Pieces of Me

Great news from the guts front: I got my drivers license renewal form in the mail the other day and along with it came a set of orange dot DONOR stickers. I (and everyone else in my GI support group) had been under the impression that we cancer veterans had to keep our spare parts to ourselves.

Rather than languish under flawed assumptions, I thought I should give a call to the authorities on the subject, and what did they tell me?

I can still donate my organs! Ok, well, maybe. It depends on circumstances that we didn't get into, but the good news is that I'm a definite maybe! Hooray!

It's Like an Orange on a Toothpick

Remember the hat that I wore pretty much all last summer to keep off of my photosensitive face? The one I got in the Allure Safe in the Sun Beauty Box? The one that's actually kinda cute? Probably not, because I wasn't exactly posting a lot of pictures of myself last summer.

Anyhow, that hat? It doesn't fit me any more. Because my hair is back, in all of it's unruly, prematurely white glory.

I'm Published!

Ok, so it's just another place on the 'net, but I got paid for it*!

Dealing With Cancer: A Kick in the Ass.

It's a 3-part series, so you might have to poke around to find the other two parts. Me, verbose? Never.

Ok, so the $$ is only enough to pay for 1.5 parking tickets, but still...

The Worst 15 Minutes of the Last Year*

Yesterday I had my six-month follow-up CT scan. I hadn't been thinking much about it before the actual day, mostly because I knew that the only thing worrying would accomplish is steal precious sleep.

I was a little on edge yesterday since I had to fast prior to the scan and I am not one to skip meals. Ever. The first appointment was 9am labs, which went relatively ok, except for the fact that the IV needle that the tech left in wasn't exactly comfy, but then hell, it's pointy metal and it's not supposed to feel good, right?

After pounding three large cups of contrast for the scan (which I tolerated a little more than usual since I was so dehydrated and am not one to deviate from the NO FOOD OR DRINK FOUR HOURS PRIOR TO SCAN directions, even if it is water), they brought me into the CT room.

As soon as I laid on the table, I started to panic mildly. This was it. This test would determine the path of my life for the next six months. Clear, and I would get to keep chugging along until the next scan. Not clear, well...I could only assume that meant chemo and surgery.

They hooked the IV up to the needle sticking out of my arm. Once the contrast started to flow, my arm started to BURN with an incredibly SHARP PAIN. "OW, it HURTS!" I cried, kicking one leg wildly. I knew that getting contrast through my port was relatively painless, but I'd had contrast via IV before and it never hurt anything like this.

One of the nurses checked my arm (or something--I was to busy motionlessly writhing in pain to notice) and she said very apologetically that the vein wasn't infiltrated and that the contrast was going to where it was supposed to, so they kept going. The initial pain eventually subsided, but the damage was already done, or rather the dam had broken.

As fat tears rolled out the corners of my eyes, the nurses apologized repeatedly for something which wasn't remotely their fault. I tried to brush it off as no big deal, but they kept on: "I'm so sorry, it's not supposed to hurt like that, I'm so sorry..."

I tried to get myself together in a bathroom, but immediately lost it, heaving sobs at the import of what had just happened. The scan was no longer a question mark on the horizon--it was happening. It had happened.

I beelined down the the caf for some much needed grub, which made me feel a bit better, then turned right around for my 11:30 acupuncture appt. There, the tiniest needle stick set off the waterworks again. I soon realized yesterday that while I can tolerate stress and tolerate pain, I can't do both at once, with one intensifying the other in a vicious cycle of tears.

I met up with Jody in the onc waiting room and proceeded to do just that for a half hour since either I or the clinic got my appointment time wrong. We were eventually whisked into an exam room, I answered the usual litany of questions, and we waited for the onc.

My onc's right hand man (who is also fantastic, by the way) had me feeling good with his positive demeanor but then delivered the news: the scan results were inconclusively troubling. Apparently, there was a dark spot on the scan that had gotten bigger since the last one.

Just then, the darkness got a whole lot bigger.

The doc said that it was very unusual for it a recurrence to happen in that area and since it was adjacent to a surgical staple or clip, it could very well be nothing more than irritation from that staple/clip.

None of that helped. I was a total fucking wreck and was on my second kleenex before he even finished his sentence.

The doc then said that he was going to confer with my onc and then try to get either an answer or plan of attack when they both came back.

Jody, universe bless him, was ever his logical, I-will-base-my-response-on-the-information-I-have-been-given self while I, on the other hand, was Missus Disaster Brain.

I was sick. Again. I had ten miles of bad chemo road ahead of me, and possibly surgeries, just to keep things interesting. They wouldn't be able to put me back on FOLFOX on account of my neuropathy, so they would try something new. Something worse. Something that would knock me down, wipe me out. I would lose my hair. Jody would lose sleep. Violet might lose her mother. Oh God fucking NO.

