A chemo nurse I had once told me, "Oh, you'll be fine, you'll make it". That blew me away, she was a cancer nurse who knew my odds, and she knew I was a nurse, but she seemed so sure I'd be the one to survive. Maybe she had a way of knowing who would survive, a kind of sixth sense. I trusted a nurse's gut feelings as my own had always been right, so that gave me incredible hope.
I read stories and articles about those who had defied their odds of dying of cancer. Of those who had had miraculous healings. Why not me?
I read about mind-body medicine, I listened to tapes about quantum healing, I tried visualization in hopes I could make my immune system destroy stray cancer cells.
Anything.....I clung to anything that gave me a tiny bit of hope of staying alive to raise my kids. I kept a written journal of reasons why I might hope to survive and read it whenever I got discouraged.
But in the end I have learned and have come to accept that there is a greater hope. Because of my involvement in the cancer community and with hospice, I have come to accept that none of us get out of this life alive......at least not in this body. I had to contemplate that a lot. Cancer survival is just a little more time in this temporary here and now.
I have a very great belief in an afterlife now, a heaven. To me it is a reality. I have talked to people who have had near death experiences and who cried for days when they came back and left what they knew to be their "real" home. I've talked with patients who have seen before death their loved ones who went before them coming to take them home. A little boy in my church, just before he died of brain cancer was winessed having a cheerful and animated conversation with someone no one else could see, he also then excitedly pointed to a corner of the house where he said he saw his dog, he said his dog was back (his dog had died several months before). I've read several books that have inspired me to think beyond this life, "In Light of Eternity" and "Heaven" are two.
Today I will go to the wake of another cancer patient who was a friend. A recurrence of her cancer came on fast and furious. Just 6 months ago we were working together, she had just attended her daughter's wedding, she was fine. She had hoped to stay alive.....but I know she is still alive, and she is free and no longer suffering. She is home.
I'm so glad my hope now isn't just for life in this realm. I'm so glad my hope now extends beyond this life, that hope for me is now bigger and encompasses more....so much more.
I am never without hope.
Hope.
Especially after I was diagnosed with cancer, hope became my golden word. I recently read this quote: "There is no worse death than the end of hope." ~ Pelagius.
I am Christian, and everyone quotes the passages in I Corinthians 13 about love, but the Bible speaks of three great virtues; faith, hope and love. Love may be the greatest, but hope is not an insignificant virtue. I love the word hope.
I will never know why I have survived what I was once told was a terminal illness as long as I have. But in contemplating hope, I was recently recalling all of the tidbits of hope I clung to after I was diagnosed.
I found medical statistics that said 10% of those with signet ring appendiceal cancer survive...someone had to be in the 10%, why not me?
I clung closely to the knowledge that I was on international prayer chains. Many people were praying for me, and though I knew God often answered "no" to prayers for healing, I hoped I might get a "yes". I read the book someone gave me "The Healing Power of the Christian Mind" before CT scans.
I had great medical care, that gave me hope. My surgeon knew the statistics for my particular cancer were dismal, but he never talked about that; instead he told me after my surgery when I insisted on dressing in street clothes and only going to bed to sleep that I was a very strong person, and if anyone could survive, I had a good chance. I clung to his words.
A chemo nurse I had once told me, "Oh, you'll be fine, you'll make it". That blew me away, she was a cancer nurse who knew my odds, and she knew I was a nurse, but she seemed so sure I'd be the one to survive. Maybe she had a way of knowing who would survive, a kind of sixth sense. I trusted a nurse's gut feelings as my own had always been right, so that gave me incredible hope.
I read stories and articles about those who had defied their odds of dying of cancer. Of those who had had miraculous healings. Why not me?
I read about mind-body medicine, I listened to tapes about quantum healing, I tried visualization in hopes I could make my immune system destroy stray cancer cells.
