Email #8 Chemo

I just uploaded my Bonnaroo pictures, and I thought you might enjoy a photo of the lengths we had to go to to protect my mastectomy incisions from the seatbelt. Truth be told, the car travel to and from Bonnaroo was more painful than just about anything else I did at Bonnaroo. That's three pillows (and the ubiquitous Starbucks cup).Anyway, just a quick update today...

Fun Fact of the Day: Did you know that the US Conference of Mayors recently recognized Louisville as America's "most livable" large city? Totally deserved. Except in mid-February when it's &%$&^ cold and %&&$#!! grey and &%$%!! gloomy...

Anyway, chemo starts on July 3, and I'm getting my chemo port placed on July 1. (yes, Megan and Jana, I finally decided that I should get a port... I'm still VERY, VERY uncool with the idea of one more foreign object in my body, but I'm trying to tap into my inner science fiction fan to try to reimagine it as a "neat thing.")

I've been told that chemo means one crappy week followed by two good weeks, so I am going to try to do some traveling during those two "good weeks" this summer. I'd like to hit NOLA and New England, at least, so those of you in those locales, please drop me a note and let me know any BAD dates to visit in July and August.

And yesterday had a full FOOT of hair cut off... I should have done it a long damned time ago. It's pretty cute!

love to you all,
xoMRC

Crawling out from under the Rock

I don't mean the former wrestler. That might have meant that I had had a good couple of weeks. And I'm not sure I'm really "crawling" out so much as peeking.

Jason just came into the kitchen and stuffed a Red Sox cap on my head and gingerly tucked all the hair that he could under the cap. He's trying to show me that I will be "cute" bald. That's because I sent him a link to Bald is Beautiful, the website of an ovarian cancer survivor (and fellow Columbia grad-- though she went to Barnard) who decided that she was so gorgeous bald that she became a bald model and a cancer activist. (I'm oversimplifying-- check out the blog)

It's been a dreadful couple of weeks. Pretty much since Bonnaroo I've been very blah, mostly because I am in constant unrelenting pain. It's like someone is nailing nails into my non-existant breasts all of the time. It was so bad this week that my plastic surgeon refused to "inflate" me. He says he hasn't seen this much pain this far along in a long time. And sometimes I wonder if he thinks I'm full of crap. But I'm on a steady diet of Advil, Darvocet, and Valium at all times. Not too good for the noggin. Perhaps this is a preview of what chemo brain will feel like.

The big news is that chemo starts a week from today-- July 3. And Tuesday, July 1, I have to have surgery to put a port in. For some reason the whole port thing has me absolutely berzerk. I do NOT want to do this, but everyone swears that chemo will be too hard on my veins. When I got home from that dr. appointment-- the one informing me of the port stuff-- I had a total sobbing meltdown.

Jason has been doing a good job keeping me busy. He'll be gone one week in July and the entire month of August (including our shared birthday weekend, which burns my butt). Sunday we went to a Louisville Bats game (they won). Yesterday we went to Waterfront Wednesday, a free outdoor concert featuring Celtic band the Elders and a performance by Sonny Landreth.

Students have started to swing by. One brought me dinner on Saturday and three kids came for an impromptu visit that lasted nearly three hours on Tuesday.

On Tuesday too I had lunch with the "breast cancer girls" who basically assured me that most of what I am feeling and experiencing is 100% normal. But more importantly, it was super important to spend time with women who have come out on the other side of this and are beautiful, happy, and vibrant.

Another setback has been that insurance won't cover anything related to my fertility issues. So if chemo sends me into early menopause, that's all she wrote when it comes to spawn of my own creation. I'm pretty much at peace with it, but that was certainly the source of another meltdown around a week ago.

I do find it a bit ironic (am I using that word in the right way or in the Alanis Morrisette way?) that I've always been totally squeamed-out by the idea of breast feeding. The idea of a wee one latching onto your boob and slurping away always made me go "ew." (Although the idea of Johnny Depp doing the same thing has never made me go "ew." Quite the opposite.) Well, that's now out of the question.

AND back when I was pregnant, I was totally happy-happy-joy-joy about the whole thing EXCEPT about the idea of actual childbirth, whether it be natural or C-section. Just ten weeks or so into my pregnancy and I was already having panic attacks about the act of birthing. Of course, back then that fear disappeared tragically. But now I may never even have the option of experiencing that fear again. (Don't worry, it will be replaced by new fears: the fear of adoption agencies taking a look at my lifestyle, my credit rating, my health... the fear that my foster kid would be better off with a mommy AND a daddy or a mommy AND another mommy or a daddy AND another daddy...)

Email #7 Back "Online" June 21

Thanks so much for all the notes in the past week or so. I'll get back to you all asap.

Since I got home from Bonnaroo, I've literally "powered down." It's been me on my back on the couch all day every day. The decision to do Bonnaroo this year ended up being awesome for the soul and terrible for the body.

