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Saturday, December 11, 2010

Missing MY missing breasts and why I chose not to reconstruct

On Monday, December 13, it will be 8 weeks since I had my bi-lateral (double) mastectomy surgery and 4 weeks since the last drain was removed from my right side. It will also be 12 weeks since my last round of chemo and approximately 6 months since I was originally diagnosed with breast cancer in April 2010.

How am I doing?

This is the question I am most asked from friends and colleagues and acquaintances when I see them after a few days/weeks/months. It was the #1 question I got when I went to my department's holiday party last week. And my answer, genuine and consistent, is that I'm good, or to be grammatically correct, I'm well. I'm doing just fine. I'm still a bit tight in my chest--yoga and the physical therapy exercises definitely help--and I'm definitely still tired/fatigued as a result of the healing that my body is still undergoing. Case in point: after being on my feet for 3 hours on Wed. at the holiday party (and I attended the IAH party before the English dept party, so it was really TWO holiday parties I went to on Wednesday) I spent the next 2 days either in-bed or on the couch because I WAS SO TIRED I COULD NOT MOVE--QUITE LITERALLY, I WAS CRASHED OUT AND CLEARLY MY BODY WAS SAYING STOP, YOU NEED TO REST.

But really, perhaps what people want to know is

"What is it like not to have breasts? How are you coping psychologically and emotionally?"

So this is the post that talks about missing my missing breasts, and why I chose NOT to do reconstructive surgery.

Because I do miss my breasts. Or let me put it this way, I miss MY breasts. It's not just the abstract concept of having a breast or the gendered nature of feeling feminine by being a woman with breasts, or even noticing that my clothes don't quite fit the same way (which is definitely true) but first and foremost, I miss MY breasts--the breasts I was born with, that grew with me as I grew, that I lived with throughout my teen years and learned to take pleasure in, sexually, as I grew into my adult sexuality.

And that last point--what my breasts mean to me sexually--is why I did not choose reconstruction.

The truth is, prior to my cancer diagnosis, I didn't think a lot about my breasts. I liked them because they were part of my body and, in general, they've worked well for me. They weren't so big that they became cumbersome to me, and they weren't so small that I couldn't fill out a dress nicely. They were, in the words of that immortal children's tale, "just right." But I have to say, that I found my nipples, outside of sexual pleasure, a bit inconvenient. In U.S. society we frown on women's nipples (maybe men's nipples too, but it's more acceptable to see them). Women need to cover up their nipples--anyone who has ever seen the machinations to which starlets will go to reveal all parts of their boob except for their nipple will understand what I mean. It would be considered unprofessional for a woman at work to wear a blouse and NOT wear a bra, especially if it was a white shirt or a tight blouse. And I always found wearing bras to be inconvenient for the most part. My way out, during winter months, was the camisole top.

I mention all of the above to give you a picture of how I pretty much treated, aesthetically, my breasts. How I feel about my breasts in terms of my sexual life is a different matter. And I know that saying all of this may be odd or make others feel uncomfortable, but the bottom line for me is that my breasts, my nipples, were most important to my sexual identity and sexual life.

So when I learned that breast reconstruction would allow me to aesthetically look the way I used to look but would not let me FEEL the way I used to feel, that pretty much sealed the deal for me. Because as I noted above, what I want are MY breasts--I want to feel MY breasts--I don't want to just look down and see that I have breasts or be reassured that my clothes will fit exactly as they had before. First and foremost, reconstruction would feel like a cosmetic choice for me; it would hide the loss of my breasts but would not speak to my emotional loss at their absence.

Let me just pause here and say that I know that my view and perspective is a pretty minority view and perspective. Anecdotally, in a very small sample of women who have had double-mastectomy surgery (like about a dozen) only one woman, my maternal aunt, elected not to have reconstructive surgery--and most of my female friends and family told me that if they were in my position, they would definitely want reconstructive surgery--that having breasts are VERY IMPORTANT to their sense of identity--to their sense of normalcy--to their sense of just being women.

I do understand this. Completely. I judge no one for their choice in wanting reconstructive surgery. Especially the desire to feel normal again--to feel like you are yourself again. To not want to worry about how your clothes feel or about looking so different--of feeling self conscious while undressing in a locker room or dressing room or even in the privacy of your bedroom and bathroom. I understand the desire to want to feel whole again--and especially with what plastic surgeons are doing nowadays with nipple tattoos--and the improvements in silicon inserts--breast implants and reconstructive surgery gives women who have had mastectomies breasts that are just like their former ones or ideal breasts that they always wanted.

And while, for the most part, my family and friends have been very respectful and supportive of my choices, whether they personally would choose the same route or not, what I've been surprised at is the reaction and assumptions from acquaintances and virtual strangers--that everyone assumes that I will change my mind--that the only reason I'm not choosing reconstruction is that all of this is too overwhelming for me and I will change my mind when more time has passed and I have healed. There have been nurses who have assumed I will be doing reconstruction while going through chemotherapy. Strangers have told Matthew that I may say I don't want reconstructive surgery but as a woman I will, of course, change my mind and get reconstructive surgery, I just simply don't know my own mind right now. Friends of friends have told me that I can now have larger breasts or the ideal breasts I've always wanted. Even extended family tell me not to be stubborn and to be open to getting breast reconstruction in the future, assuming that due to my contrary nature that I will secretly want reconstructive surgery a year from now but will be too proud to get it because I've been so vehement about not wanting reconstructive surgery.

Is there a possibility I will change my mind?

Yes, of course. I think I'd seem too truculent at this point if I say no.

But if I were a betting woman, I would not count on me changing my mind. There has never been a point, prior to my cancer diagnosis, during my decision making about whether to do a lumpectomy of both breasts or the bi-lateral mastectomy, during chemotherapy, and leading up to my surgery when I ever thought that I wanted to do reconstruction. There is nothing about reconstruction that is appealing to me. It is not a judgment on anyone's decision to do reconstruction--it is my own level of comfort, my own relationship to my breasts, my own sense of what I miss about my missing breasts, that leads me to this certainty.