Anything.....I clung to anything that gave me a tiny bit of hope of staying alive to raise my kids. I kept a written journal of reasons why I might hope to survive and read it whenever I got discouraged.
But in the end I have learned and have come to accept that there is a greater hope. Because of my involvement in the cancer community and with hospice, I have come to accept that none of us get out of this life alive......at least not in this body. I had to contemplate that a lot. Cancer survival is just a little more time in this temporary here and now.
I have a very great belief in an afterlife now, a heaven. To me it is a reality. I have talked to people who have had near death experiences and who cried for days when they came back and left what they knew to be their "real" home. I've talked with patients who have seen before death their loved ones who went before them coming to take them home. A little boy in my church, just before he died of brain cancer was winessed having a cheerful and animated conversation with someone no one else could see, he also then excitedly pointed to a corner of the house where he said he saw his dog, he said his dog was back (his dog had died several months before). I've read several books that have inspired me to think beyond this life, "In Light of Eternity" and "Heaven" are two.
Today I will go to the wake of another cancer patient who was a friend. A recurrence of her cancer came on fast and furious. Just 6 months ago we were working together, she had just attended her daughter's wedding, she was fine. She had hoped to stay alive.....but I know she is still alive, and she is free and no longer suffering. She is home.
I'm so glad my hope now isn't just for life in this realm. I'm so glad my hope now extends beyond this life, that hope for me is now bigger and encompasses more....so much more.
I am never without hope.
Detour
Yesterday morning, I began my trek home to Mifflintown, Pennsylvania. I have been so excited for this trip because it's been a year and half since the last time I was there, and also this is the first time in seven years that I've gone there by myself (without the little darlings and their father). Let me tell you what--THANK GOD they did not come along. I should have known--traveling at this time of year sucks ass, especially when you have to make a stop in freakin' Chicago.
I think I heard about ten times yesterday at O'Hare that Chicago is either the busiest airport in the world, the largest airport in the world, or both. In any case, add inclement weather to these claims, and you get to spend some time in hell.
I didn't see any horrendous weather myself, but there were apparently high winds which caused most of the flights to be grossly delayed or canceled. So, after a very lovely and pleasant flight from Vancouver to Chicago, I arrived to find that all was still well with my flight to Harrisburg. Then suddenly, the flight was delayed an hour and a half. Soon enough, the flight was delayed another hour and a half AND they changed terminals. I don't know if you've ever been to O'Hare, but when they do some shit like change terminals, it means you gotta run about 5 miles to the other terminal. So then I'm waiting around some more, went to the washroom, came out, checked the monitor--and the flight disappeared! I went to another terminal where there was still one flight to Harrisburg posted, and sure enough was told that my flight had died after all.
So then I was put on standby for the last remaining flight to Harrisburg and was told that if I didn't make it on this flight, the earliest I could catch a plane to Harrisburg would be 6pm the next day. And I'd have to pay for my own hotel room, thank you very much.
Things weren't looking good. The flight I was on standby on kept getting delayed more and more, just like my original flight. So then I thought, fuck this, I'm going to Pittsburgh.
My BFF Lisa was planning on driving to Mifflintown the next day to see me anyway, so I figured, shit, might as well go with her! So luckily, there was room for me on the next flight to Pittsburgh which was leaving....oh shit--boarding now--in yet another terminal. So I RAN my ass off and made it just in time! Phew! My bag, however, would have to wait for the flight to Harrisburg.
Luckily, I packed all the meds I could with me on my carry on (except my magic mouthwash for my mouth sores, which I checked in with an ice pack because the container was too big), so I wasn't really missing anything for the night.
And I was soooooo happy to see Lisa and finally meet her good friend Larry, who is a sweetheart, really nice guy! So things worked out in the end. We went to Eat 'n Park, and I had the best breakfast meal of my life: two poached eggs over corned beef hash and potato pancakes! Yum!
Now, Lisa's at work, and I'm just chillin' in her pad. We stayed up last night watching some cheezy, hilarious home movie we made over 10 years ago.