The festival does an excellent job providing access for people who are mobility impaired. Our campsite was just a two minute walk from the main gate, I never had to wait in line, and if I'd wanted to, I could have sat in special access seats for just about every show. We borrowed an air mattress from a friend and that turned out to be even more comfortable than my own bed.

All that being said... by the time I got home my body felt as bad as it did the first few days after surgery and I've spent this whole week clawing my way back to where I was before I went to Bonnaroo.

Worth it? You know, it was worth it for four whole days of NOT being "Cancer Girl" alone. Add to that Willie Nelson, Pearl Jam, the Swell Season, Chris Rock, Ben Folds, Drive by Truckers, literally the best line-up of bluegrass artists the country has to offer, and like 100 more artists... it was worth it. I keep having to remind myself of that.

So, the pain drugs are still getting in the way of my ability to read (or "understand," I should say... I can read just fine). But two brilliant friends of mine sent me the DVDs of seasons one and two of Battlestar Galactica, and now I am a fracking addict! I find myself rationing... "No, Chip, SIX episodes is too much for one day." Holy cow. That's some good tv.

Unfortunately I've entered the "expansion" stage of my reconstruction, so weekly I go to the plastic surgeon and he (lovingly) injects 60ccs of saline into each of the footballs in my chest. Each expansion gives me a half a cup size and renewed soreness and pain as my muscles stretch. And as I check out my Franken-boobs and consider the prospect of more weeks of soreness, I can't help but wonder if I couldn't be perfectly happy going through the rest of my life as an A-cup. After all, my Ma has always been an A cup and she seems perfectly happy. Of course.... she's a crazy cat lady who probably hasn't had sex since the 1970's... but, she's happy.

(Back when I was a kid, in the sports section of the New London Day there were ads for strip clubs, and I remember there was one performer who used to swing into town regularly. Her name was "Busty Heart" and her measurements were advertised as, like, triple G or something. I wonder what Dr. Thornton would say if I went into his office and said, "You know, I think I'd like to keep going til I'm a triple G.")

(OMG! Busty Heart has a wikipedia page!!! http://en.wikipedia.org/wiki/Busty_Heart She is 46H-22-36. Well, bless her heart.)

Speaking of "bless her heart," I went to have a pre-chemo echocardiogram on Tuesday. That's an ultrasound of your heart. And apparently the lab tech didn't read my chart or something before she started on me because when she undid my hospital gown and saw the Franken-boobs, she GASPED, dropped my gown, and said, "Oh my god!" Totally understandable, and I was totally not offended, but it was a little bit unsettling. What was MORE unsettling was the fact that she ended up calling another lab tech to actually do the echocardiogram because she was afraid of hurting me... but she stuck around and chatted with me and when she found out I was unmarried, single, childless, and DIDN'T OWN A DOG, she started to WEEP!!!!

Bless her heart.

For my research-minded/science-geek pals, right now my planned chemo is a combo of taxotere and paraplatin for 6 months and a year of herceptin. (Last week, I thought it was called herpecin, and was totally confounded when I googled it and found it to be a treatment for herpes. I was like, "HERPES? Is there something they're not telling me??")

Anyway, that's all the news that's fit to print. Congrats to the Celtics. And congrats to Jamie Lynn Spears for not giving her kid too much of a stripper name.

And I send super special love to my Wisconsin support.

love to you all,
xo
MRC

Email #6 Brief Note June 11

Hi folks,

Hrumph. I've started this email a dozen different ways, but none of them sounded quite right. So, I'll just jump to the point.

The oncologist trip yielded the first "bad" news I've had for a while. While I'm hunky dory and healing well and feeling much better than I ever thought I would at this point, it turns out that the tumor was much more agressive than the doctors initially thought. And that means I'm looking at a pretty aggressive round of chemo to come.

I don't have much in the way of details; my brain kind of turned to oatmeal when the word "aggressive" came out of Dr. Williams' mouth. I have another appt with the oncologist in two weeks to tell him what I've decided. But the recommendation is 6 mos of chemo-- once every three weeks-- and a year of hormone therapy. I have at least four weeks before I can start the chemo, and I may delay it a bit longer so I can travel and soak up some summer fun before I have to dig in and deal with it.

Ma was devastated. I had to take her to the airport right after the appt, and I felt so, so bad putting her on a plane in that state. I think we were both pretty convinced that I might escape chemo totally-- or at least qualify for some weeny chemo. I'm pretty shaken up, too, but I just need some time to get used to the idea.

Anyway, now that I am up and running at around 75% of my usual self (I'm even driving now!), my priority is to have the best summer that I possibly can. So, with that in mind, I've decided to go to the Bonnaroo Music Festival this weekend. Jason and I got tickets back in March, and as soon as I was diagnosed I basically wrote off the possibility of going. But Jason has assured me that all I have to do is go and have fun, and he'll take care of everything else. (When else am I going to get to go camping and have someone else do all the crap work like setting up tents and whatnot? It's like having my own sherpa!)

