Rage Against the Machine Magazine

I have always been a big fan of the magazine, mostly because I cannot do the elliptical without them, but partly because they're like candy for the fluffy, superficial, lip gloss/pop culture/boy crazy part of my brain.

Other than the CTW PBS geek mags my folks got for me as a kid--I vividly remember 3-2-1 Contact being a favorite--I think that Seventeen was my first subscription, thinking that I was somehow ahead of my time for reading it at 13. After that came young women's mags like Self, Shape, and while I did indulge in Cosmo frequently, I would only read it at the doctor's office or buy the occasional issue in an airport.

Cosmo was one of the first to turn me off, and only partly because their target audience was about 3000 miles off from my single in the big city but working in Doc Martens in a non-profit warehouse and--gasp!--a virgin, so I couldn't [and more to the point, didn't so much want to] relate to the stories of $300 shoes or awkward office romances (tho I did still manage one of those, even working with the gay multitudes at an HIV/AIDS org).

But I digress.

My first big falling out with magazines came when I was about 4 months pregnant. I was coming out of denial (which not so coincidentally coincided with my popping out of my pants) and started to see less and less of me in the magazines that monthly jammed our mail slot. Cute skirt, would it still be in style when I was back to my fighting weight? Cool shoes, but holy crap, the thought of wearing heels for more than 15 minutes made me faint.

I thought the solution was to subscribe to mags that spoke to my life stage, so I promptly signed up for 9 months of Fit Pregnancy, the first issue of which showed up about three months later. Yeah, great timing, guys.

Then there was the fact that the maternity clothes and baby gear featured within did not really jive with my yard sale/thrift store shopping ethic and only served to make me both jealous and incredulous at the kind of woman that would drop a good thousand dollars on a wardrobe that they would only be able to wear for a handful of months.

Once Little Miss was born, my focus shifted to successfully getting through our day together. Unfortunately, most parenting mags cover the whole gamut of child raising and couldn't tell me why my initially great sleeper was now getting up four times a night or clue me into the reason why she was spitting up so much (answer: I was wrongfully insecure about my surgically-affected milk supply).

Which brings us to today, where I can't read anything any more (and have no idea why I have subscriptions to Radar and Nylon) because with the cancer and the chemo and the radiation and blargh. If you don't have a half page article on how I can resurrect my appetite or find the energy to do a modicum of exercise or ward off/treat various forms of unpleasantness related to this whole mess, then I have no time for you.

I can't believe just spent 20 minutes blogging about MAGAZINES. My pointlessness has officially reached a whole new level.

Happy FKNew Year, gentle readers. Anyone to actually stay up past midnight wins a prize, something sharp with small parts. I'm guessing potential choking hazards aren't so much a cause for concern in your household. ;)

TMI Alternative

Hey y'all--Feeling much better today (which just so happens to be my day off, coincidence?) and wanted to let you all know that there is an alternative website to get updates without all the barf and poop: BrigitaNews @ Care Pages.

I'm hoping that Mom will take the reins on this one and thus can't get too pushy on the updating front, but I'm sure lots of you want to stay in the loop without bring knee deep in the you-know-what.

Nuke 'Em High

So, apologies for the belated report on the first day of chemo-radiation therapy...The first day was an absolute fucking nightmare, but that was all due to the experimental trial I foolishly agreed to participate in (with no compensation, what was I thinking?!).

I'm enrolled in this study to see if CTVP--cat scan/virtual proctoscopy, aka virtual colonoscopy--is effective as a regular colonoscopy (plus ultrasound?) in evaluating tumors and stuff. I had been told by the woman in charge of the study that it was basically like a CT scan. Ooh, that bitch liiiiiiiiiiiiiiiiiiiiiiiied!

Ok, so I'll try to spare you to gory deets, but suffice it to say that the pain pills I've been popping since my abdominal surgery had apparently been constipating the bejeezus out of me, so that plus the back to back enemas I had to do at home for the CTVP basically gave me horrible labor and delivery flashbacks.