I miss my missing breasts. I miss having part of the body that I was born with. I miss the absence of my breasts. But having new breasts--ones that aren't part of me, that don't give me any sensation or pleasure--would not take away from my sadness over missing my breasts. In fact, what I feel in my gut is that choosing reconstruction, for me, would be very wrong. It would feel wrong--it would feel false--it would not make me feel whole. On the contrary, it would remind me more starkly than the scars I currently carry with me, of what I have lost.

And perhaps, most of all, what I realized before my surgery, in looking at the images I was lucky enough to find on-line of a woman who also chose not to do reconstruction (click here to see her Flickr stream), was that I would be OK. I would be OK without breasts. I would learn to live without my breasts, and it will be weird (it is weird) but at the end of the day, it will also be OK--and that most importantly of all, my decision to not do reconstruction is the right decision for me.

[Addendum: I should say that my decision was reinforced by a pamphlet that my wonderful surgeon, Keith Amos, gave to me. It is distributed by a non-profit organization here in Raleigh, Myself: Together Again (click here on the link). It's a wonderful booklet that, in image and text, chronicles a young woman's bi-lateral mastectomy surgery and reconstructive surgery. It shows the scars, her port, the drains, the plastic surgeon's marks, the expanders, and finally what she looks like with her nipple tattoos and the silicon implants in. For anyone considering either breast augmentation or breast reconstruction, this is an important booklet to look at. I was glad to page through it, because my visceral reaction on seeing it was reassurance that I had made the right decision--reconstruction is not for me]

Tuesday, December 7, 2010

14% chance

Today Elizabeth Edwards died from metastatic breast cancer. She was first diagnosed in 2004, the day after John Kerry & John Edwards failed to win the 2004 Presidential election. The tumor (which she discovered herself) was the size of a half dollar. It was detected early and the prognosis was good because it had not spread to her body but was contained to her breast. She did a lumpectomy, along with chemotherapy and radiation. In 2006, over a year after her diagnosis, her oncologist said, "that I had a lot going on in my life . . . but cancer was not one of them" (taken from The Daily Kos). Then in March 2007, Edwards discovered that her cancer had spread to her ribs, hip, and possibly her lungs. Her oncologist, Dr. Lisa Carey, confirmed that there was no cure for her cancer but that it could be treated and she could live a very full life for the next few years. But that her cancer was terminal. (Here is the link with the original press conference that the Edwards' did at UNC Chapel Hill: http://www.nytimes.com/2010/12/08/us/08edwards.html?hp).

When I heard that Elizabeth Edwards had passed away this evening I cried. I'd like to be able to tell you that it was purely out of empathy and sympathy -- that my tears were for her young children, as well as her older daughter, her extended family and friends, and even for her estranged husband. But I cried not only in sadness for another woman felled by cancer, but because this particular woman, who lived in Chapel Hill, who had the same disease I have, who shared the same oncologist that I have (yes, Dr. Lisa Carey, is also my oncologist), and who had a similar prognosis, initially, to my prognosis--could be me.

There is a 14% chance that what happened to Elizabeth Edwards will happen to me.

There is a 14% chance that I will be going to see my oncologist for a follow-up appointment 2 years from now and she will be concerned about a symptom that I am exhibiting and in follow-up tests will tell me that the cancer has returned and it is in my bones or a major organ.

There is a 14% chance that just like Elizabeth Edwards, I will be living with stage IV metastatic cancer, trying to figure out how to live with a diagnosis of terminal cancer--how to live with the certain knowledge that my natural life span will be drastically cut short.

And there is a 14% chance that like Elizabeth Edwards I will not be here in six years. That I will die from the cancer in my body.

I'm scared. Not to the point where I feel paralyzed. And not to the point where I am going to spiral into depression. But in the here and now--on the night that Elizabeth Edwards has died, I'm scared. And I cried not only because a very public woman who had breast cancer died, a woman who lived less than 10 miles down the road from me, but because when I heard that Elizabeth Edwards had died today, I realized that that could be me. We have the same disease with a similar prognosis, were treated in the same facility by the same oncologist. How could I not feel freaked out and wonder if that will be me one day?

Which is why I can't say I'm a survivor. I know I've written about this in past posts, but I think Edwards death reminds me that I live with a certain amount of uncertainty. I want to be part of that 86%. I live every day with most of me believing that I will be part of that 86%. But then there are days, like today, where a shadow is cast, and I am reminded that there are the 14% of people who don't survive this disease.

The last thing I'll say, though, is that as selfish as part of my tears were, I do mourn Elizabeth Edwards death. Because I think a lot of what she said and did regarding her cancer diagnosis was exemplary and provide me with a model for how I want to approach my own future. In countless interviews after her 2007 cancer relapse, she reiterated that everybody has to die; in her case, she now knows what she's going to die from. She also said that what she wants to show people isn't a woman dying from cancer but a person living with cancer. And that this is the biggest message she has for people with cancer--not to focus on the dying but on the living.

And so in honor of Elizabeth Edwards, I'm going to focus on living my life as well as I can. I hope you will too.

Tuesday, November 23, 2010

A traffic jam/detour/pit stop/on my road to health

As those of you following my blog (and thank you for this!) know, last week Tuesday I had my last drain removed, and I was ecstatic! I mean, all day I just felt euphoric--the difference was both literal/physical and emotional/psychological. I was looking forward to all the things I could start to do, again, of increasing my physical therapy routine so that I could be on a golf course mid-December.

And then.

I woke up Thursday with a fever.

I had a head cold that I was battling on Tuesday, but I didn't think much of a little head cold--I figured the sore throat would go away soon and then all would be well--nothing could stop me!