So, that's the news. Not as good as all the other post-surgical news. But, you know, I just have to take it all in babysteps.

Hope all of you are well.

Lots of love.xoMRC

Email #5 Brief Note June 10

Big day today-- those of you who told me that getting my surgical drains removed would "change my life" were SO RIGHT. Today has been the very, very best day since my surgery. After the 5 seconds of peel-me-off-the-ceiling pain of having my drains removed, I've been soaring. I feel like I could dance the lambada (not really, but compared to the way I felt with my drains IN... seriously).

And tomorrow is the next and last Big News day for a while. Tomorrow I meet with the oncologist to find out what he thinks about chemo. I'll drop you a note to let you know how it goes. Ma's heading home tomorrow, and by next week my time is finally my own and I will start getting back to y'all on an individual basis. Between my sheer exhaustion and the constant company, I've found it impossible to establish anything resembling a routine.

But again, thank you all from the bottom of my heart for all the love and support. Continue with the crossed fingers.

Lots of love,MRC

Email #4: No Subject June 4

Hi folks,

Sorry for how long it's taken me to get online. Figures, for this rabid writer/reader that the ranges of motion most effected by the surgery has been those most required by acts like typing or reading. I'm still struggling to hold a book open, and this email will still have to be short.

Today was my first post-operative dr appointment, so I have a lot of good news to share. The report whose name I forget (I keep wanting to call it the "toxology report" and that's because I've been watching too much HOUSE/Law & Order/etc... ) came back to say that (a) they are 100% sure there was no cancer in my sentinal lymph node (b) there was no detectible cancer in the right breast and (c) the tumor was .3 cm smaller than it appeared to be at the time of surgery. And all together that means my cancer was Stage One. Dr. DeWeese said it was the "best possible news" given the circumstace.

Chemo, he says, is not off the table, though. I will have an appointment with an oncologist soon to talk about life expentancies and rate of recurrance. But it looks good. It's very exciting news. And it's truly unexpected, insofar as I'm concerned. I feared the worst (what with my rock star lifestyle and all, ha ha).

The recovery process has both been way better than I expected and way, way worse than I expected. The first few days were WAY better than I expected. I was pretty well convinced I'd bounce back in record time. It wasn't until I got home from the hospital that things got really bad pain-wise. While I make small improvements every day ("Yay, today I can flush the toilet on my own!" "Yay, today I can get from standing to sitting!!"), it just doesn't seem like enough to me. I woke up this morning and burst into tears. I'm just sick of being in pain and sick of being a patient. When I told my doctor all this he basically said I was being too impatient. I could expect a week to ten days more before I feel better.

People have been awesome. My mother is pretty much convinced that I'm the most beloved teacher at my school based on the volume of cards, flowers, and food I've received. Every day a different teacher shows up with a whole bag of dinner. Ma has bent over backwards. Jason is home now and has been excellent about listening to me and helping me out.

Truth be told, I've been so preoccupied with the pain and my limitations that I've not started processing the more emotional elements of the surgery to any great degree. Over the past few days I have gotten out of the house a couple of times and my greatest self consiousness has been with the stoop of my walk and with the two grenade-sized surgical drains hanging at my waist (basically I have two muumuu type dresses and that's all I can wear until I get rid of these drains. It doesn't help that it's pushing 90).

Anyway, thank you so much for your love and concern. I feel very lucky right now despite my sour mood. I'm sorry I've been so quiet. Hopefully things will start heading back to normal-ish in the next few days.

xoxoMelissa

Email #3: Here We Go May 28

Just a brief note to say thank you and love you to all of you. Thanks for the sweet emails, the cards, the flowers, the care packages, the general LOVE you have thrown my way these past few weeks. I am so lucky to have people like you in my life.

In a half an hour I can't eat or drink anything, so I am headed to bed. My mom arrived this morning (after an overnight weather-related delay-- I felt so awful, she was SO sad) and my uncle Tim arrived this afternoon. They are such great sources of support.

I'm sorry that I haven't gotten back to all of you lately. But I will be at Norton Suburban Hospital here in Louisville. And if you want to check up on my you're welcome to call my mom. Hopefully I will be in the hospital for two days or so, but it may be a few days before I am able to (or feel like) answering my own phone.Send me good vibes.

Love you all.

xoMRC

One Month, Two Days. Stage One.

And voila! Now you see them, now you don't.

It's been eleven days since the surgery and while I am still in a great deal of pain sometimes and my range of motion remains limited, I am pretty much back on my feet. I have a lot to catch you up on (although, thus far, no one has read this blog), so that will take some time.

The short story is this. The surgery was nothing like I thought it would be. I think that's thanks at least in part to the fact that I was so medicated by the time they prepped me for surgery that Hunter S. Thompson would have been proud.

