So, when Dr. Radiation told me that he was going to tack three "boosts" onto the end of my treatment, I just assumed that this was equal to three extra treatments, as in three extra days.
Wrong. Instead of this Wednesday (2/6) being my last day they're telling me it's going to be Friday instead (2/8). Not a huge deal, just as long as they don't keep stringing me along...
The waiting rooms of radiotherapy (aka the nukey dungeon), gyn onc, and the general oncology department have free drinks and snacks. They like us with a little meat on our bones.
Sometimes, when I'm helping myself to a piece of zucchini bread, I wonder if my cancer brethren/sistrethren are thinking that I'm an interloper just looking for free food as opposed to a fellow cancer cog. I think part of me still thinks of myself as not belonging to the club. Denial has its uses.
Just to be clear: I do not subscribe to the misguided thought that "cancer is a gift" or the adage that "everything happens for a reason." Those platitudes are the worst kind of smoke that one could blow up my diseased ass. Fortunately, the vast majority of the people in my life know better than to say that crap to my face.
I will stoop to the exercise of taking stock, looking for the silver lining, and all that sugar-coated nonsense. My current list includes:
SNL was a rerun this past weekend, but I nearly fell off the couch watching this:
No one will ever use the word "sophisticated" to describe my sense of humor.
Jovi PS: "Livin' on a Prayer" came on the radio during my treatment today. I don't think I've ever been so happy while getting an ass full of gamma rays (or whatever it is they shoot me with). Apparently, Bon Jovi is indeed good medicine!
We are making progress...My surgery date has been set for Friday, March 28th!
Stay tuned for information on "Final Countdown: The Weekend" to take place in Chicago, IL.
New poll! Giving a nod to one of my top 10 desert island movies, Fight Club, what is my power animal?
New velvet slipcovers + frigid/dry weather + a nervous dog that has to pace and turn around a dozen times before settling in = something like this (video--fwd to 2:29).
Since moving to Madison, I've been asked on a number of occasions what I like to do for fun, in my spare time, etc., and have been embarrassingly stumped by this question.
I spend a good amount of time watching crap TV, surfing the Internets, and occasionally reading, but those hardly count as hobbies. I used to like to go running, until I got all preggo and had a baby that was way too wee too put into a jogging stroller. And now? Jesus, it's pretty much shower and sleep.
But I had a bit of an epiphany while watching the L.A. episode of Anthony Bourdain's No Reservations--roller derby.
Those bitches are hard core, punk as hell, and get to release their aggression by beating the crap out of each other. I could totally justify additional tattoos, piercings, and funky hair colors if I joined the local derby, the Mad Rollin' Dolls.
One teeny, tiny issue, tho: I don't know how to skate, roller or otherwise. And I'm way too old to start tearing ligaments and wrenching knees. Yeah, I'm not that tuf after all.
My intolerance for this kind of weather.
My stifling cold.
My (or should I say, our) sleep deprivation.
My treatment.
My stupid fucking cancer.
I feel like all the juice has been squeezed out of me and only shredded pulp remains.
Not to get to deep into specifics, but I just had a good 10 minute crying freakout because my body is not behaving the way it's supposed to.
Two and a half more weeks. Grind it out.
I know there are many of you that want to do something to help, but living so far away, you feel powerless to do anything of significance.
This is where I get on my Red Cross soapbox to say: Give Blood.
I've been donating blood since the moment I could--I think my first time was within a few weeks of my 17th birthday--and barring a few interruptions (one piercing, one tattoo, one pregnancy, and pretty much all of college where I was always thisclose to getting bronchitis), I've been donating pretty steadily since.
Fortunately, it looks like I'll be able to donate again five years from sometime this fall, but in the meantime, maybe y'all could pick up my slack? I promise to get pierced or tattooed sometime in the interim so as not to waste those five years... ;)
Our wee one turned 6 months old yesterday. Since I have little need to know the date these days (and the fact that I've never been very good at remembering anyhow), that fact didn't dawn on me until just this second.
I have to resist the urge to curse myself for being a bad mom and not having sent our digicam to be fixed. I'll shoot for that to be the goal for Little Miss' next nap.
It was so cold this morning...
