Friday, June 27, 2008

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,

Thursday, June 26, 2008

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!!! 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,

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.


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.


Monday, June 9, 2008

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.