After that drama, I got to (1) lie on my stomach (not so easy with the recent surg) and (b) have my colon pumped full of air, which basically made me feel like I had to shit my pants. There was much wailing and gnashing of teeth. Don't know if I'm going to continue giving my time/body to science without some sort of compensation.

After that, the radiation seemed like a freakin' breeze: lying again on my stomach was less than fun (especially since I had to go cold turkey on breastfeeding and the boobs were not liking that), but it was relatively quick, painless, and humiliation free, which we like. I don't know what pooped me out so much, but I basically came home that day, had some lunch, and napped the afternoon away.

Yesterday was pretty easy and today even quicker (they had to shoot some x-rays the first two days to make sure I was lining up properly). Dr. Radiation gave me a scrip for some compazine because I've had some low-grade nausea since this whole mess started--reminding me a lot of my 1st trimester "morning" sickness where I would open the fridge/pantry and nothing would look good to me. I guess this means I'll be eating a lot of cereal for the next couple of weeks.

Speaking of food, Sailor Jody and I once upon a time had talked about franchising as a way of making some $$. One of our most favorite chains of all time is Jamba Juice, but unfortch they are pretty strict on their rules and you have to be able to open something like 10 stores at once. Anyhoo, I had the brilliant idea of getting Jamba into hospitals because LORDY all I want to eat these days are Strawberry Surfriders. Mmm!

Did Anyone Get That Truck's License Plate Number?

My surgery apparently went well on Friday, although it seemed to go a lot longer than had been indicated and I woke up to some wicked pain. They pumped me with meds and cranberry juice until it was time to leave (apparently even hospitals have last call), which was fine and dandy until the wheelchair trip to the lobby where the motion made me wretch up a single solitary saltine swimming in a pool of red. Lovely.

I've pretty much been sleeping non stop since I got home since I can't do anything and the drugs keep me pretty out of it. Fortunately, Mom & Sailor Jody have been doing an excellent job of taking care of Little Miss...hopefully I will be able to get back on my feet here pretty soon.

Dr. Niebler swung by yesterday for a house call, seeing a roomiefriend was just the thing to make me feel better, although this is one instance where laughter is not the best medicine since my abs feel like I followed up 5,000 crunches with a mule kick to the gut.

I should probably sign off now since I'm more than a little foggy from the drugs, but just wanted to let you guys know that my ovaries and I are doing swell.

The One Where I Give My Peeps* Their Props

First, to my boys. A few of you have left comments, and I can only imagine that there are a few more of you lurking out there...I just want to thank you for all of your love, humor, and support in the face of such bullshit nonsense.

I know I wasn't much for "delicate sensibilities" (tm Rog) back in the day, but if you keep coming back here, you're going to hear way more about my pooper and lady business than anyone not related to me by blood or law ever should. I hope despite all the graphic descriptions of my day-to-day, vociferous complaints/whining, and borderline denial of the existence of God, you guys stick around.

And now, for my girls. It goes without saying that you guys RAWK, and not just because more than one of you have offered to loan out your uterus for any future embryo-pops of ours. I'm 99% positive we're done in the procreation department, but the gesture is pretty much the most generous thing EVAR (and foolish--did I not tell you all about the morning sickness and 'roids and heartburn I suffered with Little Miss? Sailor Jody and I cook up a fetus that packs a punch).

Thanks as well for the books and medical insight and Pub Med research and offers to pretty much drop everything you're doing to drive/fly out to be with me/us. It sucks that we're all scattered to the four winds, but knowing you're all out there really does make this easier.

We're doing ok now--like Dr. Niebler said, I'm no less healthy today than I was three weeks ago--and there's really nothing concrete to ask of folks other than your prayers and good thoughts, but once this thing starts to ramp up, we might have a better sense of what our needs are. Hopefully we'll be cognizant enough to recognize what they are and humble enough to ask for help.

Finally, I want to reiterate that just because I'm not keeping up with replies to your emails, I am reading them and they really do brighten my otherwise melancholy days.

Ugh, I sound like such an overwrought pantywaist.