("How cold was it?")
...that my car door wouldn't latch shut and I had to drive my stick-shift car to treatment holding the door closed the whole way.
Fortunately, it had rectified itself by the time I had to drive home.
Just another day in Southern Canada.
Cheesehead PS: Go Pack!
Babies and laughter are great medicine, but the best? By a vote of 8 to 7s, you guys think that Guinness is the best medicine, and I could not agree more. Now if only Whole Paycheck would keep those cold cans of stouty goodness in stock, I could take my medicine!
This latest poll came out of my realization that emotions/sayings which are corny and clichéd might just be feelings/situations that we haven't experienced yet.
For instance, the saying "laughter is the best medicine" always sounded like some weak platitude said by those who had no power over a situation. I've recently come to rethink that position.
While of course context is everything (see the last lines of the post on 1.15), I do think that occasionally making light of my situation is just as important as the chemo and radiation, as though you're taking the tumor's power away from it by laughing in its face. "You think you're tough? I eat pieces of shit like you for breakfast!"
And then the tumor says "You eat shit for breakfast?" and I'm all "Ah, an Adam Sandler fan, huh?" and he's all "I LOVE Happy Gilmore!" and then I pull him out, beat him with a five iron, and feed him to that damn one-eyed alligator.
I really need to *not* post to ye olde blog when I am through-the-wringer exhausted. It makes for some Debbie Downer reading.
Fortunately, Sailor Jody took baby duty last night, so I am rested and in much better spirits.
Tally-ho!
Well, I was all ready to lament about the lack of information out there on cancer etiquette, but as it turns out someone did indeed write a book, so I guess that's one to add to the library request list.
Still, I'm glad to see that there is a resource out there for people who love people with cancer, but what about those of us on the other side of the tumor? While you generally know what's expected of you in those social events that are common but happen relatively infrequently (wedding, birth of child, funeral, etc.), what the hell am I supposed to be doing now, besides going through treatment like a good little cancer cog?
For instance, friends and relatives have been incredibly generous, sending all manner of gifts to lift my spirits and let me know that they're thinking of me. I'm pretty sure I know who would be satisfied with a simple e-mail thank you, but what about those folks from the older generation? Are they expecting thank you notes for their care packages? Or would sending a note make them feel guilty somehow? Of course, the longer I stew the longer I don't send anything--snail or electronic--guaranteeing that I'm committing a faux pas regardless...
As for the cancer faux pas I've experienced thus far, I do kinda cringe at anyone making a comment about my appearance or weight, but then I've always been sensitive about people telling me I look tired. Now I get "you look pale" on top of that. Um, I'm an Irish lass living in dead-of-winter Wisconsin. Any white person that isn't pale this time of year will probably have the complexion of a catcher's mitt in 20 years.
But yeah, I know--I look like shit these days. A 6 month old with a cold will do that to a person, never mind the cancer.
As for the weight thing (and shout out to you know who--I'm not mad, I swear)...it's weird. I mean, as a woman just coming off of a pregnancy, it's hard to not feel good about fitting into my skinny pants again, even though I know the reason why is pretty much the furthest thing from any die-hard dedication to some grueling aerobic training regimen.
Then there was the nurse that weighed me the other day before my appointment with Dr. Ovaries. Once the scale equalized, I started to get off, but then the nurse hit a button to record my weight in kilos, and I must have made some air-sucking noise, as in "Oops! Hope I didn't fudge that up for ya."
She must have interpreted the sound as "Ooh, guess I had too much nog and fruitcake over the holidays!" as in I was a little surprised to see the weight so high, because she replied with "Oh, that's probably just because you have your shoes on..." The thing of it is, that weight was on the low side for me, especially with shoes. So, my take away is she thought my weight was high. And I know it was low [for me]. Which apparently isn't low enough...or something.
All that being said, here's a suggestion for those of you who see people with cancer in your day-to-day: If you feel compelled to say something nice, compliment them on their coat/purse/shoes. Otherwise, ask them how they're feeling without chasing their response with "Yeah, you look tired..." Because that only makes us feel even more tired.
I watched Holly's (as in Hope For Holly) head shaving party video for the first time today and holy SHIT did it make me cry...but she had some really great anecdotes about living with cancer, one of which really hit home for me.