After a fifteen minute eternity, my oncologist walked in, with his right hand man right behind. It was ok. They had an explaination. The dark spot they had been watching, the one adjacent to the clip? Was my ovary. And this was not a bad thing, because ovaries in all pre-menopausal women change with a woman's cycle.

Holy shit, they had been looking at my beloved, transposed to a new location, thusfar functioning ovary.

And this is why my emotional fuse had been thisshort. Well, partly, anyhow. Because despite all lab results to the contrary, I was still cycling.

My hair is still a wreck. Jody's sleep is spotty at best. But Violet? Not losing her mom any time soon.

*Not counting my bowel issues, natch.

I'm Back!

Ok, so I've been back, just a little, um...busy? Sort of?

So, I know I owe you all a report on our trip to Puerto Rico (short version: the Ritz has crap coffee and is across the street from the cockfights. I wish I were kidding) and I've got something else of import coming up in a few days but I wanted to post a quick note pertaining to a subject very close to my heart.

Well, not so much my heart as it is my butt. Yes, we're going there.

We are now in the month of ides, Guinness, lions and lambs but also awareness. March is coloRECTAL (sing it!) cancer awareness month. You all know my story by now, so I will spare a rerun, but it is my duty (or is that doody?) to deliver the following PSA as a CRC veteran.

Colorectal cancer--and all cancers, really--does not discriminate, nor is it logical. I am proof of the fact that you can be so low risk as to be practically risk-free and still get The Cancer. It is critical that you remain ever vigilant and tuned into the ebbs and flows of your body.

It is up to you to inform your doctor of any irregularities, whether it be unexplained weight loss, weakness, bleeding, changes in bowel habits (translation: they look different, happen more/less frequently, etc).

If things have been amok for a while and are not improving, be the squeaky wheel. You must be your own advocate. And if your doc tries to pass them off as hemmorrhoids, have him/her give me a call. You know I love a good excuse to read someone the riot act.

Spread the word, and if symptoms warrant, spread your cheeks. I've said it before, but I'll say it again:

If your doody is red, get your pooper inspected!
Oh and PS, contrary to what you've heard, the prep is the second worst part of a colonoscopy. The worst worst part is being told you have cancer.

One for the FUCKING SHIT Files

A woman that writes one of the cancer blogs I follow has started in-home hospice.

She, and her family, is/are preparing for death.

Sweet merciful crap, stop monkeying around with inventing better and faster boner drugs and find a cure already.

The Blitz

This post has been a long, long time coming.

I bought this poster either shortly before or after Violet was born, putting it up in her nursery above the changing table.

I thought it would be kinda funny, you know, "You've got this living, breathing, breakable being that came out of your body and is totally dependent on you for survival but don't freak out! People have been birthing babies for, like, a bazillion years and it's all worked out pretty ok so far!"

For a while it was a force for steadiness and rational thinking for me, as I blurred through the first weeks of sleepless nights and endless shitty diapers and second guessing myself every waking moment (and some sleeping ones as well) and having a wave of relief wash over me every time my baby woke up from her slumber.

I was right, it was funny, but it turned out to be funny not so much in a "funny ha ha" way but "funny ZOMG WTF" way.

"You should get that blood in your stool checked out, it could be something serious."

Deep breath.

"Your blood pressure is elevated, you could be pre-eclamptic."

Deep breath.

"The cord was wrapped around her neck. Twice."

Deep breath.

"It's probably nothing, but you should get checked out anyway."

Deep breath.

"It's nothing cancer."

Breathe.

Brigita, breathe.

BREATHE, dammit!

Deep. Breath.

Now let it back out.

---

2008, was--bar none--the worst fucking year of my life. Terrifying. Desperate. Trying. Exhausting. Disgusting. Horrible. Horrifying.

• For one hundred and sixty-two days, I shit out of my stomach.
• During chemo, I had to go into the clinic for fluids on more than one occasion because I could either not get or keep them in me. On one day in particular, I think I had to empty my bag twice in ten minutes. It was like a damn fire hose.
  
• Another day during chemo, while taking a shower, I was so weak that my arms literally felt like they were made of lead.
  
• All of this and worse.
  

Cancer is awful. It is sneaky and cruel and unmerciful and--let's be honest--deadly.

But invincible? Sometimes, yes. But I got lucky. I kept calm [mostly] and carried on. I had relatively good health and even better doctors and a metric shitton of support behind me and all together we beat. That. ASS. Like a motherfucking drum.

Get thee behind me, 2008. Your reign is over.