If you remember, my greatest fear was the anesthesia. I must have mentioned that to someone at some point because I have zero recollection of being put under. None. Total blackout. I have little recollection of much after the nurse gave me what she called a "martini" (or two or three-- I seem to remember her adding more and more to my iv). And I have little to no recollection of waking up from the surgery. I just tonight found out that I pitched a fit with my patient navigator about not having my glasses. Long story which I'll try to fill in later. Seriously, the fam dropped the ball on that one.

The other big fear was the fact that I would wake up and get The News. Again, I don't remember much of this except not being able to articulate the question when I awoke. But in the end the answer was ringingly positive. The sentinal node tested clear. The cancer had not spread.

And the first couple of days-- the hospital/morphine days-- were way better than I thought they would be. Despite the fact that I barely slept in the hospital, everything else seemed really hunky dory. It might have been the dope. It might have been the euphoria of the good news when I had anticipated bad news. But I seriously felt as though recovery was going to be a piece of cake. My range of motion seemed good. I was reasonably comfortable (drugs).

It wasn't until I got home that things went to shit. I became stiff and every movement became an effort. I couldn't switch positions without help (you don't realize how dependant you are on your arms when it comes to leverage). I could only sleep, as though in a coffin, on my back, arms propped up, unmoving. I woke every four hours, max. I was peeing constantly and never pooping-- the constipation got so bad that on Sunday after the surgery, I OD-ed on laxitives and suffered the gut mangling consequences for two days. Every inch of my body hurt-- what didn't hurt from the surgery hurt from the awkward and unnatural positions in which I had to sit and lie.

By the sixth day after the surgery (thankfully, the day I had my first post-op dr's appointment), I was a weepy, angry, despondent mess. It seemed as though nothing was getting better, especially when I would wake up in the morning a mess of aches, painkillers worn off, still exhausted. After the highs in the hospital, the unanticipated depths of the lows when I went home made me feel as though something had to have gone terribly wrong.

And of course, the doctor said that everything looked as good as it should look. I was healing beautiful. The pain was to be expected. I might consider amping up the painkillers. Otherwise, I was just plain ol' being impatient.

More good news from the doctor. There was no cancer in the right breast. The tumor in the left breast was 1.7cm, and that's .3cm smaller than they thought it was from the ultrasound. The final analysis of the sentinal node says that it was, indeed, 100% clear (Megan-- the cancer survivor I met just before my surgery-- had her sentinal node test clear during her surgery and then unclear in the final analysis-- horrors).

And so all of this means that the girls and I were Stage One. We caught it early. All those piles of bad thoughts pre-surgery were just wrong. All that dread that I felt about my rock star lifestyle-- the heavy drinking, the more than 15 years of smoking, the lack of exercise, the taking of my body for granted-- all that certainty that this was PAYBACK-- well, it just goes to show you that I am one hell of a lucky S.O.B., now doesn't it?

I guess saying that I "dodged the bullet" is a bit like the broadcasters saying that New Orleans "dodged the bullet" after Katrina. Sure, NOLA DIDN'T get hit by the Big One. The Big One would have wiped out the whole city. But it was still devestation in grand scale. And I mean, Stage One is kind of a blessing in the larger scheme of things. But... it's still cancer. And I still lost the girls.

Day 20: Ups & Downs

Good day/ Bad day.

It's clockwork, folks. I can only hope that that doesn't mean tomorrow will be a bad day.

Got a phone call tonight after 9pm from Mom. Hysterical. Hyperventilaing. Her plane missed the connection in Cleveland and she's stuck there for the night.

Immediately my spidey-sense care-for-others thing kicks in, and I cry with her on the phone but I also realize that it's more about her than about me.

Still, that news coupled with the fact that my dryer decided to break down today in the middle of drying the sheets I bought for her bed...

I don't mean to be melodramatic, but still. Two pieces of frustrating and bad news in three hours?

Day 18: the Perils of too much Alone Time

Overall, today has been a pretty good day. Yesterday was not so good. (I just gave the blog the once-over and realized that I'd added the tag "fears" to an early post. Yeesh, like EVERY post isn't about my fears).

Yesterday was my appointment with Glamour Shots. Probably, in the end, an enormous waste of money (what a racket that is! I had a coupon but still dropped some serious cash to order three 8X10's. Normally each photo you order is $60). The women there were very sympathetic and did seem to "hear" me when I stressed that the photos should "look like me, only better." I did engage in some serious eye-rolling when they whipped out the rose petals and sunglasses. But in the end, the hair and makeup person did a great job, and I found three nice pictures out of the several dozen that they took. The photo service will "glamourize" the photos with some serious airbrushing, but I couldn't get over the fact that even all made-up and gorgeous, I looked tired and old.

And if I hadn't been in a funk up til that point (and I was already calf-deep in the funk), that certainly sent me on a spiral downward.