She said that, on her good days, she would sometimes get a taste of what it was like to feel good again--without the pain and the nausea and the fatigue--and forget about her cancer for a little while. And her advice for those people with loved ones in a staring contest with cancer was to not give them the "sad eyes," because--while you are undoubtedly trying to put your most compassionate foot forward--you might be catching them in one of those blissfully forgetful moments and wind up snatching them out of that fleeting normalcy, reminding them that they are, in fact, sick.
And this is where I'm a total fucking hypocrite. This blog is all about my cancer. You come to this website to check up on me, to see how I'm feeling because/in spite of my illness. We are all here because I have a goddamn tumor in my ass that could end me.
Ah, I clearly want to eat my cake and have it, too. To paraphrase a junkie nut-job, I want to be the girl with the most cake. And I pray that someday you won't ache like I ache.
Addendum: The worst cancer faux pas I've experienced thusfar? An [apparently sober] New Year's Eve email from someone I thought was a friend that only said "Aren't you dead yet?"
This isn't some oddly-shaped mole I'm having removed, asshole. I'm not dead, but our relationship clearly is.
How bad is radiation? Knock wood, but so far, on the precipice of the halfway mark, not so bad.
Every work-a-day morning around 9a, I make the 15 minute drive to UW hospital. Upon my arrival to the parking ramp, I beat my fists against the steering wheel as I wait for Ms. Indecisive and Mr. If-I-Drive-Slowly-A-Spot-Might-Open-Up to get the hell outta my way so I can get to the upper decks (what's another flight of stairs? I should be exercising, anyhow) and grab a parking space.
Then I wind my way down the stairs, across the drive, and into the hospital, at which point I shoot passive-agressive daggers at the folks at Registration because they ask too many damn questions before validating your parking ticket. "All you need to know is that I have an appointment, jerk. Don't make me scream HIPPA!"
Through the cancer admin offices, down two separate flights of stairs, and I'm finally in the radiotherapy dungeon. I'm guessing they hide us away in the basement so as to minimize the risk of zapping the non-cancerated patients.
I give the rad techs--I mean radiation therapists--a wave, and they usually bring me right into the treatment room. Sometimes they make me step on the scale beforehand...yesterday they told me I dropped 5lbs in a week, but it's because I had a coat on the time before. Might want to be consistent about that, folks.
Once in the treatment room, I hop up on the table, kneel at the bottom of my belly board, and drop my drawers while lying down as quickly as possible so as not to flash my lady business to God and everyone.
Of course, my ass is still hanging out for all to see, but that's because the techs have to line my itty bitty tattoos with the marks on the board and levels and all sorts of other measuring techniques that I can't see in addition to their touching up various pen marks which serve the same purpose.
The machine that kinda revolves around the table is a linac. I really don't know the specifics of what it does, but it nukes me from three different [precisely calibrated] angles for a few seconds a piece and sounds like a cross between "zzzzzzzz" and "EEEEEEEE!" when it does. The techs are in a different room when this is going on, but they come in between zaps to fiddle with the machine. Again, not exactly sure what they're doing.
The nuking doesn't hurt at all...well, not yet, anyhow. The nasty side effect I've yet to experience is skin burns and irritation. I've heard it compared to a bad sunburn, the difference being that instead of slathering yourself with aloe, you are forced to keep sitting in the sun until treatment is over. More manageable side effects I have had are fatigue and the all-too-familiar trots. Oh yeah, and let's not forget the whole possible egg scrambling/definite uterus scarring effect of it all. Gah.
Like the chemo, the effects of radiation are cumulative, so while I might feel pretty good now, I could conceivably feel like complete crap even two weeks after treatment is over.
That's my radiation story for ya...Now, can anyone cite the source of this post's title?
15 down, 18 to go--Just what exactly is my weekdaily routine of chemo like?
Just to clarify, the chemo I'm on right now isn't the stuff that knocks people on their ass, makes their hair fall out, etc. That's the chemo of the IV variety, which I still get to look forward to.
I am taking three 500mg pills of Xeloda twice a day, for a total of 3,000mg of the stuff per day (I do math good). Apparently, some people take this at higher doses, but my dose is appropriate for what it's meant to do (more on this in a sec).
