10.30.2013

Glorious Hair: Week 8

I'm not quite to the point of baring my head in public just yet, and there are several reasons.

#1: It's still a tad thin for me. Though the sun isn't exactly spewing out damaging rays these days, there's still too much scalp and not enough hair for my liking and I'll continue to protect it.

#2: It's freezing cold (according to my internal copy of the Reference Guide for Los Angelenos Living Elsewhere) where we live now, and being that most of the body heat escapes from the head, bald heads should remain covered at all times. Even when sleeping.

#3: See #2 and factor in a few random flurries falling on my way to the bus stop in the morning.

I have taken to walking around the house "topless" lately, and not given much thought to opening the door to strangers, or the little girl across the street when she came over last week to see if Merrick could play. Being his age, I don't think she was fully aware of what she was seeing, but I could see the little wheels turning as she looked at me with a cocked head; trying to figure out what was out of place.

With that said, I do enjoy watching it grow back. I'm slightly enamored by the softness and find myself petting it whenever it's out in the open; much like one would stroke a baby, or a puppy. But never a kitten, because kittens are gross.

I'm also slightly enamored with the color that is coming in. Dare I say it has reflections of blond? Natural blonds are like Bigfoot; plenty of myths and rumors, but no confirmed sightings around here. At least not since I was 4.

Regardless of what's coming in, it's clearly not as dark as that brown stuff I shaved off in the sink a few months back. But so goes it with chemo regrowth. A change in color is to be expected, as is a change in texture. I'll enjoy my baby soft locks for as long as I can. I'm sure the wiry stuff is already on its way and so is that tiny little flat iron I ordered to fix them.

Why yes, that is a nice little scar on top of my head. Didn't everyone get hit by a 2x4 when they were in the 5th grade?

10.24.2013

Pump It Up

For those previous 25 rounds of treatment, I was sent home with my beloved pump.

The beast was slipped into what I referred to as my European Man Purse and slung over my shoulder like a foreign tourist until I could crawl into bed and bury it under a pillow. I was aware of it every time I rolled from side to side, or got up briefly in a daze to use the bathroom. It was more a nuisance than a hindrance, and I was never sad to see it go.

Things like being seen in public or taking showers were not of my concern. I just tried not to pinch the tubing or otherwise piss it off to the point of sounding alarms and disturbing my sleep.

So when this whole maintenance chemo started back in September, I was well aware that sickness wouldn't keep me in bed, and I would have to accept my public fate while toting this box around. Kids, cleaning, driving, Target shopping. It all had to be done while trying to keep stuff from snagging on the tube that connected directly to my port or the pump swinging around and knocking one of my kids in the head.

As if my first infusion day here in the Land of 10,000 Lakes wasn't full of so many pleasant surprises, one of the best happened to be a little change in delivery method.

Gone is the awkward box, the battery pack, the excess weight of machinery, the beeping and buzzing every 2 minutes when it sounded its mating call.

In its place is an infuser no bigger than a 4 ounce bottle. And inside that bottle is a fluid-filled ball. And inside that fluid-filled ball is a vial of 5-FU (5-fluorourcil), the only chemo drug I'm currently on (Avastin not technically being chemotherapy). And over 46 hours, that tiny vial is slowly infused into my port through a tube I hide so lovingly under my shirt. Same process, different tool. It reminds me of the round balls I came home with after my colon resection, full of pain meds that slowly defused into my belly, shrinking the balls like withering balloons.

This little bottle makes no noise, weighs mere ounces and clips on my belt in the most non-obnoxious of ways. It gives me the appearance of being a dog trainer with a pouch of snacks. Or as Merrick envisioned, a Disney tourist with a water bottle carrier on my hip.

It's a far cry from my battery-powered burden, and I'm almost welcoming of it into my life given my choices.

Water bottle holder. Dog treat pouch. Chemo carrier.
And in this bottle there is a bubble, and in this bubble there is a vial, and in this vial there is some chemo, that wiggled and jiggled and...nevermind.
Empties.

10.23.2013

Back in the Saddle

Moving to a new state meant a new oncology practice. And a new oncology practice mean that yesterday's round of maintenance chemo might be just a tad different from my previous 25 rounds. Good thing I'm not set in my ways. Right, honey? RIGHT, honey?

As the saying and my marriage goes: "Sure, you can do it any way you want, but let me show you the right way to do it."

There were a few pleasant surprises as I made my way back to the over priced recliner. I like to associate positive words when describing chemo, as I juxtaposing is a pastime of mine. Or maybe I just like to turn the negative into the positive. Or just maybe I see the tiniest bit of sun peaking through the clouds and declare it a beach day!