I didn't really recover until this morning, and even then I don't know what put me back in a saner frame of mind. I guess being productive helps (I tend to make things a zillion times worse when I am blue by becoming a lazy lard-ass and then feeling even worse about myself for being such a slug). I graded around 30 papers this morning, probably more generously than normal. Then I headed out to the Kentucky Flea Market, which was, in the end, a fun goofy time. Swung by Borders and picked up a gift for a departing colleague and Lowes for some paint. Then passed by the house, picked up some cds that I'd loaded onto the iPod and brought them to Half-Priced Books, where I traded them for $20 and five bargain hardcover mysteries.

Then back to Quills. And here I am.

In retrospect, I didn't really get much of substance done today, but at least it kept me out of my own brain for most of the day.

There's a lesson to be learned here. Something about "it doesn't matter how much you think about shit... yadda yadda." Or something about "idle hands... yadda yadda." Mostly, "don't give into the dark side." Or something like that. Because let me tell you, I've been leasing to own in the dark side for the past eighteen days. And that ain't good.

It's also been very not good for me to be alone all this time. I swore up and down to Jason and to Ma that I would be A-OK for six days on my own. Not entirely true. Not entirely untrue either. I just should have been more proactive about finding someone to have fun with this weekend, rather than wallow 24/7 da solo.

Breast Cancer in SATC

I'm not sure I can figure out how to embed a video, but I was reminded today that Samantha from Sex in the City had breast cancer during the last season. There's a very sweet YouTube clip of the episode where she shaves her head. I'm hardly the Samantha type, but it's cute.

Day 16: Have I really been living with this for 16 days??

So, yesterday I went to see the new Indiana Jones picture with around 15 of my students. And how can you not hear that theme music and want to apply it to every aspect of your life? It's just so frigging victorious sounding. I need to download the themesong onto my iPod and have my mom play it over and over when I get out of surgery. Thank goodness that movie has some serious Girl Power in the person of the adorable and sassy Karen Allen. Did my heart good.

Otherwise, it's been a rough few days. It's just not getting any better and it's probably not going to get any better for a while. Ups and downs. Today my biopsy site began to hurt so bad that I called the doctor to make sure it was normal (it is). Way to have a delayed reaction, body! It's more psychologically painful than it is physically painful. It sucks to walk around with your breast hurting. And I swear the lump is getting bigger. I doubt it is, but it sure feels like it. I don't have to grope around anymore to find it; I can just hone in like a missile.

Today was the last day of school and the last day of work for me. Both a blessing and a curse. As much as I don't feel particularly connected to the school in the way that I was to my school in New Orleans, it's hard to be exacting myself from the community at a time like this. Knowing that after tonight (an end of the year party), I'm pretty much alone.

Much has been said about people wanting to visit and bring me food and whatnot. It's so nice that people even think that way, but I'm a terrible cynic. I gave everyone Ma's phone number and let them know that she'd be my PR agent for the first week or so.

I have been in touch via email with two young women who are breast cancer survivors and we're trying to hook up for lunch or coffee on Tuesday. I am totally looking forward to meeting them. It will be so nice to have that perspective.

I've also done something potentially very weird. I've made an appointment tomorrow at Glamour Shots to have a portrait done. Is that morbid and gross? I just haven't had a nice picture of me taken since my wedding, really (that was 9 years ago). I just want to have a record of the "now" me. A good one. Maybe not morbid and gross. Maybe just corny and naive.

One of the "nice" things about all of this is that it has put me back in closer touch with some long lost friends. And speaking of corny, but sometimes old friends really are the best. Got a great response from one of my college roommates saying, "This may be weird to say, but you're going to be GORGEOUS bald with your big Sinead [O'Conner] eyes!" That email may have been the highlight of my day.

Alone now

So Jas left today. I took the day off and we both overslept til 1230pm. I panicked but more than made my appt at the hospital for pre-op tests and counseling.

Bless his heart, Jason stuck around long enough to help me finish painting the living room. He'd hoped to hit the road around 1 or 2 pm, but he ended up leaving around 7pm.

The parting was painful on my part-- perhaps on both of our parts.

I don't want to go through this without him. But I have to. Again, I don't want to talk about it right now.

What constitutes a meltdown, anyway?

When I went to the polls today to cast my vote for Obama, I was surprised to find John Edwards still on the ballot. Gosh, a long time ago-- nearly a year, almost-- I went to see his wife speak in Lexington. She moved me to tears countless times, most of all when she spoke of her breast cancer and of the need for this country to declare "war against cancer." Cancer is curable, she said, as long as we throw enough money into research. If we just saw cancer in the same light that we saw terrorism-- as an enemy, as a threat to the world-- that we would find a way to conquer it.

Today was a grim day in the world of politics and cancer. As a former New Englander from a family that's been New Englanders since they arrived in this country, I am a card-carrying member of the Kennedy Fan Club. And dear old Ted was diagnosed as having a (so says the media) an inoperable malignant brain tumor today. Be well, sir.