Well, it's rapidly approaching my absurdly early bedtime, so I'll sign off for the time being. Love you all lots, hug your babies, and know that If I ever say "peeps" again, you guys are allowed to punch me.

And the Hits Keep on Coming

Yesterday was my pre-radiation appointment to map out my pelvis for future treatments, due to start the day after Christmas. They made a belly board, molded to my torso with a hole cut out for my tummy. The purpose of this is to hike my guts a little bit out of the radiation field.

After putting in an IV, they gave me the rundown on what the best diet is for someone going through radiation: no fresh fruit, only cooked veggies (and even then, no broccoli), no whole grains...pretty much everything I love and sing the praises of for good nutrition. While I was grateful that all this was happening now and not during market season, this still really put me in a bad headspace for my scan.

They had me drop my drawers and lie on the board they made for me, then inserted a dilator into the Department of the Interior in order to best mark my cervix and put a marker of some sort up against my backdoor. After these indignities had been piled on, they ran me through the CT scan a few times, infusing me with contrast dye for the long final scan that would once again force me to pump 'n dump for 24 hours.

After the scan, they marked three pinpoints on my backside with a pin & ink, essentially giving me itty bitty tattoos. One of the techs asked me if it hurt more or less than the tattoo I have...yeah, not so much, lady.

After that appointment, I headed upstairs to the cancer clinic to meet with my medical oncologist (ie Dr. Chemo) and his support staff. I got to tell his nurse for the 1000th time in two weeks what drugs (supplements, OTCs, etc) I was taking. Seriously, people--nothing has changed in 48 hours.

To tell you the truth, much of the appointment is a blur, but the outstanding moments were my having to choose among three sizes of vaginal dilators which I will have to use for about a minute every day for the duration of my radiation and some time afterwards in order to prevent my vaginal walls from sticking together. Pleasant.

The other shocker was when one of the support people basically gave me the impression that the ovary surgery would probably not be all that successful and it was likely that I would go into early menopause, if not from the radiation then from the later chemo. The fuck? If that's the case, then what was the point of the surgery in the first place?

All in all, the whole thing was pretty upsetting and ridiculous and exhausting and then the icing on the cake was my catching a cold that came on like a frickin' freight train last night and now I can't breathe a lick out of my nose.

I had an appointment with the gynecological oncologists for my ovary transposition surgery today, but yous guys'll have to wait to hear about that because I feel like the walking dead and am about to go to sleep--Sailor Jody has been kind enough to offer to take on night duties for Little Miss, so I'll be on the couch tonight so as to shield myself from her cries.

The What and the When

Hey guys--I have set up a Google Calendar to keep you all informed as to what appointments and procedures I have coming up, as well as other stuff, like when my mom is coming into town (ETA: Saturday Tuesday or Wednesday). The button is in the sidebar--let me know if you have any problems accessing it.

Oncologist #2: Chemotherapy

As for the chemo piece, I will be taking 5-FU* for the same five and a half weeks. The good news here is that I can take it in pill form, which is just as effective as the IV version, meaning I can hold off on getting the port/central line installed (presumably in my chest--creepy) until my post-surgery chemo. Side effects of this are somewhat similar to the radiation (fatigue, nausea) but also includes chapped hands and feet. Like I don't already get plenty of that this time of year.

*As an interesting aside, this drug was synthesized in the building directly behind the one I work/worked in at UW. Not so interesting was that 5-FU was developed 50 years ago. Really? We haven't come up with anything better since a time when "wireless" referred to a radio?

Of course, the chemo means that I will have to stop breastfeeding. After getting [what I think we will all agree was] a much-needed breast reduction in 1996, I have spent the last decade wondering whether or not I would be able to nurse any future babies.

I always knew that the reduction was the right choice for me, even if it meant sacrificing any possibility breastfeeding, but seeing those those first drops of expressed colostrum was amazing, and I was unspeakably relieved that I could still nourish my wee one despite having gone under the knife.