You know what I would hate? If someone was hanging out at my house and taking pictures and going through my things. But Lisa and I are long-time friends, so I hope she can forgive me for what I'm about to show you of my morning so far at her pad...
"Hello? Can someone get me out of here?"
"AAHHHHHH!!! Someone cut the cord and must be on his way to kill me!"
Thank god I have Jesus to save me.
Maybe if I hide behind this curtain, he won't be able to find me and get me.
Or I could practice self-defense with this fake fist.
No way! A ladybug sock monkey! Sweet--I'm sure this will help me against the raging lunatic who cut the phone cord.
Forget the raging lunatic...He doesn't stand a chance against me and Lola.
I love Lola. Like, a lot.
Hee hee, I'm hanging out with different circles.
There's a ginormous lighted snowflake falling on my head.
When in doubt, raid Lisa's closest, wear one of her coats, climb on her bed, and take a sultry picture.
THE END
I think I heard about ten times yesterday at O'Hare that Chicago is either the busiest airport in the world, the largest airport in the world, or both. In any case, add inclement weather to these claims, and you get to spend some time in hell.
I didn't see any horrendous weather myself, but there were apparently high winds which caused most of the flights to be grossly delayed or canceled. So, after a very lovely and pleasant flight from Vancouver to Chicago, I arrived to find that all was still well with my flight to Harrisburg. Then suddenly, the flight was delayed an hour and a half. Soon enough, the flight was delayed another hour and a half AND they changed terminals. I don't know if you've ever been to O'Hare, but when they do some shit like change terminals, it means you gotta run about 5 miles to the other terminal. So then I'm waiting around some more, went to the washroom, came out, checked the monitor--and the flight disappeared! I went to another terminal where there was still one flight to Harrisburg posted, and sure enough was told that my flight had died after all.
So then I was put on standby for the last remaining flight to Harrisburg and was told that if I didn't make it on this flight, the earliest I could catch a plane to Harrisburg would be 6pm the next day. And I'd have to pay for my own hotel room, thank you very much.
Things weren't looking good. The flight I was on standby on kept getting delayed more and more, just like my original flight. So then I thought, fuck this, I'm going to Pittsburgh.
My BFF Lisa was planning on driving to Mifflintown the next day to see me anyway, so I figured, shit, might as well go with her! So luckily, there was room for me on the next flight to Pittsburgh which was leaving....oh shit--boarding now--in yet another terminal. So I RAN my ass off and made it just in time! Phew! My bag, however, would have to wait for the flight to Harrisburg.
Luckily, I packed all the meds I could with me on my carry on (except my magic mouthwash for my mouth sores, which I checked in with an ice pack because the container was too big), so I wasn't really missing anything for the night.
And I was soooooo happy to see Lisa and finally meet her good friend Larry, who is a sweetheart, really nice guy! So things worked out in the end. We went to Eat 'n Park, and I had the best breakfast meal of my life: two poached eggs over corned beef hash and potato pancakes! Yum!
Now, Lisa's at work, and I'm just chillin' in her pad. We stayed up last night watching some cheezy, hilarious home movie we made over 10 years ago.
You know what I would hate? If someone was hanging out at my house and taking pictures and going through my things. But Lisa and I are long-time friends, so I hope she can forgive me for what I'm about to show you of my morning so far at her pad...
"Hello? Can someone get me out of here?"
"AAHHHHHH!!! Someone cut the cord and must be on his way to kill me!"
Thank god I have Jesus to save me.
Maybe if I hide behind this curtain, he won't be able to find me and get me.
Or I could practice self-defense with this fake fist.
No way! A ladybug sock monkey! Sweet--I'm sure this will help me against the raging lunatic who cut the phone cord.
Forget the raging lunatic...He doesn't stand a chance against me and Lola.
I love Lola. Like, a lot.
