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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.


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]

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