Hi Everybody,
This is Matthew. I want all of you to know that Jennifer is out of surgery and everything went well. I just finished speaking with the surgeon and he said that it was a textbook surgery. Thank you all for all of your support.
I'm sure that Jen will be in contact with you as soon as she feels better.
Warm Regards,
Matthew
[written yesterday, Oct, 18, 2010 @502 pm EST]
Tuesday, October 19, 2010
Sunday, October 17, 2010
Some final thoughts before the surgery
So it's almost midnight on the morning before my bi-lateral mastectomy surgery, and I am having an intense hot flash, one of the consequences of going into sudden, pre-mature menopause. Unlike with regular menopause, where your body has a few years to adjust to changing hormone levels, for women who have ovarian function shut down through chemo, hormone fluctuation is immediate and, in my case, results in extreme hot flashes "wooshing" on me out of the blue. But aside from this lingering side effect (or new after-effect), the other residuals from chemo -- like the change in my taste buds, the neuropathy in my fingertips, joint/muscle pain, nausea -- are all a distant memory. My hair is finally growing back (Matthew's new nickname for me is "Peachy" because I have peach fuzz covering my skull, but more importantly I have little black hairs growing through the peach fuzz, and I'm hoping to have a full head covering by Christmas. My energy level waxes and wanes--it will probably be a few months before I feel 100% again--with some women it can take a full year to be back to their post-chemo selves. And, of course, the surgery will take a few weeks on the healing end as well--in fact, I expect to be off of emailing (and blogging) for a good week.
[Aside: Although Matthew will fill in as a guest blogger for me tomorrow or Tuesday to give a post-surgical update].
So do I have any profound thoughts to share before surgery?
Nope.
But, I do have some observations.
*I am doing OK; however, I think that my body is sublimating the stress and putting it all in my trapezius muscles, which according to this website is a common place that is impacted by stress. So while I'm consciously not registering the anxiety of surgery, my subconscious self is apparently storing it all in my trapezius muscles. I know this because I woke up this morning in A LOT OF PAIN--I could barely move my neck and have spent all day massaging it (and having Matthew massage my upper neck and shoulders) and rubbing tiger balm on the base of my neck, took pain killers, and have had a heating pad on my neck. It feels better--but I fear what my subconscious will do in the middle of the night.
*I will not miss wearing bras. Perhaps the only good thing I can say about facing a breast-less future, but it is true, I was never a fan of wearing bras, always preferred wearing camisole tops sans bras, and never owned a lot of bras.
*I am sad. Or perhaps melancholy is a better way to put it. I will miss my breasts--it's weird to think that part of my body is going to be taken away from me.
*I am ready for this to be over. By "this" it's a bit hard to know exactly what I mean, because the truth is, I don't know if I'll ever feel like I'm "cured" or that I can ever shake wondering whether this cancer will metastisize or whether another type of cancer will pop up in my body (there is an alarming number of cancers in my extended family). I don't know that I'll ever feel like a survivor, but I hope to always be someone who is in a state of N.E.D. (no evidence of disease).
*I'm not angry anymore--or at least, I'm not so angry anymore. I'd say I was pretty pissed off for a good two months, and my anger ranged from the kind of seething, rage filled, "if-looks-could-kill-you'd-be-dead" kind of anger to the low-level simmer resentment. I still get frustrated from time to time--especially at breast cancer narratives that I encounter in popular magazines that have testimonials from women who claim that their breast cancer diagnosis changed their lives for the better (OH PLEASE!) or that they are "glad" that they got breast cancer (YOU HAVE GOT TO BE KIDDING ME! WHAT THE FUCK???!!!). But overall, the anger seems to have dissipated. I think it's hard to be angry at cancer all the time.
Anyway, that's it for now. When I'll next be blogging it will be as a post-surgical, post-mastectomy, recovering/healing breastless woman. Which is saying something, I mean, what does it mean to be a breastless, hairless forty year-old woman without ovarian function in contemporary U.S. society?
These are part of the questions I mused on during my talk in Greenlaw sponsored by the Carolina Women's Center--which got written up by the Assistant Director, Ashley Fogle, in an extremely flattering blog post. And although I did not couch it in these terms, these kinds of questions were floating in the back of my head during the talk I gave at the Carolina Inn as part of the alpha Delta Kappa Phi charity ball. They raised over $300 for breast cancer charity and a fine time was had by all (see picture below--a whole slew of friends came out, and we had a great time together):
The last thing I'll say is that I'm in good hands. My Mom, Matthew, and Matthew's family in Raleigh have been taking good care of me, and so many friends have stopped by, signed up to drop off food, left voice mail and email messages. I feel really and truly loved and taken care of, and that is HUGE and will sustain me through tomorrow and the days (and weeks and months) to come.
[Aside: Although Matthew will fill in as a guest blogger for me tomorrow or Tuesday to give a post-surgical update].
So do I have any profound thoughts to share before surgery?
Nope.
But, I do have some observations.
*I am doing OK; however, I think that my body is sublimating the stress and putting it all in my trapezius muscles, which according to this website is a common place that is impacted by stress. So while I'm consciously not registering the anxiety of surgery, my subconscious self is apparently storing it all in my trapezius muscles. I know this because I woke up this morning in A LOT OF PAIN--I could barely move my neck and have spent all day massaging it (and having Matthew massage my upper neck and shoulders) and rubbing tiger balm on the base of my neck, took pain killers, and have had a heating pad on my neck. It feels better--but I fear what my subconscious will do in the middle of the night.
*I will not miss wearing bras. Perhaps the only good thing I can say about facing a breast-less future, but it is true, I was never a fan of wearing bras, always preferred wearing camisole tops sans bras, and never owned a lot of bras.
*I am sad. Or perhaps melancholy is a better way to put it. I will miss my breasts--it's weird to think that part of my body is going to be taken away from me.
*I am ready for this to be over. By "this" it's a bit hard to know exactly what I mean, because the truth is, I don't know if I'll ever feel like I'm "cured" or that I can ever shake wondering whether this cancer will metastisize or whether another type of cancer will pop up in my body (there is an alarming number of cancers in my extended family). I don't know that I'll ever feel like a survivor, but I hope to always be someone who is in a state of N.E.D. (no evidence of disease).
*I'm not angry anymore--or at least, I'm not so angry anymore. I'd say I was pretty pissed off for a good two months, and my anger ranged from the kind of seething, rage filled, "if-looks-could-kill-you'd-be-dead" kind of anger to the low-level simmer resentment. I still get frustrated from time to time--especially at breast cancer narratives that I encounter in popular magazines that have testimonials from women who claim that their breast cancer diagnosis changed their lives for the better (OH PLEASE!) or that they are "glad" that they got breast cancer (YOU HAVE GOT TO BE KIDDING ME! WHAT THE FUCK???!!!). But overall, the anger seems to have dissipated. I think it's hard to be angry at cancer all the time.