Well, something has. Because it is day #6 of me waking up with a mild fever--and yesterday (morning #5) I finally went to see my doctor who confirmed that I have an adenovirus--and my symptoms (low grade fever of around 100-101.7, body aches/pains, sore throat, lots of phlegm) can persist for 2 weeks and I'm, potentially, contagious through Thursday, but most especially for someone like me who is recovering from surgery and the effects of chemo, my immune system is working really hard and so the risk for secondary infections (like pneumonia) is high, so my doctor has prescribed bed rest for another week! And she has especially admonished me to avoid crowd and children. Which means I'll be spending Thanksgiving with Bruno (I'm sending Matthew to his folks, even though he has vounteered to stay home and take care of me, but honestly, all I'm doing is sleeping and watching movies and reading novels. I'm not very good company right now).

It makes me very sad not to be able to join Jane & John for Thanksgiving--it has been my tradition since moving to Chapel Hill to spend turkey day at the Danielwicz-McGowan homestead--and I was especially looking forward to this year since Thanksgiving is my favorite holiday (who doesn't love a holiday devoted to eating and family--OK, racial politics with American Indians are problematic--I get that). The even sadder thing about my condition is that I have no appetite. So truth be told, I don't even feel like eating right now. Which was one big tip off to me that I really needed to see the doctor--me not feel like eating? Definitely something is wrong.

And of course since bad news or bad things happen in groups (often in 3's), yesterday was also the day that my laptop monitor decided to go on the fritz. I can "sort've" see the screen, but not really--enough for me to hook up my external hard drive and back up all the files that I need, but not enough to be able to read anything that I could open. So it's off to the Apple store for my poor little laptop (which is 4 years old--I've had it as long as I've been with Matthew).

So that's what's new in my world. It seems ironic (and I do think I'm using this correctly, unlike Ms. Morisettte) that right when I get my drain out and am finally mobile again, I literally am not getting out of bed because I just lack the energy and interest in doing anything other than sleeping. And of course it's just very unjust to lose my appetite right before Thanksgiving (sigh).

But I suppose I shouldn't be moaning and groaning too much. I mean, I may not currently have my "health" so to speak, but I am definitely on the road to recovery (hence the awkward title post). And I'm REALLY looking forward to the day when I get all my mobility back, when my hair grows back, and when I start to *feel* like I did before. And I guess that has me wondering: will I?

Tuesday, November 16, 2010

Drain, drain go away, today, YAY!

The drain is OUT!

YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

That's about all I have to say about that.

(oh, and I have a head cold -- sigh)

But let me repeat, THE DRAIN IS OUT!!!

So I leave you with a little George Michaels

Saturday, November 13, 2010

Marking and honoring my cancer experience

So the latest post-surgical update is that I STILL have not had my drain removed (sigh). I did go in last week to see Dr. Amos, and he injected an anti-biotic, doxycycline, up my drain, in the hopes that it would cause scarring in the area where my lymph nodes were removed on my right side, thus allowing the fluid in my body to by-pass the drain and be reabsorbed into my system. I can't have the drain removed until the fluid output is less than 30ml/day. Yesterday it was 45ml. Today seems to be hovering around 30-40. So unless tomorrow I drop below 30 ml, it looks like the damn drain stays in. I do have an appointment for this upcoming Tuesday, Nov 16 to see Dr. Amos again--at which point I will have had this drain in me for approximately 29 days or 4 weeks, since it will be 4 weeks come Monday that I'd had my bi-lateral mastectomy surgery.

(big, big, sigh).

I'm tired. Physically I'm tired from the surgery and lingering effects of the chemo (which can linger for up to 6 months). Psychologically and emotionally I'm tired of dealing with this drain. It is cumbersome. Imagine having a foot of tubing coming out of your body, about 4 inches below your right armpit. Imagine that it ended in a bulb slightly smaller than a deflated tennis ball and it was being held in place to your body by black surgical thread that tugged and hurt when you moved your right hand/arm in certain positions.

And this is in addition to the aches and pains from the mastectomy surgery--my left side is still a bit sore and the sutures on my chest are starting to itch.

Now, I want to say that all of this is very manageable--by which I mean, I'm not in so much pain that I require pills nor is this keeping me from fairly normal day to day activities. I can drive my car. I try to walk 1-2 miles a day. I keep up with my physical therapy exercises. I can cook and clean and when I wear the right combination of clothes, I can go out and about in the world without anyone knowing that there is anything different about me.

But it is wearing on me--having this drain in me also requires daily attention and I am sometimes reminded that I am attached to it very acutely (like when it starts to really pain me at the end of the day). And I also have to think twice about doing some very basic things--like dressing myself or taking a shower or lifting something with my right hand.

I'm *hoping* that tomorrow the scarring will really have worked and I can get this drain removed on Tuesday. Either that or I will need to have this procedure repeated, I imagine--I'll be writing to Dr. Amos to give him an update tonight. I'm keeping my fingers crossed that it will be closer to 35 if not 30.

So beyond the lingering remnant of having this drain, emotionally I'm doing OK. I've had a few melt down/crying jags post-surgery, as one could imagine, all of which coincide with me taking a shower. I think it's just hard for me to deal with the pain of showering (and it's uncomfortable to shower and requires a lot more thought and time and care than I normally require without this drain) and because it is weird to confront my body without my breasts but perhaps more with the scars and other parts of my chest looking so foreign. It's just really weird to have part of my body missing. And I want to say more about that later.

But what I wanted to acknowledge in this post are the ways that I'm already thinking ahead to marking and honoring this experience. Because I think it's important that I do something to acknowledge what I've gone through. Certainly this blog is one way that I've marked my experience--quite literally through the writing I've done around my diagnosis and treatment and surgery. And it has been enormously therapeutic for me to use language as a tool for my processing of this experience and for my healing.

