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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,

[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?


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
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:


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!