Anyway, that's it for now. When I'll next be blogging it will be as a post-surgical, post-mastectomy, recovering/healing breastless woman. Which is saying something, I mean, what does it mean to be a breastless, hairless forty year-old woman without ovarian function in contemporary U.S. society?
These are part of the questions I mused on during my talk in Greenlaw sponsored by the Carolina Women's Center--which got written up by the Assistant Director, Ashley Fogle, in an extremely flattering blog post. And although I did not couch it in these terms, these kinds of questions were floating in the back of my head during the talk I gave at the Carolina Inn as part of the alpha Delta Kappa Phi charity ball. They raised over $300 for breast cancer charity and a fine time was had by all (see picture below--a whole slew of friends came out, and we had a great time together):
The last thing I'll say is that I'm in good hands. My Mom, Matthew, and Matthew's family in Raleigh have been taking good care of me, and so many friends have stopped by, signed up to drop off food, left voice mail and email messages. I feel really and truly loved and taken care of, and that is HUGE and will sustain me through tomorrow and the days (and weeks and months) to come.
Wednesday, October 13, 2010
Smells like Pink Spirit
So it's October which means it's ...
*Hispanic Heritage Month [this should be "Latino" but it's the U.S. govt. coming up with the term and they say "Hispanic," oh well]
*Domestic Violence/Sexual Violence Awareness Month
*Oktoberfest
and of course
*Breast Cancer Awareness Month
Now here's the thing: I think by now we are all aware of breast cancer. What I mean by this is that we don't need a little pink ribbon to tell us to remember that breast cancer is an awful disease and that we should be devoting resources to breast cancer research--to find better therapies/treatments, as well as tests and other measurements to make this disease eradicated or at least to the point of remission where a diagnosis is not considered a death sentence.
And actually, a breast cancer diagnosis is really not a death sentence any longer precisely because breast cancer activists, mostly women in the 1970s who had, themselves, been diagnosed with the disease and who wanted better treatment options and a more public awareness of the disease really fought for themselves and for other women (this is back in the day when you whispered words like "breast" and "cancer" and the combination of the two would probably be registered less as a whisper and more as a mouthed soundless utterance). Among the gains that activists (including male allies) won was the end to radical mastectomies, having women have the ability to choose their treatment options instead of doctors (primarily male doctors) make those decisions for them, and doing diagnostic lumpectomies rather than automatic mastectomies. The pink ribbon attached to breast cancer education, "awareness" if you will, developed hand in hand with corporate America when Estee Lauder distributed 1.5 million ribbons along with a card explaining how to do a breast self-examination in 1992.
So what's my beef with the pink ribbon?
This is actually a question I got during the talk I gave yesterday as part of the Carolina Women Center's speaker series. Well, it was phrased differently. A student asked what I meant by "pink ribbon culture" and why I had a problem with it.
[Aside: When I woke up yesterday I realized that I was feeling a bit apprehensive about giving a talk on breast cancer. Luckily I was able to process my feelings of discomfort with my good pal J.C., who helped me to see that part of my unease has to do with the lack of critical distance I have on this subject--I mean, I am a woman who is currently undergoing treatment for breast cancer, who is about to have a bi-lateral mastectomy, and so talking about all of this IN THE MOMENT when I'm in a stage of vulnerability is naturally going to seem overwhelming. However, I have to say that I'm glad that I did the talk. I was surprised that so many students came--there were about 40 people, and over 3/4 were students--with a mix of friends/colleagues in the room as well. All in all I found it cathartic to talk about my experiences and especially why I reject the pink ribbon culture]
My problem with the pink ribbon--and why this blog is called "No Fucking Pink Ribbon" is that, to me, the pink ribbon masks and hides a lot of things, AND it seems a particularly infantalizing color and symbol, especially in terms of the overly feminine/feminized merchandising that is associated with it. I mean, the month of October has so many things "pinkified" (like NFL jerseys) or things that have a pink ribbon slapped on it. Every major magazine, especially women's magazines like "O" and "In Style" have advertisements this month touting every kind of woman's product that you can imagine, decked out with a pink ribbon and an assurance that a certain percentage of the sale of this item (cosmetics, jewelry, shoes, clothing, purses, kitchen appliances, you name it) will be donated for breast cancer research.
[Aside #2: Here are two articles that also talk about being tired of pink ribbon culture--one from a year ago in The Boston Globe and another, more recently, from The New York Times]
Now don't get me wrong--I appreciate breast cancer research. But what I think we need to do is to stop thinking in terms of research (as in finding a "cure") and start thinking in terms of prevention (if you don't get breast cancer in the first place then you won't need a cure). And prevention requires activism. Specifically, political action. I think we are about as aware of breast cancer as we are going to be. Everyone knows someone who has breast cancer. But what we need to do is to be active against breast cancer. Heck, we need to be active against all cancer.
And that's the other thing. Breast cancer seems like it's the ONLY cancer around during the month of October--or even year round. That little pink ribbon seems to trump all other cancers. When I had my appointment in oncology before I was even diagnosed I saw evidence of pink ribbons on the oncology floor--and it's ONCOLOGY it's not "breast ONCOLOGY"--so what about women who have cervical, uterine, or ovarian cancer? Are these cancers any less "female" than breast cancer? And especially with ovarian cancer--something that is very hard to detect given how interior one's ovaries are--this is a cancer that is often caught very late and that further research money and resources should absolutely be devoted towards--why should breast cancer be such a priority for women? Truthfully, heart disease is the leading cause of death in terms of illness for women--but it doesn't receive nearly the funding. And other types of cancers often don't get as much funding and public support because breast cancer and that little pink ribbon seem to envelop and encompass so much of the public imagination in terms of cancer.
But what really chafes me is the corporatization of pink ribbon culture--the idea that corporations are marketing themselves and masquerading as philanthropic organizations when it's mainly a marketing ploy. I don't meant to suggest that it's sinister or that individual people in these corporations don't care about breast cancer research or may in fact be people with breast cancer. But the bottom line for these companies is, in fact, the bottom line--it's making money. Avon and Estee Lauder and Yoplait and Dress Barn and every other company, large or small, that sells something with a pink ribbon on it is making money not losing money. They either charge more money to cover the cost of turning a product temporarily pink or branding it with a pink ribbon or they take the tax write-off from the donation and the money comes from their marketing department usually--so the profit margin remains untouched in terms of the item being sold.