It is absolutely critical that this stuff is taken with meals--I made the mistake of taking it whenever the hell I felt like it the first week and managed to reproduce the feeling if 1st trimester morning sickness: I would open the fridge/pantry and nothing would look good to me. I probably dropped 5lbs before I figured out what I was doing wrong.
I only take these meds on weekdays, ie the days I have radiation therapy. The point of the Xeloda (aka Capecitabine) is to make the radiation work better, and the point of that is to shrink the tumor as small as possible prior to surgery (the date of which has yet to be set).
Possible side effects of the chemo include hand/foot syndrome (numbness, tingling, pain, redness, or blistering of the palms of the hands and soles of the feet), mouth sores, and the trots. Fortunately, I've only yet to experience the least severe of these, which is annoying but doesn't really prevent me from leading a normal life.
I know it's not a very exciting story, but I'm kinda glad that I get to warm up to the gamut of my treatments a little slowly... If I had to plunge headlong into major surgery, an ostomy, and IV chemo, I would probably get psychological whiplash.
Next time: Dropping my pants in mixed company.
I met with Dr. Ovaries yesterday and he basically said that my abdominal incisions were healing well and repeated the rundown of symptoms to be aware of that would either indicate my going through early menopause (goody) and/or necessitate my going on birth control to mediate any cyclical pain due to follicular cysts rupturing when an egg is released in their new location.
He also said that there is a way of evaluating my uterus on the odd chance that I would be able to carry a child again...apparently there are only two documented cases of women coming out of pelvic radiation treatment with viable wombs.
Third time's the charm, right? ;)
Sorry for the gloom, gentle readers--sometimes the BS/CA gets a little overwhelming.
But enough of that nonsense!
Here's a little something to help you put on a happy face: VTV, aka Violet Television. We started Little Miss on solids on 1/1...so far we're up to carrots, with sweet potatoes and squash on deck. Let's hope all that beta carotene doesn't turn our wee one orange.
Back in Seattle, my roommates and I would often play the non-drinking game of Would You Rather, as in "Would you rather have pronounced body hair or really bad BO?" It was almost as much an exercise in thinking up more and more absurd but similarly undesirable situations as it was trying to decide which scenario was worse.
Last night, as I was falling asleep, I found myself playing an accidental game of Would You Rather: what would I rather have instead of cancer--lifetime paralysis below the waist? Being in a coma for a year? Serving a two year prison term?
Would I trade my mobility, a year of seeing my daughter grow up, two years of my freedom for the guarantee of a long life? I didn't have the answers then and I still don't.
Today, Dr. Chemo remarked that I seemed a lot calmer since the last time he saw me. That is somewhat true--I have managed to digest and come to terms with my situation a bit more--but when I make the mistake of stopping and really thinking about what a cancer diagnosis can mean, I still get the cold, sucking feeling of the ground opening up beneath me, threatening to swallow me whole.
Some random notes...
One: Last night was the first in probably a month that I've had to take baby duty (I know you aren't reading, but thanks, Mom!). I am thrilled to report that Little Miss only woke up twice and went back down very, very easily.
The first waking was @ about 1:30a, which was easily remedied by popping her pacifier (aka a dummy in some parts of the world) back in. The second waking was @ 4ish, which was definitely long enough from her last feeding that I figured she was due for a feed and diaper change. I turned on the lights and started to get everything ready when I thought I should put her pacifier in to keep her from waking Sailor Jody. Much to my surprise she fell instantly asleep. Well, alright! Guess she wasn't hungry after all!
Two: I'm still working through my random mix tape collection, which just got all the more random. The first mix--which had lots of promise since it was 110 minutes--turned out to be totally thrashed and wouldn't play. I would later rip ribbon out of this tape and drop it into a bin in the hospital.
The second mix was a solid 60 minutes of steel drum music. The hell? I have no idea where this tape came from, if it was mine of Sailor Jody's, etc. I don't think either of us ever when through a phase where were into music from the islands. So bizzah, mon.