I feel incredibly lucky that I have been able to feed Little Miss almost exclusively over these last five months, but I'm not ready for it to be over. I can't help but feel like it's being snatched away from me prematurely, especially with my infertile future coming at me like a sledgehammer to the face.

But I digress. After the chemo-radiation, I will get a month break to rest up (and let the tumor continue to shrink down a bit) prior to my surgery, where they will scoop out my south pole and [hopefully] refashion me a poop shoot, after which I'll get to live with an ileostomy for several months while the whole business heals up.

The sum total of the next 6+ months is all so alien and invasive and permanent and horrible and oh GOD, when did this become my life?

Oncologist #1: Radiation

The meetings with the oncologists took place in the afternoon (fortunately, the fever Little Miss had spiked the night before had dropped enough for her to get her into her regular day care). First was the radiation oncologist. The majority of the time was spent with his med student and resident minions, who informed us that while the radiation treatments would not make me Radioactive Woman and I would be able to be near and hold our sweet baby, she would be the last biological child I would ever have.

Not only will the radiation pretty much scramble my eggs, but even if I were to harvest them and freeze up a bunch of embryos, my uterus would be so scarred from the treatments that I would not be able to carry a baby myself, and those embryo-pops would have to be implanted in a surrogate. FUCK THAT NOISE.

Even though it was a relief not having to spend time hemming & hawing over that decision, I still was severely shaken. The during our earlier meeting surgeon had mentioned that they could hike my ovaries up out of the radiation field, but apparently the reason for that is to save their hormone function, not eggs. I really hadn't given much thought to the fact that in the process of saving my life, I would become barren. Insult, meet injury.

If the ovaries get toasted and their endocrine function is diminished, I will have to go on hormone replacement therapy to prevent my going through premature menopause, some side effects of which are decreased bone mass, sexual dysfunction, increased risk of heart disease...shall I go on?

But getting back to the radiation side of my neoadjuvant treatment, I will be receiving radiation five days a week for about 30 minutes at a shot over the course of five and a half weeks. I will be receiving chemo at the same time (more about that later), the purpose of which is to maximize the effectiveness of the radiation.

Short term side effects of the radiation include redness/burning at the treatment site, loose stools, fatigue, and nausea, while longer term effects could include chronic loose stools and decreased pelvic bone mass, increasing my risk of hip fracture.

The Upshot:

Had the rectal ultrasound yesterday...was a great deal less pleasant than I had anticipated. I had assumed that the probe would be little more than a glorified marital aid, where in fact it was more like a steel rod with a bolt on the end of it. The one upside was that the enema preceding was kinda awesome as I was more than a little backed up back there.

The ultrasound showed that the tumor is...

• 6cm from the anal verge and extends to 10cm, for a grand total of 4cm long.
• 40% circumferential (confirming the initial colonoscopy results)
• classified as T3/N1 (invasion through the subserosa/one to three nodes involved), putting me at Stage III.

Fuck.

Up to Date

So, that's pretty much everything that's happened thusfar. Tomorrow is the big meeting marathon with all the oncologists, etc.

Barring any major delays in the beginning of treatment, I'm completely blowing classes off ("School's...out...for...summer cancer!") and Christmas is totally canceled. Well, for everyone except The Saint Sailor Jody--he still has to buy me stuff. But no cards from us this year...maybe we'll send something out around St. Patty's Day. Or not. What ev.

WTF: The Detonation

My folks came back to watch Little Miss while The Saint and I braved the snow for my CT scan on Monday. It really wasn't any big deal--I had to drink several cups of contrast dye (which went down a lot easier than the PEG for my prep) so they could visualize the bowel and they injected me with more dye so they could see my vessels.

Prior to the injection, I wanted to confirm that I had to wait 24h before breastfeeding, as per the documentation I had been given. Turns out that it was actually 48h, according to the techs. Ok, sucks, but whatever--gotta do what we gotta do, right?

Fortunately, the tech warned me that the injection would make me feel like I was peeing my pants, because, ugh, yeah. The whole process was very quick and not claustro-inducing at all since the machine isn't completely enclosed (aside from the fact that they were only doing an ab/pelvic scan).