[Aside #3: A book by Gayle Sulik (Oxford UP) that will be coming out at the end of October really touches on the problems with pink ribbon corporate culture--click here for the Amazon link]
And to return to the activism piece, the problem with certain corporations is that while they may be donating money for a breast cancer "cure"--their product or their practices may, in fact, be contributing to carcinogens in the environment that actually CAUSE CANCER. The best case in point is the whole reason for having breast cancer awareness month in the first place--Astra Zeneca. In 1985 Astra Zeneca began to work with groups like the American Cancer Society to promote mammography and breast self exams during October as part of a National Breast Cancer Awareness Month. But the emphasis is always on detection and TREATMENT--something that Astra Zeneca would naturally promote since they make tomoxifen, a hormone treatment that women who have breast cancer are often on for 5 years (I'll be starting my own regimen in November post-surgery). Astra Zeneca's parent company is Imperial Chemical--they make herbicides that have known carcinogenic properties--that have been linked, in fact, to cancer.
So what we really need in October is to not just rush to buy every pink beribboned item that we can find because this will help to find a cure for breast cancer. Instead, we need to question how these funds are being used (what percentage will actually go to breast cancer research for example?) and most especially we need to stop being aware of breast cancer and start to become activists against the environmental pollutants that cause all types of cancer.
*Hispanic Heritage Month [this should be "Latino" but it's the U.S. govt. coming up with the term and they say "Hispanic," oh well]
*Domestic Violence/Sexual Violence Awareness Month
*Oktoberfest
and of course
*Breast Cancer Awareness Month
Now here's the thing: I think by now we are all aware of breast cancer. What I mean by this is that we don't need a little pink ribbon to tell us to remember that breast cancer is an awful disease and that we should be devoting resources to breast cancer research--to find better therapies/treatments, as well as tests and other measurements to make this disease eradicated or at least to the point of remission where a diagnosis is not considered a death sentence.
And actually, a breast cancer diagnosis is really not a death sentence any longer precisely because breast cancer activists, mostly women in the 1970s who had, themselves, been diagnosed with the disease and who wanted better treatment options and a more public awareness of the disease really fought for themselves and for other women (this is back in the day when you whispered words like "breast" and "cancer" and the combination of the two would probably be registered less as a whisper and more as a mouthed soundless utterance). Among the gains that activists (including male allies) won was the end to radical mastectomies, having women have the ability to choose their treatment options instead of doctors (primarily male doctors) make those decisions for them, and doing diagnostic lumpectomies rather than automatic mastectomies. The pink ribbon attached to breast cancer education, "awareness" if you will, developed hand in hand with corporate America when Estee Lauder distributed 1.5 million ribbons along with a card explaining how to do a breast self-examination in 1992.
So what's my beef with the pink ribbon?
This is actually a question I got during the talk I gave yesterday as part of the Carolina Women Center's speaker series. Well, it was phrased differently. A student asked what I meant by "pink ribbon culture" and why I had a problem with it.
[Aside: When I woke up yesterday I realized that I was feeling a bit apprehensive about giving a talk on breast cancer. Luckily I was able to process my feelings of discomfort with my good pal J.C., who helped me to see that part of my unease has to do with the lack of critical distance I have on this subject--I mean, I am a woman who is currently undergoing treatment for breast cancer, who is about to have a bi-lateral mastectomy, and so talking about all of this IN THE MOMENT when I'm in a stage of vulnerability is naturally going to seem overwhelming. However, I have to say that I'm glad that I did the talk. I was surprised that so many students came--there were about 40 people, and over 3/4 were students--with a mix of friends/colleagues in the room as well. All in all I found it cathartic to talk about my experiences and especially why I reject the pink ribbon culture]
My problem with the pink ribbon--and why this blog is called "No Fucking Pink Ribbon" is that, to me, the pink ribbon masks and hides a lot of things, AND it seems a particularly infantalizing color and symbol, especially in terms of the overly feminine/feminized merchandising that is associated with it. I mean, the month of October has so many things "pinkified" (like NFL jerseys) or things that have a pink ribbon slapped on it. Every major magazine, especially women's magazines like "O" and "In Style" have advertisements this month touting every kind of woman's product that you can imagine, decked out with a pink ribbon and an assurance that a certain percentage of the sale of this item (cosmetics, jewelry, shoes, clothing, purses, kitchen appliances, you name it) will be donated for breast cancer research.
[Aside #2: Here are two articles that also talk about being tired of pink ribbon culture--one from a year ago in The Boston Globe and another, more recently, from The New York Times]
Now don't get me wrong--I appreciate breast cancer research. But what I think we need to do is to stop thinking in terms of research (as in finding a "cure") and start thinking in terms of prevention (if you don't get breast cancer in the first place then you won't need a cure). And prevention requires activism. Specifically, political action. I think we are about as aware of breast cancer as we are going to be. Everyone knows someone who has breast cancer. But what we need to do is to be active against breast cancer. Heck, we need to be active against all cancer.
And that's the other thing. Breast cancer seems like it's the ONLY cancer around during the month of October--or even year round. That little pink ribbon seems to trump all other cancers. When I had my appointment in oncology before I was even diagnosed I saw evidence of pink ribbons on the oncology floor--and it's ONCOLOGY it's not "breast ONCOLOGY"--so what about women who have cervical, uterine, or ovarian cancer? Are these cancers any less "female" than breast cancer? And especially with ovarian cancer--something that is very hard to detect given how interior one's ovaries are--this is a cancer that is often caught very late and that further research money and resources should absolutely be devoted towards--why should breast cancer be such a priority for women? Truthfully, heart disease is the leading cause of death in terms of illness for women--but it doesn't receive nearly the funding. And other types of cancers often don't get as much funding and public support because breast cancer and that little pink ribbon seem to envelop and encompass so much of the public imagination in terms of cancer.
But what really chafes me is the corporatization of pink ribbon culture--the idea that corporations are marketing themselves and masquerading as philanthropic organizations when it's mainly a marketing ploy. I don't meant to suggest that it's sinister or that individual people in these corporations don't care about breast cancer research or may in fact be people with breast cancer. But the bottom line for these companies is, in fact, the bottom line--it's making money. Avon and Estee Lauder and Yoplait and Dress Barn and every other company, large or small, that sells something with a pink ribbon on it is making money not losing money. They either charge more money to cover the cost of turning a product temporarily pink or branding it with a pink ribbon or they take the tax write-off from the donation and the money comes from their marketing department usually--so the profit margin remains untouched in terms of the item being sold.
[Aside #3: A book by Gayle Sulik (Oxford UP) that will be coming out at the end of October really touches on the problems with pink ribbon corporate culture--click here for the Amazon link]
And to return to the activism piece, the problem with certain corporations is that while they may be donating money for a breast cancer "cure"--their product or their practices may, in fact, be contributing to carcinogens in the environment that actually CAUSE CANCER. The best case in point is the whole reason for having breast cancer awareness month in the first place--Astra Zeneca. In 1985 Astra Zeneca began to work with groups like the American Cancer Society to promote mammography and breast self exams during October as part of a National Breast Cancer Awareness Month. But the emphasis is always on detection and TREATMENT--something that Astra Zeneca would naturally promote since they make tomoxifen, a hormone treatment that women who have breast cancer are often on for 5 years (I'll be starting my own regimen in November post-surgery). Astra Zeneca's parent company is Imperial Chemical--they make herbicides that have known carcinogenic properties--that have been linked, in fact, to cancer.