Yet I also want to mark and more importantly honor this experience in other ways. Because it has changed me. I mean, of course it would--but I suppose what I mean is that for all the ways in which I've resisted typical cancer and especially breast cancer narratives, I would be lying if I said that I didn't feel somehow different after what I've gone through. And I have been thinking about what I want to do to mark and honor that type of change or this process or this trial....I still am not sure what kind of language to use to talk about my cancer. And I still think of it in the present tense, even after the chemo and the surgery. Because I just don't know that I'll really ever feel that I am cancer-free. I know that in the here and now I am N.E.D.--no evidence of disease. I know that I will one day, hopefully sooner than later, start to feel like a healthy person. Like I'm back to being me--that my hair will grow back in (it already is) and that I will gain back my energy and I will be back in the classroom and back to writing my manuscript and it will almost be like nothing has changed.

Almost.

How to mark and honor that which cannot be fully rendered explicable and communicable? How to mark and honor an experience that has been so difficult and painful and yet, in some ways, ordinary. I say ordinary not because I think it's "normal" to have gone through chemo and surgery and a cancer diagnosis, but ordinary because I think so many people have gone through and go through periods in their lives when they are not healthy--when they are impaired and lack energy and where negotiating everyday aspects of their lives seems like a herculean feat.

It's also hard to write about let alone think of marking and honoring an event that I'm still in the middle of--the surgery was only 4 weeks ago, I still have a drain in me, I will be on tomoxifen (a hormone treatment) for 5 years, and rates of remission are usually judged in 5 year increments. Yet another reason why I don't see myself as a cancer patient past tense.

And honoring...I thought carefully before using that word in this post. But it is one I choose deliberately--that I do want to honor this experience. Not because I am "glad" I had cancer and that it has "taught" me certain lessons. It's more that I want to acknowledge that this happened to me--and that what happened to me cut to my ontological and existential core. It has marked me, and I want to mark and honor the experience--to acknowledge that I have changed and to give it the gravity of acknowledgement that it deserves.

Anyway, I haven't quite decided what I will do--but I know it will not be a singular gesture. For example, I have decided to get a tattoo on my left inner ankle. I was going to do this in solidarity with my cousin Eileen when she and Jeanine (another favorite cousin) were visiting last weekend.


[This is Eileen wearing my strawberry syrup wig--I think she wears it better than I do!]


[Here's Jeanine at our dining room table--I swear I have a photo in almost the identical body language--we are startlingly similar to one another in that way]

However, with the drain still in me, I decided (and was advised) that it was better to wait. And I realized that getting a tattoo could be one way that I would literally mark myself--so while waiting for Eileen to get her tattoo done, I decided that I would go back and get a tattoo of a lotus, because I like they symbolism (and the actual look) of the lotus--and especially with the Buddhist meditation I used to do (and hope to get back into), I thought it was fitting to have a symbol of life and mortality.


[This is not the exact tattoo image I have in mind, but it gives you an idea of what I'm thinking of]

I also plan to run a 4 mile race in April, in preparation for one day running a half-marathon. I've never run in a race before, yet always wanted to. So I figure training for the 4 mile run and the half-marathon would be ways I could heal (and get stronger) and be another way to mark this experience.

And I imagine that there will be other ways that I will want to mark and honor what I've been through. A party might be nice (for those of you living in the Chapel Hill area, you will note that this is the first year in 6 years that I have not thrown an annual "housewarming" party--we're hoping to make it a belated "housewarming" and cancer anniversary party in April--so stay tuned!) and a trip somewhere might be nice. And maybe writing about this, as an essay or an academic article, a conference paper, or dare I say it: as a book, might be nice. I will have to think about what feels right to me as time passes. And I know I have to be open to changing my mind about all of this.

Anyway, I'm open to suggestions from the blogosphere (and from friends near and far) and I will certainly keep you posted about the drain situation after Tuesday, Nov. 16.

[UPDATE--MONDAY, NOV 15: Two friends, Jim & Ashley, just sent me a link to this NY Times Magazine essay questioning the pinkwashing of breast cancer activism--the ways in which a narrative and rhetoric of breast cancer as sexy and a disease that women will kick butt in has trumped other types of stories and experiences of the disease. When I read it, I felt like Peggy Ornstein had been in my head and reading this blog. I'm glad to know that mine is not the only dissenting voice about breast cancer out there]

Monday, November 8, 2010

Passing for "Normal" when I'm really a scarred, breast-less, chia-head woman

So my latest health update is that I STILL have a drain in me--the one on my right. It has pretty much been consistently draining between 60-50ml per day. I can't get it removed until it dips below 30 ml/day. And typically folks get their drains removed after 14 days (it will be 21 today). I emailed my surgeon last night, and he said that he wanted me to come into his clinic on Tuesday morning because he could help slow the output of my drain by injecting some "doxycycline" into my drain that would help.

[Aside: Everyone should be awed by the fact that I have a surgeon who responds by email ON A SUNDAY NIGHT and who did so within twenty-minutes of my initial email message to him. Dr. Amos ROCKS!]

Being the inquisitive person (and academic) that I am, I googled the following terms:

"doxycycline" and "drains"

And the first thing that popped up was a study titled,

"Successful doxycycline treatment of lymphatic fistulas: report of five cases and review of the literature"

which essentially described the injection of doxycycline to help stop the fluid output in folks who have drains (click here for the study).

So I'll know more after tomorrow morning about whether this is going to help slow my fluid output and most importantly WHEN I'LL BE ABLE TO GET MY LAST DRAIN OUT!!!

Because this sucker is annoying. I'm not in pain, per se, but I am not comfortable in my body right now. I am downright UNCOMFORTABLE sometimes--generally sore, generally feeling pinched and pulled (especially when I'm doing my physical therapy exercises), and generally feeling tired -- I'll have bursts of energy, but then I'll feel the energy draining from me.

And most of all, having this drain in me reminds me that I am not myself--that I am still very fresh from the surgery (which was 3 weeks ago) and that I am really not "normal."

Which I suppose begs the obvious question of what "normal" means...and the fact that most of us are not "normal" that, in fact, being "normal" is in itself an "abnormal" state.

But lets face it, most of us (most of you) are able-bodied people most of the times who do not have extraneous things hanging from your body, with fresh scars and with your hair growing back in.

