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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!


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.


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!