So what we really need in October is to not just rush to buy every pink beribboned item that we can find because this will help to find a cure for breast cancer. Instead, we need to question how these funds are being used (what percentage will actually go to breast cancer research for example?) and most especially we need to stop being aware of breast cancer and start to become activists against the environmental pollutants that cause all types of cancer.
Sunday, October 3, 2010
Pick'em On Up! Pick'em On Up!
A week ago I was walking my daily 1-2 mile loop (if I'm tired, I do a single loop, and if I feel OK, I double it) when I realized, after being 2/3 of the way through the single loop, that I was pretty exhausted. I concentrated on just putting one foot in front of the other, plodding slowly toward home. A young man, probably UNC undergraduate from his attire (UNC T-shirt, skateboard) was passing me on the opposite side of the street. Seeing me, this young man yelled out encouragingly, loudly (for 8:30am on a Saturday) and enthusiastically,
"Pick'em On Up! Pick'em On Up!"
At first, I must admit that I didn't know he was talking to me. I think it's because in our neighborhood, it's not unusual to find people talking or even shouting aloud to themselves. But I quickly realized that this guy was hailing me, so I gave a small wave and then continued to concentrate on getting myself home so I could collapse on the couch. But this guy, seeing my acknowledgment re-doubles his cheerleading efforts by again shouting and clapping, in rhythm to his words:
"PICK'EM ON UP! PICK'EM ON UP! YOU KNOW YOU WANT TO! PICK'EM ON UP! PICK'EM ON UP!"
My one-man cheering stand apparently wanted to encourage me to run--to jog--to stop plodding slowly along and instead to feel that second wind and continue my work out. Since I was wearing a baseball cap, perhaps he didn't notice my hairless state. At any rate, when I realized that this guy wanted me to RUN when it took all of my resources to simply WALK, I felt this rush of frustration and anger at this guy. I mean, who did he think he was??? Maybe I had just finished a 20 mile run and was limping home? Maybe I just didn't feel like going any faster. Or maybe, as is the case with me, I have cancer and just finished 4 months of chemotherapy and walking for a mile is just about all the exercising my poor body can take at this moment. I wanted to take off my hat, point to my hairless head, and say to this guy
"I can't--I have cancer!"
But of course by the time I thought about all of this, the guy had already passed beyond my line of vision and out of earshot of me.
So what's the point of me recounting this anecdote?
Conflicting stories. The story that this guy had when he saw me was of a weary jogger who just needed a bit more encouragement to find my groove and to keep on running. The actual story, as I was experiencing it in my body, is that I probably pushed myself harder than I needed to by walking a full mile and was paying for it in the last 1/3 of the way home, so that just putting one foot in front of the other was enough of an effort for me.
And I guess the thing is, I only have my story to tell. My story--my experience with breast cancer and chemotherapy and my upcoming bi-lateral mastectomy surgery--is simply my story and may or may not resonate with anyone else who has been diagnosed with breast cancer and who undergoes (or who underwent) similar treatments.
I've been thinking of this since in the week before my surgery I'll be giving a talk (flyer is below) with the CWC in Donovan Lounge and saying a few words at the charity ball. And I agreed to do both these talks because if figure if I'm blogging about my breast cancer experience and being so public about it, then talking about it in front of groups of people shouldn't be so difficult. And it's not the sense of privacy I find a bit daunting but the feeling that somehow I have words of wisdom to offer or insights I've gained or even a particularly interesting story to tell about what I've gone through. It makes me wonder what people see when they see me--that like the young man who saw a weary runner, are others perceiving me in a way that is contrary to my own story? I know I don't look the way we assume someone who has gone through chemo would look--I never lost a lot of weight, I had a healthy tan going into chemo so I never really looked pale or ashen, and esp. with my wigs on and with a shirt that hides my port, you really can't tell that I'm living in a different body now than I was before my diagnosis.
But I am different. I am inhabiting a body that is simply not capable of walking more than 1-2 miles, let alone running a quarter of that length. My neuropathy gets better and then it gets worse. I'm experiencing intense hot flashes because my body has gone into temporary (perhaps permanent?) menopause. And some days I feel more energetic than others but I definitely feel periods of fatigue nearly every day. And that's just the physical stuff.
Anyway, I haven't quite decided what it is I'm going to talk about on Tuesday, October 12--the title on the flyer and description and image below were written up by the great folks at the CWC -- I love the title and the description and hope I won't disappoint anyone who comes. I know I have a story to tell--I guess I just wonder how compelling it is.
And in case anyone is wondering, I see the above design as an unraveled or deconstructed pink ribbon, so I'm A-OK with it!
"Pick'em On Up! Pick'em On Up!"
At first, I must admit that I didn't know he was talking to me. I think it's because in our neighborhood, it's not unusual to find people talking or even shouting aloud to themselves. But I quickly realized that this guy was hailing me, so I gave a small wave and then continued to concentrate on getting myself home so I could collapse on the couch. But this guy, seeing my acknowledgment re-doubles his cheerleading efforts by again shouting and clapping, in rhythm to his words:
"PICK'EM ON UP! PICK'EM ON UP! YOU KNOW YOU WANT TO! PICK'EM ON UP! PICK'EM ON UP!"
My one-man cheering stand apparently wanted to encourage me to run--to jog--to stop plodding slowly along and instead to feel that second wind and continue my work out. Since I was wearing a baseball cap, perhaps he didn't notice my hairless state. At any rate, when I realized that this guy wanted me to RUN when it took all of my resources to simply WALK, I felt this rush of frustration and anger at this guy. I mean, who did he think he was??? Maybe I had just finished a 20 mile run and was limping home? Maybe I just didn't feel like going any faster. Or maybe, as is the case with me, I have cancer and just finished 4 months of chemotherapy and walking for a mile is just about all the exercising my poor body can take at this moment. I wanted to take off my hat, point to my hairless head, and say to this guy
"I can't--I have cancer!"
But of course by the time I thought about all of this, the guy had already passed beyond my line of vision and out of earshot of me.
So what's the point of me recounting this anecdote?
Conflicting stories. The story that this guy had when he saw me was of a weary jogger who just needed a bit more encouragement to find my groove and to keep on running. The actual story, as I was experiencing it in my body, is that I probably pushed myself harder than I needed to by walking a full mile and was paying for it in the last 1/3 of the way home, so that just putting one foot in front of the other was enough of an effort for me.