The king is dead. Long live the Queen.

RIP Mixwit

I got an email today saying that Mixwit, a really fun and easy use virtual mix tape website, is shutting down as of 12/27. From the sounds of it, they're getting squeezed out by the music business. I can't say I'm terribly surprised, but it sucks all the same.

That said, here's the mix I made when I was in the thick of treatment. Give it a listen if you need a little angst to counterbalance all this holiday niceness.

Point Your Thoughts Hopkinsward

Hey All--I've got a good vibes/prayer request for those of you with a soft spot for those of use with ailing posteriors: A fellow Domer in a similar cancer predicament found my blog when Googling the hell out of his condition and we have been in contact for the last month or so.

Well, today is the big day, and as of about 10 minutes ago, John hit the table and will be having his big surgery. This is the first day in a string of very hard, very long ones that will ultimately get him to NEDsylvania, so while the journey is well worth it, it's still pretty hellacious nonetheless.

I ask that if you have five seconds to spare (one...two...three...), you shoot some happy, healing vibes or fire off a quick prayer to the Patron Saint of Poorly Poopers on John's behalf. If you have another spare five, please do the same for John's dear wife and his sweet toddler.

The similarities are really uncanny, no? Makes you wonder what's in the water out there in The Bend...

As Good As "Inconclusive" Gets

After firing that email about my CEA labs off to my chemo docs, I got a call back within 45 minutes.

Now, cancer sucks all kinds of rocks, but I have to say that when it comes to The University of Wisconsin Paul P. Carbone Comprehensive Cancer Center, the customer service I have gotten there is the absolute cat's pajamas.

Now, stray one foot outside the cancer center, and YMMV, but those guys are the best. BEST!

Oh right--the results.

So, remember how when I had that first colonoscopy and we were all "OMG THE SKY IS FALLING" and then I weaseled my CEA results out of some poor receptionist and I was all "1.0?! I so don't have The Cancer, I don't care what that doctor saw" and then that nurse was all "Remember what the doctor told you?" and I was all "But my CEA is wicked low, yo!" and she was all "Yeah, but."

:::A year passes:::

I got the call back from my doc's #1 guy and he was happy to report that my CEA was less than 0.5. I don't know if that's as low as it can go, but it's pretty damn low, so that's a good thing, even though we really can't gauge my situation by this tumor marker for colorectal cancer because according to te results of my first CEA lab work, I had no cancer (1.0), despite the gigantic tumor that was growing in my [completely taken for granted, fondly remembered, occasionally mourned] rectum.

Upshot: My CEA level is about as good as it can be, but I'm still going to get scaned every 6 months (instead of the usual protocol of every year) because my CEA is not a reliable metric in my case.

In other news, my Christmas cards are going out before the actual holiday. A Christmas miracle, indeed.

What's the What

I'm sure I'm not the only one that's crazy busy these days...the good news is that it's busy of the totally normal, average, boring (yet Christmas crazed) variety vs. the what the fuck do you mean I have cancer?! variety, so I've got that going for me.

Which is nice.

I've even managed to push my "condition" so far to the back of my mind that I haven't given a whole lot of thought to the lab work results that have yet to come back (or be revealed to me), although of course blogging about it made me think of it, so of course I just fired off a quick email to Dr. Chemo.

Otherwise, I'm just trying to stay on top of the pile: ready the labels and stamps and what not to get the cards out within 24h, keep the laundry cranking along, work on dismantling the many, many piles that accumulate throughout the house, and generally try to give a little more sense, logic, and order to the way things are organized and put away.

Or we could just burn the house down--ice dams and all--and start from scratch.

Seriously, How Did I Forget This?

Finally, Some Good Lab Results

I had my 3 month follow-up with Dr. Chemo yesterday and it went pretty much as well as possible (so far, anyhow...): my blood counts and liver functions are good, so I've got that going for me.

Apparently the CEA results take a while to come back--of course that's the one test that actually has something to do with the cancer--but then again, my CEA was "normal" when I was first diagnosed, so the results can only be bad or inconclusive.

In other news, my cholesterol results came back and were CRAZY low despite my having nothing but carbs, full-fat dairy, and other crap over the past year:

Total Cholesterol	185
Triglyceride	59
HDL	68
LDL	105

So, apparently the cure for high cholesterol is not diet but cancer. Who knew?

Ok, maybe it was the weight loss...

24/7/365 366* (and counting)

It's my cancerversary today--one of many commemorating various battles of my cancer war, but this is the big one--the one year anniversary of the first time they told me "you have cancer."

It was a week after Thanksgiving and I had a late appointment on Friday. We went into it with big plans to go to a fish fry for dinner so I could eat my face off after having done the whole fasting and bowel prep thing in advance of the colonoscopy.