Oh yeah, I neglected to mention that I had to do a group presentation for my epi class that Tuesday. The subject? Colorectal cancer rates. Seriously. The twistedly ironic frosting on the completely fucked up cake. But I digress.

Wednesday was the meeting with the colorectal surgeon, which I thought was little more than a formality at this point, since I was pretty confident that the pathology results would be negative.

After a wait, we were called into an exam room by a nurse, who sat us down and asked me if I remembered what the doctor doing the scopy had said about the mass.

"Yeah, he said there was a 95% chance that the mass was cancerous."

She pursed her lips, dropped her eyes, and nodded with forced empathetic sadness. My throat tightened and my heart stopped in response.

After telling me I did indeed have cancer, the nurse launched into her own personal tale, diagnosed with breast cancer at 44, little kids running around, treatment, low risk, surgery, etc. etc. As she went on and on and ON with her Cancer Story, I grew more and more tense, coming thisclose to telling her to stop talking, save it, shut the FUCK UP.

Who was she to me? No one, other than the person who got the shit job of delivering terrible news, news which she would have to give over and over again in her job. Unless you were a nonsmoking pescatarian with zero family history that got ass cancer within months of having your first (and possibly only) child, I don't care. Shut your yap and go get someone who can tell me something about MY cancer.

After an interminable period of her droning and consoling, she left. I cried and The Saint was strong for me. I hated that he had to swallow his tears in order to be the tough one and wished he felt ok to break down with me, but there we were, snot and mascara running and my getting hot under the sweater that I couldn't take off because the shirt underneath was so ill fitting and my cursing the fucking pink socks that more than peeked out from under my cuffs when I crossed my legs, what seemed like a fun play of color that morning now mocked me and my clenching grief. Stupid fucking pink socks. Stupid fucking cancer.

Eventually, the doctor came in and gave me the matter-of-fact run down: radiation + chemo, followed by major surgery, followed by more chemo. They were going to take my rectum. If I had a family history, they'd take the large intestine, too, but since I was in the clear (as far as we can tell), I got to keep my colon, which they would use to fashion a new pouch/resevoir thingy so I wouldn't have to live with a bag or poop every five minutes. Yay?

The doc then gave me a digital rectal exam. For the record, love is *not* never having to say you're sorry, it's sitting in the same room as your cancerated wife while she gets her ass probed because all the lube and latex in the world won't keep you from supporting your best friend, the mother of your child, and the only person you can stand to be around for any length of time.

This was the In Sickness part of the deal. Apparently, In Health had skipped town without our noticing.

After rooting around a bit, the doc reported that he was encouraged by what he'd found, that the tumor was a bit further north than he had originally thought, making the possibility of saving my sphincter (always a good thing) and putting me back together again a bit better. The doctor's relief was evident and contagious. "Always go out on a high note," I snarked.

The follow-up plan from that meeting was a trifecta of appointments on Tuesday: transrectal ultrasound (just as fun as it sounds, I'm sure) to assist with the staging of the cancer, then meetings with both the radiation oncologist and medical oncologist.

Oh yeah, the radiation. How I could forget. So, the good thing about rectal tumors is that they can target them very accurately with the radiation to shrink them prior to surgery. The downside is that my ovaries are more than likely directly in the path of the radiation, meaning I'll be getting a free sterilization treatment out of the deal *unless* they can surgically "hitch them up" out of the way.

I won't be terribly confident about the possibility of that until we talk with the radiation guy, but I can say with near 100% certainty that I do not want to go to great lengths to preserve my fertility. I don't have the time or the energy to go through the whole egg ripening/harvesting procedure, then implanting multiple frozen embryos, winding up with more babies at once than I can handle. If Little Miss is our one and only bio-child, so be it.

Fuck.

WTF: The Purgatory

We spent the next several days crying and holding each other and forcing ourselves to think about something else, but mostly waiting for the weekend to be over so we could get closer to a real diagnosis. I refused to believe the "95% cancer" bullshit because, hello? I'm pretty much 180° from a person at risk for this kinda stuff.