And I guess the thing is, I only have my story to tell. My story--my experience with breast cancer and chemotherapy and my upcoming bi-lateral mastectomy surgery--is simply my story and may or may not resonate with anyone else who has been diagnosed with breast cancer and who undergoes (or who underwent) similar treatments.
I've been thinking of this since in the week before my surgery I'll be giving a talk (flyer is below) with the CWC in Donovan Lounge and saying a few words at the charity ball. And I agreed to do both these talks because if figure if I'm blogging about my breast cancer experience and being so public about it, then talking about it in front of groups of people shouldn't be so difficult. And it's not the sense of privacy I find a bit daunting but the feeling that somehow I have words of wisdom to offer or insights I've gained or even a particularly interesting story to tell about what I've gone through. It makes me wonder what people see when they see me--that like the young man who saw a weary runner, are others perceiving me in a way that is contrary to my own story? I know I don't look the way we assume someone who has gone through chemo would look--I never lost a lot of weight, I had a healthy tan going into chemo so I never really looked pale or ashen, and esp. with my wigs on and with a shirt that hides my port, you really can't tell that I'm living in a different body now than I was before my diagnosis.
But I am different. I am inhabiting a body that is simply not capable of walking more than 1-2 miles, let alone running a quarter of that length. My neuropathy gets better and then it gets worse. I'm experiencing intense hot flashes because my body has gone into temporary (perhaps permanent?) menopause. And some days I feel more energetic than others but I definitely feel periods of fatigue nearly every day. And that's just the physical stuff.
Anyway, I haven't quite decided what it is I'm going to talk about on Tuesday, October 12--the title on the flyer and description and image below were written up by the great folks at the CWC -- I love the title and the description and hope I won't disappoint anyone who comes. I know I have a story to tell--I guess I just wonder how compelling it is.
And in case anyone is wondering, I see the above design as an unraveled or deconstructed pink ribbon, so I'm A-OK with it!
Monday, September 27, 2010
I've got a date...a surgery date
I'm writing from Topsail Beach--I think there's sort've a nice symmatery that I went to the coast right before chemo and I'm at a different coast right after chemo. My Aunt Joyce and Uncle Nap came into NC to visit with us and have decided to sweep us up and take us to the coast for some R&R.
Which is nice because it's now T-minus 21 days and counting for my surgery. Yes, I have a date for my surgery: Monday, October 18. I'll be getting details about it after I meet with my surgeon this upcoming Wednesday.
My mother will be flying in on Sat, Oct 16 and will stay and help with my healing/recovery through Nov. 3. And because so many of our generous friends have asked me if I'll do another sign-up sheet for meals during the surgery recuperation, we have graciously and gratefully complied--here it is:
Surgery Sign-Up for Food Drop Offs
[We have felt sheepish about asking for food help and gifts a second time, but so many folks assure me that they like the sign-up sheet and want to help out. And since we are blessed with so many friends who are wonderful cooks, we are very appreciative of everyone's efforts on our behalf]
[UPDATE: TUESDAY, SEPTEMBER 28, 6:30PM: We have so many generous friends/family! The sign-up sheet has been filled in record time--THANK YOU!]
So on the health front, I'm doing fine--still dealing with some fatigue/exhaustion, and my fingertips are still numb, but I'm looking forward to those symptoms subsiding and for my hair to finally start growing back!
Finally, in other breast-cancer related news, two events for folks who are local:
*Tuesday, October 12 @4pm at the Carolina Women's Center at UNC Chapel Hill
--I'll be part of a breast cancer awareness panel that is being sponsored by the CWC as part of their breast cancer awareness education month activities.
*Friday, October 15 @7pm. The Asian American sorority, alpha Kappa Delta Phi will be holding their annual charity ball at the Carolina Inn -- all proceeds will go to the Avon Foundation breast cancer awareness/research (for more info, see the flyer below)
Which is nice because it's now T-minus 21 days and counting for my surgery. Yes, I have a date for my surgery: Monday, October 18. I'll be getting details about it after I meet with my surgeon this upcoming Wednesday.
My mother will be flying in on Sat, Oct 16 and will stay and help with my healing/recovery through Nov. 3. And because so many of our generous friends have asked me if I'll do another sign-up sheet for meals during the surgery recuperation, we have graciously and gratefully complied--here it is:
Surgery Sign-Up for Food Drop Offs
[We have felt sheepish about asking for food help and gifts a second time, but so many folks assure me that they like the sign-up sheet and want to help out. And since we are blessed with so many friends who are wonderful cooks, we are very appreciative of everyone's efforts on our behalf]
[UPDATE: TUESDAY, SEPTEMBER 28, 6:30PM: We have so many generous friends/family! The sign-up sheet has been filled in record time--THANK YOU!]
So on the health front, I'm doing fine--still dealing with some fatigue/exhaustion, and my fingertips are still numb, but I'm looking forward to those symptoms subsiding and for my hair to finally start growing back!
Finally, in other breast-cancer related news, two events for folks who are local:
*Tuesday, October 12 @4pm at the Carolina Women's Center at UNC Chapel Hill
--I'll be part of a breast cancer awareness panel that is being sponsored by the CWC as part of their breast cancer awareness education month activities.
*Friday, October 15 @7pm. The Asian American sorority, alpha Kappa Delta Phi will be holding their annual charity ball at the Carolina Inn -- all proceeds will go to the Avon Foundation breast cancer awareness/research (for more info, see the flyer below)
Friday, September 17, 2010
Yesterday was my 8th and FINAL round of chemo
[apologies to my vegan/vegetarian friends but]
Stick a fork in me--I'M DONE!
Yesterday marked my 8th and final round of chemotherapy. From June 10 to September 16 I've had 4 rounds of AC chemo--the stuff that made me feel truly bad and weird and nauseous and that caused me to lose my hair 3 weeks into treatment. And then 4 rounds of Taxol, which was much better on my system, but it still gave me muscle and joint pain, and the chemo brain, while better on Taxol, is still ever present, as is the fatigue, which is a combination of the cumulative effects of all this poison in my body and my lowered red blood cells.
But now that's all over! Soon my hair will be growing back (I'm hopeful in another 2-3 weeks I'll be feeling some peach fuzz covering my scalp). And as my red blood cells start to produce more and more and as the chemo leaves my body, hopefully I'll feel more energetic. My nurse Delma did warn me that it could take a couple of months--which will probably be the case especially, with me, since I'm meeting in 2 weeks with my surgeon to go over my bi-lateral (double) mastectomy procedure. I think he's going to be in touch with me by email to set a firm date, but I think we're looking at mid-October. If I had to guess, it'll be either the 14-15 or 21-22.