I was reminded of this quite vividly the day before my Mom was leaving to go back to CA. We decided to go to the mall to see Secretariat (which was one of those "inspirational-heartwarming-sports-films") and afterwards we walked around the mall, a bit, and we stopped into Ann Taylor Loft. Now those who know me well know I *heart* Ann Taylor. So we made a bee-line for the sales rack, and I couldn't help myself--I found a skirt and a dress (yes, A DRESS) and decided to try them on.

Now, in the back of my head, I was wondering, "Is this a good idea?" but as I was wondering this, a sales associate came over and asked if she could start a room for me, and the next thing I knew, I handed over the dress and skirt and went searching for a blouse to pair with the skirt, so that I could get an idea of what it would look like. Then I headed to the dressing room, where I was directed to a dressing room that had my dress (but oddly enough not my skirt). I started to undress, beginning with my wig, and then my sweatshirt, top, and finally my jeans, which had my drain pinned to it. Because of the drain and the sutures from my surgery I have to wear a bra.

[Aside: It seems rather ironic to me that in the time since I've had my bi-lateral mastectomy, a surgery to remove my breasts, I have been living in a bra 24/7--that in fact this is the longest period I have ever gone in my entire life wearing a bra non-stop]

Anyway, I figure out that I can tuck the drain into my bra (since it would be nearly impossible for me to try to dress while holding the drain in my right hand, leaving only my left hand free) and then I turn and look at myself in the full length mirror--me in just my underwear and bra.

What I am confronted with nearly has me in tears. In the space of a minute I have transformed from looking like any other "normal" female shopper--a woman with a full set of hair and clothes--into this unrecognizable person--this figure with hair newly forming on my head in a black fuzz, a drain coming out of my right side ending in a bulb that is tucked into a bra that is flat, but where you can see part of my dressing tucked in to protect my sutures--and where the scars from my port and the lymph node removal on my left are visible. I am, in other words, utterly unrecognizable to myself--I am clearly not me, or at least not the me that I last remember being confronted with in a dressing room situation.

And of course at this moment the sales associate knocks on my door letting me know that someone had walked off with my skirt but they found it and she was leaving it to hang outside my door. And what I realize is that while normally, since I am not a shy person about my body or about my near nakedness, would have just opened the door and grabbed the skirt from her, this new me calmly thanked her and then waited. I paused to hear if there were other voices--or if the sales associate was hanging up clothes--and I wondered whether I should put on my wig or get dressed before trying to open the door to retrieve the skirt. Finally, I took a deep breath, cracked the door open, peeped out and then quickly darted out my arm and took hold of the skirt and then quickly shut the door.

I ended up buying both the skirt and the dress, although I did ask if I could return the dress at a later date, since I want to see what it looks like when I don't have to wear a bra and when I don't have my drain in. Both seem to be flattering to me right now, but I realize that when it comes to dresses and blouses and shirts, things are just not going to fit me the right way and may not flatter my new reality as a chestless woman.

The last thing I'll leave you with is my hair. Because right now, every time I look at myself in the mirror, what I hear is the chant from that commercial for Chia Pets, except in my head what I hear is:

"Ch-Ch-Ch-Chia Head!"


[I think you can see why I feel like a Chia head right now]

More later this week after I meet with Dr. Amos and figure out WHEN this damn drain is coming out!

Sunday, October 31, 2010

I'd make a lousy drug addict

So I'm a little less monstrous right now. On Wednesday I had 3 of my 4 drains removed (woo hoo!) but one on my right is still attached to me (perhaps I should come up with a name for it, my constant companion...drain-o?). Most of Wednesday was spent waiting--here's me on the 2nd floor of the UNC Lineberger Center, photo taken and sent courtesy of one Rebecca Walsh and her trusty iPhone:



[This is me trying to be patient, not something I do well--to repeat a chiasmus I've used before, I'm neither a patient woman nor do I want to be a woman patient.]

Once we were in the room, I got to don one of these designer gowns (which makes my ass look huge, but of course it makes everyone's ass look huge), and to while away the time I started to do my physical therapy exercises--the one below is called "climbing the wall":



Of course it also looks like I'm being held up or surrendering (but never to cancer damn it!)

Anyway, why I've titled this post "I'd make a lousy drug addict" is yet another funny anecdote in my cancer saga--this one involving percocette. So what I'm about to relate is not for the squeamish--I'll try not to be too graphic, but if saying the word "drain" leaves you a bit queasy, just stop right now.

So part of my feeling so "othered" and monstrous has to do with these drains that were put in me. They are called "Jackson-Pratt" or "JP" drains for the guy who invented them back in the day. Essentially because of the surgery there is a lot of excess fluids, and the drains are necessary to remove said fluids from my body and thus preventing fluids to collect and cause all sorts of problems for me. I had four of these drains, 2 on either side of me, with about a foot of tubing coming out right below my armpit--and it turns out there was about an equivalent amount of tubing INSIDE each armpit, so I had 2 feet of tubing underneath each arm. The foot of tubing that was outside my body ends in a bulb or ball approximately the size of a tennis ball--except imagine that it is made of a clear plastic and that you could squeeze out all the air so that it was flat rather than round--except now imagine that this flattened bulb inflated itself with fluid that comes from the drains. Got that? OK, moving on.

You can well imagine that this is NOT comfortable. Let me repeat: NOT COMFORTABLE. Of course, just inhabiting a post-surgical body is not comfortable, let alone a post-surgical, post-mastectomy body. But the drains definitely made things more difficult to negotiate (I'll let you imagine what life is like when you have to pin 2 tennis balls to both sides of your body). And I LITERALLY HAD HOLES IN MY SIDES WHERE THE TUBES CAME OUT. Seeing that in the shower was enough to make my little head spin, and visions of The Matrix danced in my head. And Frankenstein (or to be more precise, Frankenstein's monster).

But lets get back to the drugs.