Three: Looking over our bank accounts this morning (as I do pretty much every day), I noticed an odd charge to our credit card: $49.95 billed to Chemistry.com. As in the dating site. Ok, the FUCK?!
Now, a less secure person might trip right the fuck out at seeing that, especially on the heels of my recent diagnosis, but the good news is that my husband (1) loooooooooooves me and (b) isn't one to actively seek out the company of women, to put it mildly. To put a finer point on it, the average woman drives him batshit after more than 20 minutes. You better believe that I am beautiful and unique snowflake, dammit.
All that said, I've contacted my credit card company and Chemistry.com to get the charges reversed. I'm also hoping that they'll give me the contact info of the person who tried to establish an account (name, email addy, etc). Because I've got the time (and for now, the energy) to exercise my sleuthy and wrathy sides.
In other news, Sailor Jody is in Chicago on bidness, so I think I'm going to try to flush our hot water heater today. Fingers crossed that I don't flood our basement or scald myself in the process.
12th radiation treatment today...happy to report that some familiar rad tech faces were back on today after a few days of nothing but uber blonde strangers, trainees, and overly reassurey-touchy males. I'm good, guy--hands off.
Seriously, folks--I've had enough change in the last odd-month, can't I get some consistency with my new morning ritual?
Speaking of radiation, I think they're going to tack another three onto my treatments, bringing the grand total to a symmetric 33, meaning I have 21 more to go. From the sounds of things, Dr. Radiation ran into the head of my onc team--aka heald of colorectal surgery in these parts--and asked if he would want me to get nuked a few more times since one of the lymph nodes that appears to be involved is "lateral" or some such thing...anyhow, that's why the rad counter in the sidebar got bumped up a bit. Hopefully I won't be totally hating it by that point (with the burns and GI issues and fatigue and did I mention the burns?) and that it'll put even more of a hurt on my tumor pre-surgery.
In other news, my mom left today since I've been feeling pretty good and we have childcare pretty much covered for the duration of my treatments. I'm already exhausted.
*CA=cancer. The abbreviation bugs me for some reason.
So the results are in, the mostly-washed masses have spoken: 39% of you want me to talk about cupcakes (and possibly pink tupperware cupcake carriers) when not going on and on about my tumor. Coming in a fairly distant second was puppies, with 23% of you wanting to read about a more snuggly topic.
This brings me to the aforementioned theory of voting, which was that the vast majority of my female readers chose cupcakes, with the guys picking puppies. This got a little fouled up in the final days, with rainbows, ponies (13% each), and lollipops (10%) making 11th hour strides. This, I attribute to the contrarians and eveners among my readers.
I've left up the old results for the time being but have posted a new poll as well--What really is the best medicine?
11 down/19 to go. Woot!
Hey y'all--Treatment #9 down today, 21 more to go. Wanted to let you all know that the appetite has turned around 100% since I put my ego aside/got my shit together and actually started following the directions of my meds. Yeah, chemo is probably not something you want to muck around with, so when they say take with food, take with friggin' food already. Dummy.
Also wanted to point out that I've tried to clean up the look of my rambling posts a bit--anything longer than 3 paragraphs can be expanded by clicking on the [more...] button. Let me know if anything is broken.
Finally, two days left to vote in MCD's* first sidebar poll...I have a theory on the results thusfar but I'll share them with you after voting is complete so as not to skew the results. Eff Iowa and New Hampshire, get your blog caucus on!
*Oh CRAP.
I love my car, and not just because it's the first car that was "mine" that wasn't a Ford Escort (although that certainly plays a part). I'm currently driving Sailor Jody's hand me down: a black/black '99 4D Passat sedan...not the most exciting car in the world but it's pretty reliable, the design has held up over the years, and what can I say, I love driving stick (wink nudge blah).
The car has its problems: a black car with black interior gets hot as hell in the summers, the moon roof springs the occasional odd leak which floods the foot wells in the back seat, you pretty much have to be on top of the car to get the keyless entry to trigger, and the electrical system leaves much to be desired. This means that the cruise control hasn't worked in several years, the cigarette lighter is worthless for charging phones, and the radio reception is spotty at best.