While going over how my infusions were going to roll, my nurse, in a complete abundance of Minnesota Nice, confirmed with me what my doctor told us last week. It just so happens that they like kids here, and that means my kids are welcome. Listen to those sweet words, people. Let them roll off your tongue.

My kids are welcome. I can bring my kids.

Not to infusions, obviously. It's hard to chase them down and beat them keep order for hours at a time when I'm strapped to an IV pole. Plus, I hate being interrupted during Netflix by needy children. Can't they tell I'm knee deep in some British period piece and don't care that they want more water, food or are bleeding?

It was just yesterday morning, while taking my final shower for the next 2 days (thanks to the pump) that Merrick interrupted me in a complete panic. For him to violate the "You're not allowed in our room" rule AND walk into the bathroom, there must be blood dripping or water over flowing somewhere in the house! Surely!?!?

Nope. He just wanted me to know that he couldn't remember the name of one of the kids in his class. A child he would be seeing in less than half-an-hour. And this, amongst many other important reasons, is why you don't bring your kids with you to get infused if you want to enjoy the already miserable experience.
 
Let's all remember that fateful day this summer, when all things smelly hit the fan and I was made the scapegoat for all those ill-behaved children of the world. If I can even put into words what a pain in the ass it was having to drag and drop my kids off for every petty little oncology appointment I would. Instead I'll resort to grown up phrases like pain in the ass to try and illustrate the additional 90 minutes it added to my day and the 2 gallons of gas each trip took in my Prius-eating monster truck. I will admit that all the love and help and graciousness I felt from every single person that took the time to watch them did help to overcome the ass part, but it was still a pain.

My mostly obedient, mostly well behaved, mostly trustworthy, sometimes quiet,  sometimes calm and occasionally impressive as long as we're not on the toy aisle at Target children may accompany me for those quick little visits for labs and getting disconnected from my pump. What normally takes less 15 minutes will actually take less than 15 minutes because I can duct tape Lachlan roll my confined toddler in with me. Huge. Relief.

So that's one little perk to this new process. The next is my new pump. Like I said, some things are a little different, and so far all that change is for the good; including my new little friend hanging from my hip as I type. Once my photographer gets off the school bus this afternoon, I might have to model it for you.
And that's how I roll for my 2 days with the pump. Plugged into my port. Keeping me out of the shower. Drawing awkward stares from the oldest child.

10.16.2013

I'm Just a Little Black Rain Cloud

We met my new oncologist today. It's time for a new practice in a new state.

We have officially survived a move half way across the country and I must officially let my life resume its course. It's been 4 weeks since my last "maintenance" treatment and it couldn't be any farther from my mind. I've just been skipping around our new house like a little side-effect-free fairy who eats dark chocolate because the calories don't count. Or maybe they do count, I've just yet to really notice them adding up on my backside yet.

And now it's time for that tiny little hand to come down from the heavens and smack me in the face and bring me back to my reality.

While I was sitting there, plotting out my continued plan for treatment with my new oncologist, an even tinier hand showed up and smacked me again. I was once again reminded that metastatic disease is grim.

Sure, people survive and live long lives after facing a stage IV diagnosis. But more often than not, stage IV colon cancer is "cured" one way and one way only: surgery.

As I've said before, at this point I am not a candidate for surgery. My lung mets are simply too small.

And as I've said before, that's a good thing.

And as I'm saying here, that's also a bad thing.

Because they are so tiny, they would not be easy to find should I go under the knife. And doing surgery that might be completely useless and damaging is not an agreeable risk. They are also spread out. It's not like one corner of one lung would be involved. All corners of all lungs would be accessed with no guaranteed solution. The risks of surgery are far outweighed by the success of chemo.

Though my appointment was thorough and it was nice to see that this doctor was on the same page as my last doctor, that little black cloud followed me out of the office. It was reminding me that I might have many years ahead of me still, and fighting cancer to the bitter end might be involved in every single one of them.

With that said, I do believe in miracles, I do believe in prayer and I do believe in a God that heals.

I also believe in alternative therapies, things that aren't FDA approved and other ways of going about healing that most doctors would snub.

But for now, one of the roads I choose to travel will still involve chemo to a small degree. It is still working to shrink and keep my tumors at bay.

And may the winds of hope come and blow my little black rain cloud away, because even if I go down swinging, the fight is years from being over.




10.14.2013

Cancer Ain't Pretty

I recently found this blog that I wrote a couple of months ago, toward the very end of my treatment. For whatever reason, it got buried and went unpublished. Now that I have a full set eyelashes again, I look back at this and realize how far I've come in what seems like an eternity a few short weeks. I pet my soft, fuzzy head. I wonder if my hair looks like it's growing back in blonder. And I'm starting to feel a pudgy satisfaction, though I've yet to gain back a solid 5 pounds. I'm moving around at my usual 110% again, despite some lingering side effects that try to slow me down. But in reading this, I was quickly reminded that mere weeks ago I was a hot mess; a sobbing, miserable, scary, mess.