So I was a bit worried about how much pain might be involved in removing the drains--and in expressing my concern to my nurse Delma, I told her that I had thought that taking a prophylactic percocette might help with the soreness or pain that removing the drains might cause, if drain removal was, indeed, going to be painful. So Delma, being ever helpful and seeing my anxiety and frustration at the long wait I had, ordered some percocette for me--and lo and behold, I had 2 tabs in front of me -- which I took.

Those of you who know me well and have seen me drink half a glass of wine (or beer or an amaretto sour) know that I HAVE NO TOLERANCE FOR SUBSTANCES. I am a light weight. I am lighter than a light weight. So you may wonder WHY I took 2 tabs. I myself asked the nurse who brought me the tabs, why 2? To which he told me that there were folks who took 2 15-mg tabs and that since these were only 5mg, I should be fine. And since I figured I shouldn't turn down free drugs (and since I could only imagine that removing the drains would not be fun) I took them.

Removing the drains turned out not to be that bad. There was some discomfort and a few moments of sharp pain, but for the most part, in the words of my surgeon, the drains slipped out "like wet noodles." I will say that it was one of the strangest feelings I've ever experienced--I have no words to describe the feeling of having a foot of tubing that had been coiled under my armpit pulled out of me. Except maybe, ultimately, the feeling of relief.

Of course, the percocette tabs didn't hit me until I got home (since it takes about 30-45 min. for the drugs to kick in). Since my appointment was originally at 11:30am I didn't have lunch--and I didn't get home until 4pm and percocette really isn't something you should take on an empty stomach, so I tried to eat a late lunch, but I couldn't even sit up straight at the dining room table. Instead, my Mom got me a piece of toast while I lay, catatonic on the sofa, muttering to her over and over again,

"I feel weird! I feel weird! How do people get addicted to this stuff???!!! I feel so weird!"

This feeling (and my endless chanting of "HOW DO PEOPLE GET ADDICTED TO THIS STUFF!!!" lasted all afternoon and evening. I went in and out of a state of addled wakefulness until I finally passed out upstairs at 9pm and didn't wake up again until 9am. Of course the answer (that Matthew provided) as to why people get addicted to painkillers like percocette is that most folks do NOT have my reaction--they do not experience taking 2 tabs of percocette as an exercise in being paranoid and delusional and nauseous and looped out of my head (not in a fun "stoney" kind of way but in a "I'm-having-a-bad-trip" kind of way).

Luckily when I woke up Thursday morning it all seemed to be out of my system. And so in case anyone was worried that I'd developed a taste for either pot (from my attempts at self-medicating during the nasty nausea I had for 2 months on the AC chemo) or from the percocette--rest assured: I would make the world's worst drug addict.

Monday, October 25, 2010

Recovering at home

So a week ago I was in the recovery room just waking up from the bi-lateral mastectomy surgery. If you have ever had surgery, then you know how odd it is to wake up after having heavy-duty anesthesia. First of all, you wake usually into pain (at least I did) and even though you know, of course, that you just had surgery, it's very disorienting/confusing and you're really not sure what's going on or why you can't quite open your eyes. And then when your physical reality catches up--in my case some low level but none-the-less acute pain, some intense thirst and a bad case of the shivers (I was SO COLD my teeth were chattering) then you just want to have your immediate physical needs taken care of (morphine drip, check--ice chips/sips of water, check--mounds of blankets, check).

What I can say a week later is that the recovery from the surgery, both while staying on the 6th floor of UNC Memorial hospital as well as at home, has been easier than expected. Or perhaps the better way to put it, it hasn't been as bad as I thought it was going to be. The pain was definitely manageable with the morphine drip (which I got to control)--so much so that by the next morning I didn't need to push the little button anymore. And the pain has really not been bad at all--I went straight from morphine to alleve (I'm allergic to ibuprofren, which is a bummer since I've heard the wonders of it for aches and pains). There is constant discomfort and a fair amount of soreness, but it's tolerable and not greater than what I've experienced after a very intense workout session or a round of golf over the summer with me schlepping my own bag.

A physical therapist came to visit me and gave me a series of exercises to do--but even in the hospital he said that my range of mobility was pretty good, and in fact, I've been most surprised by this--because I was expecting my arms to be pretty impacted (and hence my hands/fingers) but truthfully I'm at about 85% in terms of range of motion--which isn't bad a week after surgery--and both my surgeon and the physical therapist were pretty confident that I'd be 100% in 4-6 weeks. I've got a series of 5 different stretching exercises that I do 5 times a day, and I'm also walking every morning with my Mom--adding a little bit more every day, so I'm also hopeful that I'll be back to walking 1-2 miles in another week.

And emotionally/mentally? Well, it hasn't been easy, but I also think things haven't quite sunken in yet. I mean, I have been low. It's just sort've a depressing thing to go through, and I definitely haven't felt like company--especially with my drains in (which is such a sci-fi freaky thing to have) I have not wanted to see a lot of folks and today is the first time I've really spent any time responding to email messages or replying by phone to anyone (and there are some folks I still need to call back, so if you are one of them, I will call soon, I promise). I wouldn't say I'm terribly self-conscious about myself, my looks. But this is different. And so part of it is I feel self conscious. As in, I feel like a monster--that I am monstrous. I have all these scars. I have these tubes and drains. I don't have hair (although I should mention that it is DEFINITELY growing back and it's like I have a fresh crop of black grass growing on my scalp--very exciting!). But really, I am unrecognizable to myself right now. I look bad and emotionally I feel bad--I miss my breasts. Or perhaps it's that I feel odd having part of myself cut off and missing (and I'll save my reasons for not doing reconstruction for a later post).

So that's the update. There's more I could muse upon, but given my still low energy level, I'll just say one last thing, and that's a piece of very good news that my wonderful surgeon Dr. Keith Amos (who, I just learned, sometimes reads this blog, so if you are reading this Dr. Amos, hello!) shared with me on Saturday morning (and yes, he's THAT kind of surgeon--one who calls his patients on the weekend!): the pathology report came back negative for cancer in the breast tissue that they removed (both left and right) as well as the lymph nodes they removed from my right side. So it means that I'm N.E.D.--no evidence of disease. At least as far as we can tell at this point (knock on some heavy wood).