Also today, President Carter's chief of staff, Hamilton Jordan, succumbed to a twenty year battle with cancer during which he endured more than three different types of cancer.

My Obama vote didn't do much good. Part of me wishes I'd just voted for Edwards. But I'll keep the faith.

I'm a political junkie, so presidential politics have been on my brain since the candidates first stepped onto the playing field (seemingly years ago). But since my diagnosis, I have to admit that my thoughts have taken a more fatalistic turn. When imagining worst case scenarios for myself, I find myself musing about how willing I would be to fight to live if we ended up facing four more years of a Republican president. Mawkish, perhaps. But I do go there.

It's been a relatively lousy couple of days. I'm not really sure what counts as "meltdowns." Did the fact that yesterday I couldn't get a dentist appointment, got off the phone, and bawled count as a meltdown? It was only tangentally related-- I feel like anything I can do to be "clean" when I have surgery will help me fight against the possibility of infection.

Does the fact that I'm already having (minor right now) insurance woes and cried because I got frustrated with that count as a meltdown?

I guess the biggest news right now is that, unbidden, my uncle/godfather is coming down from Massachussetts for my surgery. I was not consulted. I still haven't been consulted. My aunt called my mother and told her that my uncle had made a reservation.

I am weirded out, and perhaps weirded out most because there's a weird (that word again) little quirk in me that feels somehow like this is an honor. I'm not close to him, although I consider him-- now that I have lost both of my grandfathers-- in a fatherly sort of way. He is my father's eldest surviving brother, and when Dad was alive, they were best friends. Went to college together, played hockey together, pledged the same frat. He has three (gorgeous, perfect) daughters of his own. He's also a very important businessman whose family bemoans the fact that he works too much. It's hard to imagine him asking for time off (does he even have to ask?) to be with his niece during her mastectomy.

My mother thought I would be upset at the news that he was coming because of my neurotic need for privacy. But I never even thought to be upset. I'm happy for her; she shouldn't have to be alone during this. And, I guess I see this as his tremendously generous effort to be my father's surrogate during this difficult time.

These past few days when things have felt very dark, I've become worried about my ability to cope with the aftermath of this. But I don't think I want to talk about it right now.

Today I purchased two post-op mastectomy camisoles meant to comfortably hold my drains (the word makes me want to hurl) and replace, I suppose, my psychological need for a bra. They both also include little breast pillows to tuck into the shelf bra, so I can approximate a figure after my surgery.

Speaking of which, last night, for the first time, I dreamt about it. I dreamed that I had the operation and was leaving the hospital and it didn't hurt and I already had tiny little breasts. Generous A-cups maybe. I put my hands over my breasts, and they were hard, but they were breasts. And I thought, what's the point of doing any more reconstruction? I can live with these. Overall, a good dream.

I'm working on a handbook, mostly for my mother, with the nuts and bolts of directions to local grocery stores and passwords for my home wifi. But I'm also including a list of desires. Things like: "At least for a while following the operation, I hope to approximate a very healthy diet. I expect my sedentary recovery will negatively impact my weight. Without the blessing of my ample bosoms to offset the rest of my voluptuous figure, I expect that I might appear a bit chunky after surgery. I'd like to lose weight if anything."

Day 11: Weekend Musings

So, Ma is coming on May 27. We talked on Friday when I heard about the surgery. I told her that she should plan on staying a week. She said, "No, ten days." I said, "Please make sure you make a reservation on Southwest or something you can change. You have to understand that I will only start feeling good when I can take care of myself." And we, I thought, left it at that.

She emailed me her flight plan this morning and she reserved for 14 days. Again, trying very hard to balance her needs and my needs. I thought 10 days was a fair balance. What do I say now?

The public-ness of my cancer is getting a little exhausting. Colleagues I don't even know ask me about my surgery. I'm getting emails from parents of students I've never taught. I'm grateful. Really. I don't want to sound like a shit who's worn out by all her well-wishers. It's just contrary to my nature. I have a well-earned reputation among my friends and family as being a person who hibernates when things in my life turn ugly.

I have no doubt that I have actually lost friends because of my solitary nature. Certainly during my divorce I turned away nearly every offer of help and solace that I was offered. I was embarrassed. (And believe me, that's a story for a whole 'nother blog) And that kind of pain is pain I would much, much rather sit on and let hatch into whatever ugly thing it was going to turn into.

But I find myself having to re-wire my brain to handle this.

There's a lot of re-wiring going on.

As I worked on "coming down" from my prom meltdown, I realized that I had only just begun to think of the larger, long term consequences of even a best-case scenario. Best case scenario being that I have the mastectomy, they test my lymph nodes and discover that it hasn't spread, and by some good grace they also decide to forgo chemo and radiation. Breasts gone, but otherwise only the reconstruction process to face. (Let's all pause for a moment to give a little cheer for best case scenarios)

Best case scenario, I'll never breastfeed a child. Okay. I can handle that. Truth be told, I've always been weired out by the idea of breastfeeding. Still, though, we all know now that breastfeeding is the way to go. Any future child of mine will not have the many advantages that breastfeeding offers. I wasn't breastfed.