As soon as I know, I'll let all of YOU know. Matthew and I have been really overwhelmed with everyone's generosity--and folks have been asking if they can do MORE, esp. around the time of the surgery. Honestly, I had not originally planned to do any more meal drop off sign-ups or Bruno walking because I didn't want to overstep the bounds of hospitality, and I esp. didn't want to seem like we were taking advantage of everyone's good will. But Francesca and Kathy and Minrose and Ruth and Joy and Jane D., and Beverly have all ASSURED ME that it would be nice to have another sign-up sheet. So...we'll be putting one up just as soon as I know what the surgery schedule is going to be.
And now that the chemo is done, I do want to have at least a week where I'm not projecting ahead to the next thing. First of all, I know that I'm going to show symptoms starting Sat. evening--which means joint/muscle pain, which got pretty severe last time, so I may be drugged up on percocette Sat-Mon. But from an emotional p.o.v., I know that the next step--the surgery--is going to be challenging for me in many, many ways. I've been reading a lot of cancer memoirs and it's not a pretty picture, but it does give me a sense of the kind of pain (and hopefully pain management) that I'll be experiencing and the emotional/psychological pain that will come as well. And I know that I'll need at minimum 2 weeks of intense housebound/bedbound healing, and probably another 4-6 weeks of physical therapy and just being gentle with myself.
But getting back to yesterday, honestly I was so happy I was nearly giddy--the first time I can ever say that about going in for a chemo treatment! Matthew and I wanted to do something nice for all the staff, nurses, and docs and so we bought some gifts from Southern Season and delivered them to the first floor registration (where I always began every visit verifying that I hadn't moved since the last time I was there, and I also had to verify my name and date of birth--wouldn't it be funny/odd/bizarre if someone ELSE was trying to get chemo in place of a friend/family member?)
Anyway, I'm not a very huggy person [Pause: BUT WAIT, I've hugged Jennifer lots of times!]. Yes, it's true. I'm not a very huggy person. I don't know if it's just me, or if I should do the typical Asian American thing and tell you that we didn't hug a lot in my family (the standard trope found in much coming-of-age/young adult literature describing the dynamics of immigrant parents and their American born children). Seriously, though, I learned to hug when I got to high school and college [and NO as crunchy-granola as UCSB was, they did NOT teach a class on Hugging 101, although if they did, I can assure you that I would have received at least 1 credit towards graduation for it--another notorious thing about UCSB's curriculum, you could get college credit for the darndest things). And while I am fine with it--really--I wouldn't say that I'm normally the first one to go in for a hug. But in this case, being hugged by all the receptionists, nurses and doctors because it was my last day of chemo gave me a warm fuzzy. And I tried not to think about the number of germs there are in a hospital or that I had been telling friends that I wasn't hugging anymore because I was worried about my compromised immune system. Which, by the way, I'm still a bit nervous about going into surgery because I really don't want anything to delay surgery, like getting an infection or the flu. So I may still not be hugging folks, f.y.i.
It was a rather long day--we go there at 10:30am and didn't leave until 6:30pm. But just as I was finishing up my chemo treatment, the nurses came in and surprised me with a going away song, mardi gras beads, and a certificate! I took a photo of the few that would let me take a photo with them, including my nurse Julie, who very appropriately was the first nurse I ever had on the chemo ward, and I was tickled pink to have her as my last nurse on the chemo ward--chair #14 (and btw, Julie promised me not to show her photo to anyone--I would love to post the one with all the nurses and the pharmacist, Chris, but that will just have to be part of my private photo stash).
So to wrap things up I'm just going to leave you with a series of photos we took at the hospital yesterday to commemorate my last chemo treatment:
These were the gifts we gave to the registration desk, 2nd floor oncology & 3rd floor chemotherapy (actually, the big tower has a duplicate to the left that you can't see)
Most of what we did on the Oncology floor was wait to see nurses and doctors, so here is Matthew on the phone while we're waiting for the nurse to draw blood for my labwork. Maybe he's also practicing for when he becomes a nurse one day!
A self-portrait in the mirror--yes, I'm also trying to wait patiently for my blood to be drawn.
This is the pump that they used to administer my chemo drugs--bye bye pump!
Matthew goofing around with me in the chemo ward, trying to make me laugh
Me getting my chemo award! As the nurses all said, they hope I'll come to visit but the hope to NEVER see me in the chemo chair again. Couldn't agree more!
Finally, Matthew decided he wanted to see what it was like to be a strawberry blond--what do you think???!!!!
Stick a fork in me--I'M DONE!
Yesterday marked my 8th and final round of chemotherapy. From June 10 to September 16 I've had 4 rounds of AC chemo--the stuff that made me feel truly bad and weird and nauseous and that caused me to lose my hair 3 weeks into treatment. And then 4 rounds of Taxol, which was much better on my system, but it still gave me muscle and joint pain, and the chemo brain, while better on Taxol, is still ever present, as is the fatigue, which is a combination of the cumulative effects of all this poison in my body and my lowered red blood cells.
But now that's all over! Soon my hair will be growing back (I'm hopeful in another 2-3 weeks I'll be feeling some peach fuzz covering my scalp). And as my red blood cells start to produce more and more and as the chemo leaves my body, hopefully I'll feel more energetic. My nurse Delma did warn me that it could take a couple of months--which will probably be the case especially, with me, since I'm meeting in 2 weeks with my surgeon to go over my bi-lateral (double) mastectomy procedure. I think he's going to be in touch with me by email to set a firm date, but I think we're looking at mid-October. If I had to guess, it'll be either the 14-15 or 21-22.
As soon as I know, I'll let all of YOU know. Matthew and I have been really overwhelmed with everyone's generosity--and folks have been asking if they can do MORE, esp. around the time of the surgery. Honestly, I had not originally planned to do any more meal drop off sign-ups or Bruno walking because I didn't want to overstep the bounds of hospitality, and I esp. didn't want to seem like we were taking advantage of everyone's good will. But Francesca and Kathy and Minrose and Ruth and Joy and Jane D., and Beverly have all ASSURED ME that it would be nice to have another sign-up sheet. So...we'll be putting one up just as soon as I know what the surgery schedule is going to be.
And now that the chemo is done, I do want to have at least a week where I'm not projecting ahead to the next thing. First of all, I know that I'm going to show symptoms starting Sat. evening--which means joint/muscle pain, which got pretty severe last time, so I may be drugged up on percocette Sat-Mon. But from an emotional p.o.v., I know that the next step--the surgery--is going to be challenging for me in many, many ways. I've been reading a lot of cancer memoirs and it's not a pretty picture, but it does give me a sense of the kind of pain (and hopefully pain management) that I'll be experiencing and the emotional/psychological pain that will come as well. And I know that I'll need at minimum 2 weeks of intense housebound/bedbound healing, and probably another 4-6 weeks of physical therapy and just being gentle with myself.