Hee hee, I'm hanging out with different circles.
There's a ginormous lighted snowflake falling on my head.
When in doubt, raid Lisa's closest, wear one of her coats, climb on her bed, and take a sultry picture.
THE END
SMU (Big Idea)
I want to participate in the SMU Big Idea program, but I don't know if old students (ha ha I am an old student now) can participate. The big idea I have involves spreading literature, awareness, and simply getting potential organ/tissue donors to communicate with friends, family, and LOVED ones. The most important thing to note when dealing w/ organ/tissue donation is communication is the key, signing up is fine but communicate your wishes to your family, or next of kin so there are no surprises.
oncologist visit
Was nervous about my visit today, I had nightmares that I would show up and they would tell me the cancer had returned. Fortunately for me that was just a dream, I still am all clear (cancer free).
I have also been asked to participate in Lung Cancer SPORE's as a patient advocate, I don't exactly understand my entire role but I am hoping to help effect change so we can gain a better understanding about Lung Cancer and how to detect it earlier and possibly derive better treatments.
I have also been asked to participate in Lung Cancer SPORE's as a patient advocate, I don't exactly understand my entire role but I am hoping to help effect change so we can gain a better understanding about Lung Cancer and how to detect it earlier and possibly derive better treatments.
Neurologist (Another doctor joins team Dash)
My Feet, My feet, my feet HURT. (A long lingering side effect from chemo (Ratt Poison #9))
Orthodics have not worked, so now I am attacking this neuropathy with new meds. (lidoderm patches, cymbalta). I think I will lean more towards the patches rather than taking the Cymbalta as I just don't won't to pop any more pills than I have to.
Oh well kick rocks.
Orthodics have not worked, so now I am attacking this neuropathy with new meds. (lidoderm patches, cymbalta). I think I will lean more towards the patches rather than taking the Cymbalta as I just don't won't to pop any more pills than I have to.
Oh well kick rocks.
Thursday, January 17, 2008
Homecoming Accessories
I checked out of Hotel Hope on Tuesday with two bags of dirty laundry, a half-used box of Kleenex and a dazzling set of new accessories.
Drugs: I'm still taking the steroids and a counter full of newly prescribed antibiotics.
Temporary Disabled Person Parking Placard: What's good in more places than the cancer card? What has more credibility than chemo brain? My Prius's latest accessory, the temporary handicapped placard, is good until July 2008, but I think I'll ditch it before the end of the month. And, no, you may not borrow it for your trip to the mall.
Day 55, Wednesday, January 9, 2008
(Numbers in parantheses are normal ranges.)
WBC 0.7 (4.0-11)
RBC 2.44 (3.8-5.2)
HGB 8.2 (11.5-15.5)
PLT 37 (150-350)
Day 62, Wednesday, January 16, 2008
WBC 4.0 (4.0-11) NORMAL!
RBC 3.37 (3.8-5.2)
HGB 11.1 (11.5-15.5) ALMOST NORMAL!
PLT 55 (150-350)
Appetite: For the first time in nearly three months, I have an appetite (thank you, steroids), and I can actually taste the food. I celebrated my stellar blood counts and the return of my taste buds by stopping at a whole-in-the-wall Mexican joint that's just a few blocks from CoH.
When it comes to Mexican food, I say don't listen to a north-of-the-border food critic, even if he does have a Pulitzer Prize on his wall (or is it on the mantel?). Listen to the CoH cleaning staff and watch where the gardeners go. They steered me to La Paloma, where I enjoyed a home-made pork tamale and bowl of cocido, a traditional beef shank vegetable soup.
Drugs: I'm still taking the steroids and a counter full of newly prescribed antibiotics.
Temporary Disabled Person Parking Placard: What's good in more places than the cancer card? What has more credibility than chemo brain? My Prius's latest accessory, the temporary handicapped placard, is good until July 2008, but I think I'll ditch it before the end of the month. And, no, you may not borrow it for your trip to the mall.