Best case scenario, I'll never have sex with the girls again. In fact, I'll never find sexual pleasure from my breasts again. I'm still processing this. This, to me, seems like the best case scenario's greatest tragedy. And, I have a feeling, that as I lie in my hospital bed waiting for the surgery, I expect that this will be one of the things most on my mind. Truth be told, this thought has all the makings of Meltdown #2. I'm just not there yet. It's still just a ghost in the periphery.

But let's put that thought aside for now.

So, Jason leaves town on Wednesday. That means a whole week almost of me alone with the girls and my thoughts. He pressed me to have my mother come early (and in retrospect, if I'd pushed for that, maybe I wouldn't be looking at 12 days post-surgery with Ma). He said, "You may not realize it, but I've been subtly trying to keep you busy." I had realized it. This is his busiest time of year and yet he's been pushing for outings and projects. Today we repainted the front porch; and while the porch needed repainting, it's way low on the list of things we need to do around the humble abode.

Impending hospitalization and knowledge that it could be a month before I'm able to really "work" again is a good kick in the keister insofar as getting stuff done is concerned. This weekend not only did we repaint the porch floor and the front door, we planted my vegetable garden, weeded extensively; I cleaned out my car and got him a new battery. I've been better about cleaning up after myself and doing laundry and dishes.

I worry about keeping myself occupied during my recovery. Even when I go to bed at night, I dwell on the fact that I sleep best on my stomach or my side and that will be impossible for a while. Will I be able to hold a book? All I want to do is read. The crazy geek that I am, I thought that this might be a perfect time to learn a new language, and my first thought was that I've always wanted to learn sign language, but will it hurt too much to use my hands and arms in that way? I'm a huge TV fan, but recently our sattelite has decided that it can't "see" over a tree that grew gigantic during the spring. No local networks for us now. So I figure I can rent seasons of TV shows that I've missed, but what's really worth watching? So far all I've decided upon is Battlestar Galactica.

It's nice to dwell on minutia like that every once in a while. Better than thinking about sex without my breasts or whether or not chemo will fuck with my already questionable fertility. Or facing surgery without Jason to hold my hand. Or whether or not the fact that I've had weird cramps in my gut is a sign that the cancer has spread. Or that one in ten women have to have their breast expanders removed and reconstruction postponed because of infection. Or that I will most definitely not be able to use my ticket to Bonnaroo this year. Or that in the heat of June, I'll have to wear clothing that conceals the drain bulbs from my surgery. Or that I will not be able to weed and care for the garden of tomatos and peppers and peas that I just planted. Or that I will not be well enough to be able to use the $2300 grant that I received from my school this year. Or that I may have to have chemo and will lose the hair it took me three years to grow and that I may have a funny-looking head and will not be able to pull of the Sinead O'Connor badass cool look that I like to pretend I'll be able to pull off. I don't want to wear a wig. I want to be bald and beautiful if I have to. That's a big issue for me.

Sigh. Great thought process to have before I go to bed.

Meltdown #1

Meltdown #1: Formalwear Freakout

Severity: Relatively minor (in the grand scheme of things, I imagine they could get much, much worse)

Circumstance: Getting ready to chaperone the school prom

Narrative: Last night was the school prom. One bitch of being scheduled for surgery in a couple of weeks, rather than next week as I had hoped, is that I don't really have any excuse to get out of some of the more tedious end-of-the-year hoopla at school. I could, I'm sure, whip out the Cancer Card, activate my doe eyes, and plead stress and chaos. But that's just not my style. (Tempting, oh yes tempting, though it is).

7:30pm rolled around to find me in my underwear, in my bedroom, surrounded by a pile of dresses like shed snakeskins. Jason passed by the door and peered in. "Whatcha doin', Boog?"

I can't remember what I said. Something snippy. I put on another dress, looked at myself in the mirror and stripped it off again. (Jason is my roommate, my best friend, but he was my boyfriend for many years; modesty is not an issue.)

"You seem upset," he said. I agreed. He asked why, and I asked him if he really wanted to know.

A little side note here: next to my mother, there is no one closer to me than Jason. In some ways, Jason knows me-- the current, 34 year old me-- better than even my mother. Next week, we will have known each other for six years now. Next month, we will have lived together for five years. He's been through my divorce (long-distance), our miscarriage, Katrina, the death of my grandmother, the uprooting from New Orleans... and now this.

But this is different. This is the first crisis we've faced together since we've been decidedly broken up (although, in spirit, we were broken up during Katrina, my grandmother's death, and our move). At my appointment with the surgeon, when the doctor asked us if we were dating, I said "he's my ex, but we're still best friends." Jason ammended it by saing, "But I'm really her Louisville family."