But getting back to yesterday, honestly I was so happy I was nearly giddy--the first time I can ever say that about going in for a chemo treatment! Matthew and I wanted to do something nice for all the staff, nurses, and docs and so we bought some gifts from Southern Season and delivered them to the first floor registration (where I always began every visit verifying that I hadn't moved since the last time I was there, and I also had to verify my name and date of birth--wouldn't it be funny/odd/bizarre if someone ELSE was trying to get chemo in place of a friend/family member?)
Anyway, I'm not a very huggy person [Pause: BUT WAIT, I've hugged Jennifer lots of times!]. Yes, it's true. I'm not a very huggy person. I don't know if it's just me, or if I should do the typical Asian American thing and tell you that we didn't hug a lot in my family (the standard trope found in much coming-of-age/young adult literature describing the dynamics of immigrant parents and their American born children). Seriously, though, I learned to hug when I got to high school and college [and NO as crunchy-granola as UCSB was, they did NOT teach a class on Hugging 101, although if they did, I can assure you that I would have received at least 1 credit towards graduation for it--another notorious thing about UCSB's curriculum, you could get college credit for the darndest things). And while I am fine with it--really--I wouldn't say that I'm normally the first one to go in for a hug. But in this case, being hugged by all the receptionists, nurses and doctors because it was my last day of chemo gave me a warm fuzzy. And I tried not to think about the number of germs there are in a hospital or that I had been telling friends that I wasn't hugging anymore because I was worried about my compromised immune system. Which, by the way, I'm still a bit nervous about going into surgery because I really don't want anything to delay surgery, like getting an infection or the flu. So I may still not be hugging folks, f.y.i.
It was a rather long day--we go there at 10:30am and didn't leave until 6:30pm. But just as I was finishing up my chemo treatment, the nurses came in and surprised me with a going away song, mardi gras beads, and a certificate! I took a photo of the few that would let me take a photo with them, including my nurse Julie, who very appropriately was the first nurse I ever had on the chemo ward, and I was tickled pink to have her as my last nurse on the chemo ward--chair #14 (and btw, Julie promised me not to show her photo to anyone--I would love to post the one with all the nurses and the pharmacist, Chris, but that will just have to be part of my private photo stash).
So to wrap things up I'm just going to leave you with a series of photos we took at the hospital yesterday to commemorate my last chemo treatment:
These were the gifts we gave to the registration desk, 2nd floor oncology & 3rd floor chemotherapy (actually, the big tower has a duplicate to the left that you can't see)
Most of what we did on the Oncology floor was wait to see nurses and doctors, so here is Matthew on the phone while we're waiting for the nurse to draw blood for my labwork. Maybe he's also practicing for when he becomes a nurse one day!
A self-portrait in the mirror--yes, I'm also trying to wait patiently for my blood to be drawn.
This is the pump that they used to administer my chemo drugs--bye bye pump!
Matthew goofing around with me in the chemo ward, trying to make me laugh
Me getting my chemo award! As the nurses all said, they hope I'll come to visit but the hope to NEVER see me in the chemo chair again. Couldn't agree more!
Finally, Matthew decided he wanted to see what it was like to be a strawberry blond--what do you think???!!!!
Wednesday, September 8, 2010
More musings on my mortality
[Health Update: My symptoms are pretty constant/consistent since the first round of Taxol, with perhaps more fatigue and increased pain (I was on a steady diet of percocette until today) as well as increased neuropathy/numbness in my fingertips/first digit of my fingers and now my toes. All in all I'm OK, just looking forward to the last round of chemo and for this part of my treatment to be OVER!]
I know I've already pondered the meaning of my life and what I want my life to be about in a previous post, but I must confess (and again, let me reiterate that I am not depressed or overly anxious, at least not more anxious than I think anyone else going through chemo and about to have mastectomy surgery is) that I still think about these existential questions. But I also have been thinking about my death--or about death in general--and about how we memorialize those who die--and about what I want in particular for my own death.
I guess this is what I mean. I can't quite envision (and lets be honest, I don't really want to envision) my death. I hope it will be when I'm much older than I am now--it'd be nice for me to live until 80--twice my current lifespan--and honestly barring a recurrence of cancer or some tragic accident or other fatal illness, this should be possible since 3 of my 4 grandparents lived past 80--and my maternal grandmother is still doing very well at 97 (yes, quite incredible and noteworthy for a woman who has never had to be in a hospital aside from the births of her 9 children).
Yet regardless of how and when I die (and I hope it is painless--that's what we all want right?) I have already made certain decisions about my death--that I want to be cremated. And I want a memorial service where people don't just wear black (autumnal colors would be nice--they are cheerful and I always liked reds, golds, and oranges--anyone who has been in my house can readily see this). But the piece that eludes me is: how will I be remembered?
Because, in general, I think most folks hope that when they die, that they will have lived a full life and full life span (again, I'd vote for over 80), that their deaths will be free of pain and suffering, and that they will be missed and remembered with fondness.
It's that last part that I wonder about. I don't mean that I don't expect to be missed or remembered. But you have to wonder: for how long? Certainly for those who know us (or knew us) and who love(d) us, we would be missed and remembered for the lifespan of those folk. But beyond that? Is this why people chase after fame--so that they will be remembered? So that they will feel like their life has meant something? So that they will feel like they accomplished something significant if their name is on a building or if they invented something useful (or even not useful) or if they published a number of books, starred in several films, earned awards and accolades.
And maybe, on a more basic level, is this why we wish to be buried in graveyards with granite grave markers--to have a permanent record of our existence. That the basic facts of our lives--our names, our birthdates, the date of our passing, will be recorded in stone as a type of remembrance that we once were here. I think about this on my morning walk since one particular 1.5 mile route takes me past the Carrboro cemetery. I always slow down when I near the cemetery so that I can read the names on the markers. I have never seen anyone visit one of the graves, and I wonder whether many of them still have family in the area or whether they are the last of their family line. I wonder whether they picked out the marker that rests above them, whether they like the quote or the lack of saying, and whether they are remembered the way they want to be remembered, even if no one comes to visit any longer. Is it enough that random walkers, like myself, read their names and briefly hold them in their thoughts?
I am not someone who is free of ego, yet I know that I don't want a marker to commemorate my life. I'm also not trying to say that those of you who want a gravestone are ego-maniacs. I just mean that for myself, I think I'm OK without any plaque or urn or permanent commemoration. I suppose it will be up to whomever survives me to decide on the ashes -- where they get scattered (I'd like at least part of me to go back to California, f.y.i.) -- but the truth is, I'll be dead so really, I won't know the difference. And I suppose if it comforts someone to put up a marker or to have an urn with my ashes, then I'd respect that, even if it isn't what I want for myself. After all, I'd be dead and wouldn't know the difference (unless any of you are still around and want to chide my survivors about not honoring my last wishes).