And while some folks have asked if this means that I'm "cured"--the truth is, I don't know that I'll ever feel cured. I don't know that I'll ever feel like I'm cancer-free. Maybe when I've had a few years distance from all of this, I'll feel differently, but right now...I just think that I'll take this good news and then hope for the best.

Finally, I should mention that I'm being taken care of VERY WELL by my Mom and by Matthew (and Bruno in his own way). I go in for a follow-up appointment with Dr. Amos this Wed and will send another update after that appointment--I hope to get my drains removed by that point (it'd be nice not to feel like I'm plugged in, Matrix style). Anyway, more is forthcoming in this blog space later this week.

Tuesday, October 19, 2010

Post-Op report

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]

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.

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.

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!

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)

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???!!!!

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.

Friday, September 3, 2010

Counting down the days 'til September 16

This is going to be a relatively brief post to fill you in on my chemo schedule and how I'm doing health-wise.

Yesterday I had my 3rd dose of Taxol and my 7th dose of chemo, which means I'll have my final dose of Taxol on Thursday, Sept. 16--which will also mark the end to my chemo treatments -- WOO HOO!

My white blood cell count took a bit of a plunge (3.9--normal range is 4.0-12.0) so I went in for another neulasta shot today, which should hopefully help get my numbers back up, although I'm still considered immune compromised because of the chemo. So I'm still being cautious--trying to avoid kids in childcare and college-aged kids and anyone else who may be sick--which is why I've stopped hugging and shaking hands (hope nobody takes it personally).

The odd news is that while my hemaglobin and hematacrit (RBC) counts stayed pretty much the same--right below the lowest level for normal, my platelet counts did an incredible leap from 97 2 weeks ago to 244. To give you an idea of what is normal, 150-400 is a normal platelet count range and they get nervous when you dip below 100. So it just seems odd, to me, that I jumped all the way from 97-244. Wouldn't they be suspicious if they saw you take the GRE's within 2 weeks and you elevated your verbal scores this quickly?

At any rate, I'm doing OK--I'm looking forward to being over with chemo--I'm not looking forward to the side effects from both the Taxol and Neulasta, which should hit me tomorrow afternoon and which will consist of severe joint, muscle, and bone pain. I'm also not looking forward to the double-mastectomy surgery, which should be scheduled for mid-October, with a 2-6 week healing period, but it has to be done, so I may as well get it over with. I'm trying not to think ahead to the surgery because I know it will be hard and I know I will feel freaked out--so I figure one thing at a time.

Hope all of you are healthy, happy, and well, and if you aren't any of those things, well I hope you will be healthy, happy and well soon! And for my U.S. compatriots, HAPPY LABOR DAY!

Tuesday, August 31, 2010

My fuzzy brain--lets hope it's temporary

So today's update on my physical symptoms include some shortness of breath, dizziness/light-headedness, increased neuropathy (lack of sensation) in my fingertips and some pins & needle sensation in my back that is intermittent, and then the usual fatigue/exhaustion. I'm no longer waking up at 5am and 6am--now I'm sleeping 9-10 hours a night, which is definitely unusual for me--I'm typically a 6-8 hour person. I think the combination of anemia and chemo are responsible for the first two symptoms, which are relatively new--the Taxol is responsible for the pins & needles/neuropathy. I've decided to not drive right now because I figure that trying to shift (I have a manual transmission) and steer when I'm having neuropathy in my fingers is not such a smart thing. Add on the light headed issues and I think that everyone is better off with me off the road.

Anyway, what I wanted to write about today is a concern that I've been having ever since I was 2 treatments into my chemo and started noticing that my cognitive abilities had changed--that my memory wasn't what it was, that I was substituting words (sort've in metonymic/synechdochal fashion, things like when I wanted to say "stove" but instead said "oven"--although that's more relational than metonymic/synechdocal)--also, just now I realized that I typed "every" for the word "ever" and started to write "know" for "now"--which I know may just be simple typo stuff, but it's not just that--it's something else going on in my head.

I know I've used the phrase "chemo brain" before and explained the phenomenon in some past posts, but I decided to do some light researching of this term, and here's what I found:

*A description on the American Cancer Society's site (click here) that gives details about the phenomenon.

*A two-part New York Times series on the details of chemo brain (Part I) and the treatment of chemo brain (Part II).

*A whole website called chemobrain.com devoted to the phenomenon which goes by the medical term "Cancer-therapy associated cognitive change" (sort've a mouthful, so I'll stick to chemo brain for the time being).

Now, I want to reassure everyone--I'm not nearly as bad as some of the folks in the New York Times articles. I have not driven away forgetting my groceries or Matthew. I am still able to multitask (albeit slower than normal and perhaps with less balls in the air), and my memory is not that impaired.

However, I feel I am not as sharp as I used to be. Really--I'm not. I just know it. You know when you know yourself really well and you feel off? That's how I feel--mentally, I feel off. I'm not as quick. It takes me longer to process information that I read and hear. And most notably, I have not had any real interest in working on anything too intellectual. Now, I KNOW I'm on a medical leave of absence and I do NOT have to be working on my Tiger Woods chapter. But perhaps it's the academic in me--perhaps it's that I want to feel more "normal" and what I'd be doing right now if I wasn't going through chemo is teaching and writing so I want to feel like I'm my old self--or perhaps I'm just one of those crazy/driven people who always feels she has to be working. Whatever it is, there is a nagging in the back of my brain that says I should try to work and try to write. But I'll be honest: I'm afraid. Because I don't feel sharp right now. Because my level of concentration and focus is not what it used to be. Because sometimes just reading and replying to email messages is more than I feel up to, energy wise.

But really, what I fear is that right now, if I tried to write, I wouldn't sound smart. I wouldn't be smart. I would just make random points that aren't coherent or fully analyzed or that say anything. That I'd just be writing jibberish.