Anyway, I just thought I'd clear that up. I'm sure it only muddies the waters. The point is, I guess, that Jason has the dubious distinction of bearing the brunt of all of this. And sometimes I feel like I should swallow more than I do; I always strive to give him the choice of hearing the raw truth. And almost always, he wants to hear it. He's been the one all along who's been mad at me when I get mad at myself for being sad.

So, I said, "Do you really want to know the truth?" He said, "Of course."

And I started to cry. "I realize now that this will probably be the last time I dress up with my own boobs."

And Jason, bless his heart, stood in the doorway agape as I threw on the most modest dress I owned, and pushed past him toward the bathroom. I dried my wet hair in the bathroom, sobbing.

We never talked about it again. And by the time my hair (my long hair, hair I may sacrifice to chemo, hair that's longer now than it has been since I was a child) was dry, I'd gathered myself enough to put on makeup and finish my pre-prom ablutions. I do know, however, that he didn't leave my room for a good five minutes after I'd brushed by him.

The folks at Gilda's Club operate under the assumption that when someone has cancer, then everyone around them is sick too. Yes, of course.

Myself Together Again

So far, this has been the best resource I have found for understanding what will happen to me. This is, perhaps, a worse case scenario-- this woman had to delay reconstruction and undergo chemo. Right now, it looks like everything will happen for me at the same time. Chemo is still an unknown.

I found out today that my surgery will be on the 29th. 13 days and counting...

Email Update #2

Hi all,

Sorry, I know I told a lot of you that I would get back to you on Wednesday. I thought I'd have concrete info on Wednesday, but it took until today for them to schedule my surgery. Surgery is May 29, and we're looking at a bilateral mastectomy with simultanious reconstruction. I won't know about chemo or radiation or what stage it is or whether it has spread or... any of the really juicy stuff until after the surgery. All I know right now is that the girls have to go.

My plastic surgeon is a total dream; I couldn't have asked for a better match for my personality. Can you imagine how much it would suck to have a plastic surgeon like Dr. Spock or Doc on the Love Boat or Dr. Phil? I was seriously expecting to have to shop around for a surgeon who wasn't creepy or old or leery. Blech. But Dr. Thornton is cute (really cute) and very funny; it's almost easy to forget that he's rich and successful because women (and some men) are insecure about their bodies. (turns out insurance companies pay drs, like, practically nothing to reconstruct breasts, but a cosmetic boob job costs $8K at least... so much injustice!)

But the meeting itself, the idea of the process? Whoa. It's gross and complicated and I won't look like I want to look for more than a year. Probably more like 18 months. Wow. And it's TWO surgeries to rebuild the girls-- one to put in the expanders and one a few months later to put in the actual inplants.

I hate blood. I hate hospitals. I hate knives and needles. I am seriously, seriously squeamish. And the one and only time I've ever been under anethesia, I nearly had a heart attack anticipating it. They had to sedate me before anethestizing me. When the dude told me to "count backwards from ten," I said, "NO!" I know this sounds very weird but the thing I'm scared most of right now-- having to be under anesthesia TWICE!! Weird huh? I'm horrified by the idea.

Anyway, I'll send a better update later. It's Friday. Time to play.

Okay, Mastectomy Fun Poll of the Day: If YOU had only two weeks left with your boobs, what would you do with them? :)

(Uh, Bernard... you can improvise!)

Thanks again for all your love and support!!

xo
MRC

In the News

OMG, seriously? Another story? Story #5 of the week, #3 of the day:

More Cancer Patients Choosing Mastectomies: "In the Mayo Clinic study, about 45 percent of breast cancer patients chose mastectomies in 1997. That declined to only 30 percent in 2003, then started to rise. By 2006, 43 percent were opting for the more radical treatment. The rise coincided with wider use in the clinic of MRI, or magnetic resonance imaging. Studies show it can detect far more breast abnormalities than ordinary mammograms but it also gives a lot of false alarms."

I was advised not to bother with the MRI-- it would just turn up more "clutter."

Enough already, MSNBC! Give me more stories about Ellen DeGeneres & Portia de Rossi's upcoming nuptuals or the split between Kate and Owen and/or Tony and Jessica!

Kidding. But still...

In the News

Obviously, when you're keyed into something, you suddenly "see" it everywhere. I'm not looking for breast cancer news; I'm not Googling it. I'm just reading MSNBC.com as usual, and here's the fourth article this week and second one today:

Drug Combo May Help Breast Cancer Patients: "A combination of two new-generation cancer drugs modestly delayed the time it took for cancer to worsen in a study of 300 women with very advanced disease who had stopped responding to other treatments. It was the first test of these two highly targeted drugs, Herceptin and Tykerb. Both aim at a protein called HER-2/neu that is made in abnormally large quantities in about one-fourth of all breast cancers. Herceptin blocks the protein on the cell's surface; Tykerb does it inside the cell."

It's enough to make you wonder whether or not someone at MSNBC is living with breast cancer or with living around breast cancer.