The car has a CD changer in the back but I am both lazy and forgetful [Jones], so I'm guessing the CDs haven't been changed in at least a year. So, change the damned CDs, right? Wrong. Digging out the Christmas decorations this year, I came across the box of mix tapes that I have been carting around for the last decade, sitting dusty and unplayed for just as long.
I threw those tapes--some with cases/labels, some without--into the ol' Passat and have been playing them pretty much since this whole nonsense began, a fortunate coincidence at that, as the music has helped bring out that almost forgotten but certainly not completely gone part of myself: the stubborn, boozy, foolish, bitter, carefree, irresponsible, shit-starting, not-studying, smack-talking, random-mooning, parietals-breaking, skinny-dipping, shot-gunning, cup-flipping, Anchor-Manning, keg-tossing, The Bottle-spinning brigita of yore, the one who gave as good as she got, the one who would never back down from a challenge (even when she probably should have), the one who would never waste time dwelling on mistakes of the past when there were so many more fun ones to be made.
Aside: I promise not to make a habit out of talking about myself in the third person.
I got (and certainly deserved) the less-than-flattering nickname of No Rally (™ Gordo) my junior year for often failing to pace myself and crashing while the party was still going on. To finally learn my lesson these 10+ years later, I have to pace myself through this whole ordeal. Not rallying--not an option.
But getting back to the original topic (and the post title), big thanks to Lanny of the List for her mixes and Cappy for sending me a tape of a Legion of Doom performance. Because clearly my taste in music really hasn't changed since '96. RAWK.
Latest shout out to the Brigita Bomb Squad (as I've heard you've named yourself--nicely done) for the book that arrived in yesterday's mail. I look forward to tucking into that, just as soon as I finish Colbert's book. I am thisclose to writing the Writer's Guild to ask them to stop striking so The Report can go back on the air.
Dear WGA,Thanks for the book guys. :)
I am girl living in Wisconsin and was recently diagnosed with cancer. The only thing that makes me laugh any more is The Colbert Report, and while reruns are still pretty darned funny, nothing beats some piping hot Colbert on the TiVo. Please find a way to negotiate a new contract very soon. If you don't you must hate America and love cancer.
Sincerely,
Sugarmouth O'Riordan
I walked out of this morning's radiation treatment annoyed and cold and frustrated until I realized--I had more than just an appetite, I had a specific desire to eat. I wanted a milkshake. No average milkshake would do, mind you (read: McD's was not on the menu), but fortunately here in WisCOWnsin, we've got lots of options when it comes to our dairy.
First, I struck out for our neighborhood frozen custard place, Michaels, which is a slam dunk in the delcious department, but I was girding myself for disappointment since it was only 10:20 in the morning.
When they wound up being closed, I trekked a bit further down Monroe to Mickies Dairy Bar which, despite its being a breakfast place, was closed as well, presumably due to the holiday/students not being back in town, etc.
Next stop was UW campus, where I hoped the Dairy Store would be open for business...jackpot! While there, I got some cheese and smoked chicken (for mom) to go with my vanilla shake. The unfortunate end to the story is that the shake left much to be desired (too thin, could have used a little boost of vanilla extract), but at least I got the calories in me.
BTW, Milkshake Time is an in joke between Sailor Jody and I that goes back to before we were married, at Crazy Tom & Maura's wedding, in particular. We were living on the west coast at the time, so on the flight back east, I managed to pick up a nasty cold, while himself took a red eye and was exhausted. Needless to say, we weren't exactly the life of the party and I'm sure many were wondering why I was so head over heels with such an apparent dud.
Anyhoo, between my cold, our shared fatigue, and the relentless dehumidifying effects of the hotel heating system, I was parched as hell and in search of an alcohol and caffeine free pick-me-up. I must have had a similar epiphany to todays, composing this classic folk song for the ages on the fly:
Milkshake time!
Milkshake time!
Now it's time for milkshake time!
Sheer genius, I tell you.
Look no further than a block down the road from our hotel where a good dozen of us supped at a quintessential tri-state area diner, complete with myriad Greek offerings on the menu and an expansive pastry case. I believe this was also where Cappy & Marzola came thisclose to getting their drunkasses (and the rest of us) tossed on bad behavior, but I got my milkshake.
Hope the rest of yas are having good days as well. :)