But above all, what I'm worried about is that this fuzzy, foggy feeling in my brain will be permanent. That I'm going to be one of the 50% of people who have lingering chemo brain side effects. And that scares the hell out of me because my brain is my bread and butter. Thinking well is what I've always prided myself on--and along with thinking well, writing well is also top of the list, and lets face it, the two go hand in hand. What happens if I'm only able to focus for limited stretches, if my cognitive sharpness doesn't return? If I'm quite simply permanently brain damaged from the chemo? The loss of my hair was traumatic--but at least I knew beyond a shadow of a doubt that my hair would grow back. This chemo brain business--this is frightening to me. And I suppose I should be grateful that I am only experiencing a mild version, mostly in some light memory issues, some aphasia, some concentration and analysis slowness.

Yet for someone who is used to be highly functioning in the mental category--whose mind has served her well--very well--in years past, this all feels like a big deal to me right now. And I know if it's permanent I'll manage. I already do a lot of the things that they recommend to help with chemo brain; I suppose being hyper-organized before chemo helped. But it's my ability to make connections--to make intellectual connections and analyses that I fear may be impaired. I suppose only time will tell.

And now, just to show that my sense of humor isn't impaired, here's something to make you laugh:

Tuesday, August 24, 2010

My life, my death, and other existential musings

[Health Update: I'm beginning to feel neuropathy (tingling/loss of sensation) in my fingers, which makes me feel arthritic, and I have a fair amount of pain/discomfort in my joints and muscles, but for the most part alleve and percoette take care of those Taxol side effects--which shouldn't last longer than another day or so. I'm definitely anemic and if my platelet count drops lower will probably need a transfusion and will need to postpone chemo, which also means I'm very fatigued lately. But other than all that, I'm doing OK--my brain is less fuzzy on Taxol than on AC, and I'm really *hopeful* that chemo brain is temporary!]

I've been thinking a lot about my death lately. I don't mean to be morbid and you shouldn't worry. It's not that I think that my cancer will spread and I'll be dead in the next five years. I mean, sure it could happen. But at this point, that scenario feels only slightly more likely than the one in which I am killed in a car crash. In other words, generally speaking I feel hopeful and positive about my cancer treatment (both drug and surgical related) and my chances of survival (remember, it's 84% survival rate for folks with stage 2 breast cancer), but lets face it, a cancer diagnosis and going through the rigors of chemo does leave one -- or rather leaves me -- thinking about my own future demise.

Because the reality is, whether it's cancer in the near or far future, another fatal disease, a fatal accident, or the rigors of aging, I will die. We will all die.

And I say this not to throw a dark pall over everyone--and I hope this doesn't freak anyone out, those of you who have a natural fear of death and dying, a natural denial reaction to our human state--but I've just been thinking about my mortality lately--and about what the end may look like, feel like, and more importantly, what I want to have done--how I want to have lived--before that day comes.

I've been watching films with certain death bed scenes--and both interestingly enough are films of stage plays that feature the luminous Emma Thompson: Wit by Margaret Edson and Angels in America by Tony Kushner. I don't want to give too much away for anyone who hasn't had the pleasure of seeing either/both plays, but lets just say that there are characters who die in hospitals in both--and whose deaths are portrayed rather starkly. And it didn't freak me out at all to witness this, perhaps because I assume (hopefully correctly) that my end will not look like that. I do not anticipate dying alone and lonely in a hospital room, in pain or in a coma. I don't anticipate living a life in which I would have no loved ones at my bedside--and I would hope that I still have the option of either hospice/palliative care so that my end will not be as grim.

But as I said above, it's not so much what my end will look like, who will be with me, how I will feel, or what my last words will be (by the way, there's an interesting This American Life piece on "Last Words" if anyone is interested in listening to it), so much as what do I think my life will be like before I die--what will I have accomplished and how will I have lived?

And one thing that I feel blessed is that I think I've lived well. What I mean by this is that I really don't have any complaints or huge regrets. I've been very lucky--to have a profession I love, I have loving family and friends, and I live in a developed nation and have resources, economic and otherwise, that enable me to lead a very comfortable life.

Of course, this doesn't mean that I'm ready to go. And I'm not going to give you a list of things I hope to do before I die. I don't really have such a list--a bucket list if you will. I mean, yes, it'd be nice to walk on the Great Wall of China or to see Angor Wat. I'd like to raise a child and to finish my book. But I think what I'm trying to get at more is a spiritual or existential sense of what I'm doing here and what I want my life to mean, to count for.

And what I wonder is, what should my life be for? Clearly I'm not all that interested in increased wealth--being a university professor is not going to put me in the millionaire club anytime soon. And I hold no delusions of academic fame, which has to be taken with a grain of salt because being famous in your field of study really has little cache outside, well, your field of study. Do I hold delusions of philanthropic or pedagogical grandeur? Do I secretly wish for my Mr. Holland Opus moment? To be that inspiring professor who changes people's lives? Again, it seems fleeting and ephemeral and perhaps not the point of being a good teacher if you are hoping to get accolades like that.

So is it enough that I just try to be a good human being? Is that, perhaps, the thing that I should be focused on? Not worrying so much about career advancement or "making a difference" in the world, but simply to follow the medical oath of doing no harm. But is that really all that I should be thinking of? Shouldn't my life be more than just doing no harm--shouldn't I have goals and ambitions, dreams and desires, that I work towards? Isn't that also part of being human--to have want, to want things.

I don't really have any other words of wisdom (and who am I kidding, these musings are more random than wise) other than I do know, to return to the deathbed scenario, what I don't want.

I don't want to have regret. I don't want to have lived my life not doing things out of fear. I don't want to live a life without compassion and empathy. I don't want to live a life without passion and engagement. I don't want to live a life without intellectual curiosity and the pleasures of savoring meals in the company of people I love. And I don't want to live a life where I didn't try my best.

And maybe it would be nice to go to Tuscany too...