Flying Report Card: I went in for a blood draw yesterday and found that my blood levels are soaring again.
Day 55, Wednesday, January 9, 2008
(Numbers in parantheses are normal ranges.)
WBC 0.7 (4.0-11)
RBC 2.44 (3.8-5.2)
HGB 8.2 (11.5-15.5)
PLT 37 (150-350)
Day 62, Wednesday, January 16, 2008
WBC 4.0 (4.0-11) NORMAL!
RBC 3.37 (3.8-5.2)
HGB 11.1 (11.5-15.5) ALMOST NORMAL!
PLT 55 (150-350)
Appetite: For the first time in nearly three months, I have an appetite (thank you, steroids), and I can actually taste the food. I celebrated my stellar blood counts and the return of my taste buds by stopping at a whole-in-the-wall Mexican joint that's just a few blocks from CoH.
When it comes to Mexican food, I say don't listen to a north-of-the-border food critic, even if he does have a Pulitzer Prize on his wall (or is it on the mantel?). Listen to the CoH cleaning staff and watch where the gardeners go. They steered me to La Paloma, where I enjoyed a home-made pork tamale and bowl of cocido, a traditional beef shank vegetable soup.
Wednesday, January 16, 2008
Sock Monkey Take-Over
I felt a little playful today, as I was trying to get a bunch of stuff done before I head off to PA in the morning. I thought, hey, it's kinda funny that I have an evil sock monkey hat and a sock monkey cotton hankie that I sewed myself. So here's a little fun foto thing for you:
And now, I will be recognizable around Mifflintown when I'm there, since this is all that I'll be wearing. Be on the look out for my knit horns--and offer me a bag of Hartley's while you're at it, will ya?
And now, I will be recognizable around Mifflintown when I'm there, since this is all that I'll be wearing. Be on the look out for my knit horns--and offer me a bag of Hartley's while you're at it, will ya?
Anniversary & the Ritual Crushing of the Pills
On Jan. 16 a year ago, the radiologist at the Mammogram Factory was pretty grim as she looked at my ultrasound and told me I needed a core-needle biopsy. And so the fun began.
I decided that the best way to commemorate this event was to grind up the pills that I'd been issued for chemo side-effects. I mean, my understanding is that I can't have any more chemo, and if there were some kind of chemo for me in the future, I'm sure the drs would issue newerbetterstrongerlongerlasting pills to take.
The party couldn't start till 10 because I had class tonight. It's hard to get people to come to a party on a Wednesday night that begins at 10, especially when first advertised as providing no refreshments and lasting only 15 minutes. I loosened up but the damage was done. Only our loyal voisins de palier came (We know where they live) and we drank champagne, ate cheese and crackers and vegetable dumplings, and crushed the pills. L bought me flowers. That's L, above, crushing. My neighbor A wanted me to put the resulting powder in an urn. Or burn it. Or sell it on the street. I gathered the bits into a pill bottle and and put it in a gold mesh bag and I'm not sure what I'll do with it. I'll decide soon. I think it should stay enclosed so that it doesn't immediately contaminate the lake. My friend D sent me a study not long ago about fish containing Prozac because people excreted the drugs, which went into the water supply. Really, what's the harm? You end up with a little gentler fish and human population. And what's wrong with that??
My friend J is kind of nostalgic for the year she was diagnosed and treated, because she appreciated everything so much. I never had that quickening. At least not much. I don’t think my cancer was a blessing in disguise because it made me value life more, or friends or family more. Though friends and family came through in ways I hadn’t expected. Cancer didn’t cause me to bend more deeply to smell the flowers. It hasn’t made me deeper or wiser though I have become more aware of the manmade causes of the disease. The biggest change from the cancer is physical--my left breast is MIA.
All I can say for sure that I’ve learned is how to respond when someone has cancer. And I would prefer to have learned that second-hand.
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