How I am remembered though...I suppose that's related to my previous post in terms of how I want to live my life and what makes a "good" life--because I do want to live a good life and I hope (as many of us do) that when I die, I will have people who will be sad and who will mourn my passing--and that there will be people who will remember the good things that I did--the difference that my existence has made on this planet. But beyond the people who immediately know/knew me, I think I'm OK with being part of the obscure masses of the deceased who passed through this life whom no one can recall. It just seems too much to expect that I'm going to do something so memorable and earthshattering that my name (and deeds) will live on in valor/infamy (lets hope the former--it'd be awful to be remembered for all time because I did something horrific--YIKES).
And yet...there is this video from The New York Times describing a ceremony in central Madagascar that happens every 5-7 years in various family groups wherein the dead ancestors are exhumed and hundreds of their descendants dance with their bodies and tell stories of their lives and basically pay homage and celebrate the lives that they lived.
I know it seems creepy to our 21st century U.S./Western notions of death to imagine exhuming corpses and dancing with dead bodies. But I also think that there is something marvelous in not treating death (and dead bodies) with fear and trepidation--in making death be something that is more accepted and prosaic as well as special and celebratory. In Chinese tradition there is a day during the Chinese new year (and/or there is a Spring festival/holiday) where you visit the graves of your ancestors and place their favorite dishes on their tombstones. And in Confucian tradition it is common to have an altar with a photo of the deceased along with burning incense, significant momentos from their lives, and, again, food offerings.
And despite what I just wrote above, about not wanting a grave stone and being OK with being forgotten, there is a part of me that would like to be remembered through stories, like the people of Madagascar, with dancing and celebration, and with food tributes left at an altar. Especially the food--given my obsession with food and eating, food tributes by far seem the best way I could be remembered.
I know I've already pondered the meaning of my life and what I want my life to be about in a previous post, but I must confess (and again, let me reiterate that I am not depressed or overly anxious, at least not more anxious than I think anyone else going through chemo and about to have mastectomy surgery is) that I still think about these existential questions. But I also have been thinking about my death--or about death in general--and about how we memorialize those who die--and about what I want in particular for my own death.
I guess this is what I mean. I can't quite envision (and lets be honest, I don't really want to envision) my death. I hope it will be when I'm much older than I am now--it'd be nice for me to live until 80--twice my current lifespan--and honestly barring a recurrence of cancer or some tragic accident or other fatal illness, this should be possible since 3 of my 4 grandparents lived past 80--and my maternal grandmother is still doing very well at 97 (yes, quite incredible and noteworthy for a woman who has never had to be in a hospital aside from the births of her 9 children).
Yet regardless of how and when I die (and I hope it is painless--that's what we all want right?) I have already made certain decisions about my death--that I want to be cremated. And I want a memorial service where people don't just wear black (autumnal colors would be nice--they are cheerful and I always liked reds, golds, and oranges--anyone who has been in my house can readily see this). But the piece that eludes me is: how will I be remembered?
Because, in general, I think most folks hope that when they die, that they will have lived a full life and full life span (again, I'd vote for over 80), that their deaths will be free of pain and suffering, and that they will be missed and remembered with fondness.
It's that last part that I wonder about. I don't mean that I don't expect to be missed or remembered. But you have to wonder: for how long? Certainly for those who know us (or knew us) and who love(d) us, we would be missed and remembered for the lifespan of those folk. But beyond that? Is this why people chase after fame--so that they will be remembered? So that they will feel like their life has meant something? So that they will feel like they accomplished something significant if their name is on a building or if they invented something useful (or even not useful) or if they published a number of books, starred in several films, earned awards and accolades.
And maybe, on a more basic level, is this why we wish to be buried in graveyards with granite grave markers--to have a permanent record of our existence. That the basic facts of our lives--our names, our birthdates, the date of our passing, will be recorded in stone as a type of remembrance that we once were here. I think about this on my morning walk since one particular 1.5 mile route takes me past the Carrboro cemetery. I always slow down when I near the cemetery so that I can read the names on the markers. I have never seen anyone visit one of the graves, and I wonder whether many of them still have family in the area or whether they are the last of their family line. I wonder whether they picked out the marker that rests above them, whether they like the quote or the lack of saying, and whether they are remembered the way they want to be remembered, even if no one comes to visit any longer. Is it enough that random walkers, like myself, read their names and briefly hold them in their thoughts?
I am not someone who is free of ego, yet I know that I don't want a marker to commemorate my life. I'm also not trying to say that those of you who want a gravestone are ego-maniacs. I just mean that for myself, I think I'm OK without any plaque or urn or permanent commemoration. I suppose it will be up to whomever survives me to decide on the ashes -- where they get scattered (I'd like at least part of me to go back to California, f.y.i.) -- but the truth is, I'll be dead so really, I won't know the difference. And I suppose if it comforts someone to put up a marker or to have an urn with my ashes, then I'd respect that, even if it isn't what I want for myself. After all, I'd be dead and wouldn't know the difference (unless any of you are still around and want to chide my survivors about not honoring my last wishes).
How I am remembered though...I suppose that's related to my previous post in terms of how I want to live my life and what makes a "good" life--because I do want to live a good life and I hope (as many of us do) that when I die, I will have people who will be sad and who will mourn my passing--and that there will be people who will remember the good things that I did--the difference that my existence has made on this planet. But beyond the people who immediately know/knew me, I think I'm OK with being part of the obscure masses of the deceased who passed through this life whom no one can recall. It just seems too much to expect that I'm going to do something so memorable and earthshattering that my name (and deeds) will live on in valor/infamy (lets hope the former--it'd be awful to be remembered for all time because I did something horrific--YIKES).
And yet...there is this video from The New York Times describing a ceremony in central Madagascar that happens every 5-7 years in various family groups wherein the dead ancestors are exhumed and hundreds of their descendants dance with their bodies and tell stories of their lives and basically pay homage and celebrate the lives that they lived.
I know it seems creepy to our 21st century U.S./Western notions of death to imagine exhuming corpses and dancing with dead bodies. But I also think that there is something marvelous in not treating death (and dead bodies) with fear and trepidation--in making death be something that is more accepted and prosaic as well as special and celebratory. In Chinese tradition there is a day during the Chinese new year (and/or there is a Spring festival/holiday) where you visit the graves of your ancestors and place their favorite dishes on their tombstones. And in Confucian tradition it is common to have an altar with a photo of the deceased along with burning incense, significant momentos from their lives, and, again, food offerings.
And despite what I just wrote above, about not wanting a grave stone and being OK with being forgotten, there is a part of me that would like to be remembered through stories, like the people of Madagascar, with dancing and celebration, and with food tributes left at an altar. Especially the food--given my obsession with food and eating, food tributes by far seem the best way I could be remembered.
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