It was cold, and it was snowing. It was the first time I'd ever been in UW hospital. We parked on the top of the parking ramp.

They gave me a key on an elastic ring for the locker where I would store my clothes. I wore my long wool socks, thinking I was clever. I remember getting wheeled into the room, but very little after.

Coming out of sedation, I would ask Jody what time it was before falling back to sleep. We had to wait for something, so why not sleep? This happened again and again, although I didn't realize it at the time.

Eventually the nurse came and brought us into a room. Getting brought into a room is never a good thing, but my Versed-addled brain didn't make this connection. Jody had seen it coming ever since they said we had to wait. His train wreck was in slow motion, whereas mine happened at full speed, if through a fog.

Cancer.

It couldn't be cancer. They must have gotten it wrong. How much can they tell from looking at something, anyway?

Cancer?

But I'm young! Fit! Vegetarian! Clean family history! I have a four month old, for Chrissake! It can't be cancer! It can't be.

Can't.

But as we know all too well, it was. Despite all the odds so clearly being in my favor, I had rectal cancer. Ass cancer, if you prefer (I know I do). What the fuck were we going to do?

Burn it.
Cut it.
Poison it.
Bomb it to the stone age and then salt the earth so it never comes back.
We hope.

A year ago today they told me I have cancer. And I'm still here.

---

I had a bad day yesterday. Not cancer-bad, but related to it, so in the vicinity. I was all ready to post something really depressing and maudlin but Jody and I had a chat and got my emotional train back on the rails.

I made a plan. Something to distract, cheer me up:

I got my Suzie Homemaker nails done.

My nails are the longest they have been since finishing chemo--which is to say not long at all--and I wanted to do something indulgent and solo over Violet's nap.

The color is Russian Navy and is appropriate on so many levels:

• When I met Jody, he was in the [U.S.] Navy.
• Like my daughter's name, this color is a shade of purple
• This color is also blue, like the "awareness" ribbon of my fellow colorectal peeps.

It's also totally badass.

Speaking of those last two items--ie my ass and it being a bad one--I applied to be a model for the 2010 Colondar. I'll let you know if I'll be flashing my scars for the masses when I do. :)

*I stand corrected--it was a leap year. Of course it was...

I Don't Care if They Can't Get a Good Stick From All the Scar Tissue...

...I am going to have them keep drawing blood until I get the results I want.

Be Careful What You Wish For

It comes as no surprise to those of you who've known me for more than five minutes that I'm spending more time on the throne these days, which means I've been able to catch up on those teetering towers of magazines that have piled up over the last few months.

In the past week I have read not one but two stories in Self about women who were suffering from either a mysterious disease or a known disease that had gone undiagnosed for several years (Morgellons and Lyme disease, respectively).

Both of these women were quoted as saying something to the effect of "I wish I had cancer, then people would believe me/we would know what is wrong with me/etc."

These crazy bitches have obviously never had cancer or known anyone with cancer. I would gladly explain to them at great length and great volume how fucking nuts they are for having said this.

Chemo Brain Blame Game

While at Whole Foods yesterday, I ran into a woman who looked vaguely familiar, and then once she saw me, looked at me with a face of recognition. Uh-oh.

I put on my friendly face, making small talk, all the while trying for the life of me to place this person, which really shouldn't have been hard considering how short the list is of people I know in town.

She tells me she's recently [re-]married and says I'm looking good (Does she know about my "condition?" How much?) and asks about Violet and I am mentally scrambling as I rack my brain to try to place this person and then before I know it we're parting ways and I'm still as clueless as I was before.

It was somewhere between the dairy section and the cereal aisle that I realized that the woman was the professor of the class that I abruptly dropped out of after getting diagnosed.

I eventually caught up to her and apologized for not filling her in on how I'm doing and let her know that I'm done with treatment and while I partly filled her in because I imagine she was curious I also wanted to make sure she knew that I wasn't making up a reason to bail from her class, which was almost as difficult as it was dull.

I Swear This Blog Isn't Going to Turn into MCD II, Electric Boogaloo

When I saw this on this week's Post Secret, I not so secretly wished that it was submitted by someone I know.

I'll Give You My Endoscope When You Pry It From My...

...well, you know the rest.

Study Concludes Colon Cancer Screenings Can Stop at 75.

Yeah, no offense or anything, but I think I'll stick to getting a scope every year or two from here on out.

Let me just highlight the following:

Colon cancer is the country's second leading cancer killer. Nearly 50,000 Americans are expected to die of colorectal cancer this year.

As I've said in the past, if your doody is red, get your pooper inspected!!