As lovely as some of you may think I am in my normal, non-chemo state, let's be honest about how I look in my current state.

Please don't take offense if you've tried to flatter me recently. I haven't been put off and I've seen your pure-hearted goodness and best of intentions when you've told me I "look great!" It's just part of all those sweet social graces passed down to us, and we really don't know any better; especially in dealing with cancer patients or anyone chronically ill. But, really, let's be honest.

For starters, I've shown you what's going on up top. I've been vulnerable. I've shown you hair that looks just about as pretty as some mangy dog found runny the back alleys. Though I'm past the point of needing a good shave, my vanity and the risk of sun damage keeps everything under a hat or that synthetic thing I've named Robert. It was that same vanity that kept me hanging on to my thinning hair as long as I did. I am living proof that you can have cancer and still worry about your appearance to the vainest of degrees.

I'll be honest and say that despite what my eyes see when they look at the scale, they often don't see the same thing when I look in the mirror. Even in my malnourished state, I still suffer from body image issues and often don't see my body for what it actually is. My subconscious fails to notice that I have to pull my shorts up about 425 times a day or can see shoulder bones poking through t-shirts. For once, I think it might be great for my mental health to see a body that's 25 pounds heavier than it actually is when I look at my sad little naked self in the mirror.

But the reality is I don't look lovely, and you need not say nice things to fuel my artificial self-esteem. I know better. I see how odd I look with just a handful of remaining eyelashes. I see how odd I look with creases of wrinkly skin, desperate to be reinflated with any amount of subcutaneous fat. I see how odd I look with a breast bone sticking out farther than the very breasts is hides behind. I do my best to make the most of what I have left on days I have the energy, but this front is slipping through the cracks and not by choice!

Last year, I started out looking sick and gradually started looking well as I regained all the weight the tumor sucked out of me. This year, I headed the opposite direction. The power of fake pot was useless in creating an appetite. And even if it did, my GI tract is so damaged right now I don't think it can absorb anything useful anyway.

Unlike last year, I feel like I truly look sick this time. I look like a cancer patient, which I find so shocking, despite having been one for almost 2 years now. And all I can do is put on a hat, powder in my eyebrows and meticulously try and apply mascara to my 9 bottom eyelashes without smearing it all over the place.

I am not ashamed to flaunt my chemo-breathing self out in public. There are days when it's all I can do to put on a hat and look sickly at Target. There are days when cancer and chemo have more control over me than I do. I've rocked my bony self in pre-pubescent boob fitting bikinis at the pubic pool with my port and scars hanging out for the world to see. I am merely a public servant; a walking billboard for cancer and why you really shouldn't put off going to the doctor when you think something isn't quite right. I'm advertising the importance of preventative care, knowing family history and why sometimes it's just your luck of the draw.

You need not lie to me people. It ain't pretty and you do not need to convince me otherwise. Don't bother telling me I look good when I know it's not true.

On the upside, I have one treatment left, which means things like hair and body fat are on my immediate horizon! And all vanity aside, I'm beating the evil enemy inside, even if it's destroying what's on the outside.
1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15...16, um 17, maybe 18 bottom eyelashes?



10.08.2013

Fuzzy McLovin'

I never thought I'd say this, but I kinda like being bald.

This coming from a girl who has always had obnoxiously thick hair. A girl who stepped right out of a Doris Day movie with the lame excuse: "But I can't go out tonight, I have to stay home and wash my hair." Only it wasn't an excuse; it was a process.

It was deep conditioning, combing out, towel drying, air drying and hoping I wouldn't get too sweaty trying to blow it dry and need another shower. Now it's one swipe of the towel and 30 seconds of wig stylin'.

Last year, FOLFOX and its hair thinning abilities did what no hair stylist in this country has ever been able to do for me. It thinned my hair perfectly. I liked it. I didn't mind it. I welcomed it.

This year, FOLFURI thinned it as well, it just didn't know how to stop the party or hear the bell for last call. It just kept going. And going. Kinda like a few people I knew back in my early 20s, who shall remain nameless.

And now I sit here bald, or at least fuzzy. I never did lose all my hair, but enough that I finally gave in and buzzed it down to what turned out to be sweet relief. And I'm not exactly staring at it under a microscope every day wondering when I might see some sprouts. I have eyelashes again, so I know there's some stubble somewhere under that remaining fuzz.

And though you will always see me in a hat or in a wig, that has more to do with function and nothing to do with shame. I'd like to keep the sun from damaging at least one part of my body, so I keep it covered. I also know Merrick much prefers the wig, so I like to keep him happy.
Sister love with the wig.
Fuzzy McLovin'.