My folks left Saturday to visit family a few states over with the plan of returning Monday for my CT scan, the results of which would form part of the staging puzzle.

At some point that weekend, I received a call from the hospital asking if I was "feeling ok" after the colonoscopy. Feeling fragile (and pissed and confused and frustrated...), I asked the caller to clarify exactly what she meant by that. Basically, she wanted to make sure I wasn't experiencing any bleeding, cramping, etc. I told her that that was all fine, but I was a little freaked out at the initial findings and asked if she was able to look into my file to see the results of my blood test.

After much poking around as well as hemming and hawing ("I can't interpret them for you, blahblahblah"), I got her to cough up the fact that none of them were "out of range." Now, word on the street was it that a low CEA level was a very, very good sign. In tears and with a sigh of relief, I thanked her, hung up, and proceeded to celebrate with The Saint. Dodged that bullet, I thought. Turns out, the first shot was actually a blank.

WTF: The Procedure

Once all the prep nonsense (and subsequent fasting--boo!) was out of the way, the procedure itself wasn't any big deal, mainly because I slept through the whole thing. I had actually been looking forward to the rest, how sad is that? My folks had driven out to take care of Little Miss while I was under, so that was one less thing to worry about. I was also really looking forward to eating my face off, Friday night fish fry style, to make up for the last 24 foodless hours.

So, the colonoscopy came and went with me under heavy sedation. Apparently, my recovery from said sedation was a very gradual process, with my waking up every five minutes or so to ask The Saint what time it was. These first few hours are pretty hazy for me, but the doctor that did the procedure poked his head at some point to tell The Saint that he regretfully had to go snake another drain before he could meet with us.

Eventually, a nurse came in and asked us to meet with the doc in another area. A curtain was drawn, which would have set off alarm bells, had I been more sober. We sat down and the grave-faced doc said that they had found a large mass in my rectum. He then told us that there was a 95% chance it was cancer.

The rest of the meeting was pretty much a tear-streaked blur. Something about the next steps being the staging of the cancer, which would be dome via a number of other procedures. They handed us a number of appointment slips with the dates and times of my upcoming CT scan and meeting with a surgeon. They drew blood to test my liver functioning and CEA levels. Then we left.

I don't remember the walk to the parking ramp (I've always tended to lose transitions), but I do remember getting into the car, whereupon The Saint broke down for the first time since we got the news. His crumbling made me fall apart all the more.

It was all so surreal and horrible. I felt numb yet stuffed full of jagged glass. Forget dinner out, any plans we had made beyond that moment were now irrelevant, obliterated by the sucking black hole that had suddenly taken over our lives. All I wanted to do was get home and nurse my baby, try to somehow reclaim a single shred of the normalcy that used to be my life.

WTF: The Prologue

When I told my OB a little less than a year ago that there was blood in my stool, she freaked the fuck out, saying it could be due to a serious problem, all the while I'm thinking, pregnancy is pretty serious, no, and aren't your shits supposed to get all wonky when you're knocked up?

I met with the GI specialist, and she and I agreed that I couldn't do a whole hell of a lot while I was pregnant, but if my craps didn't return to normal by my six week post-partum checkup, we would reevaluate.

Six weeks came and went, and since things were moving downhill with respect to my BMs, I agreed a colonoscopy was no longer such a wild idea. Two and a half months later, I endured the bowel prep--drinking a gallon of Hell's Gatorade which triggered my gag reflex like a punch to the back of my throat--and the subsequent pissing out my ass for several hours. I was relieved that the worst was over. Except it wasn't. Not by a long fucking shot.

My Arsenal

I have a loving husband
I have an incredible baby
I have a wonderful family and kickass friends

I have rectal cancer

I have no family history
I have not eaten meat in over eight years
I have never been a smoker

I have to wonder what wart-faced gypsy I pissed off to get a hex like this put on me

I have rage
I have bile
I have deep well of vengeance from which to pull the strength and will to grind this thing to dust