12.20.2013

Shopping Carts and Cotton Balls

At the end of treatment this summer, I posted a blog about reading people's "signs." The one where I asked everyone to leave the house with a little more grace in their pockets to hand out during the day.  The one where I gently asked everyone to pass out some "benefit of the doubt" to people who might not appear like they deserve it. And to look for malnourished bald girls with screaming children and give them a smile, not a scowl.

If ever there is a time of year where tensions are higher than expectations, it is now. And now is the time to put an entire handful of that grace in your purse before you head to Target for the 8th 11th 12th time this week.

All the pressures of holiday expectations aside, I had a little experience this week that reminded me of that very blog post. And now I will expanded my message and request you not only take grace with you, but simply pay attention. If you are sitting in a public place with your head buried in your phone while reading this post, I'm talking to you.

I was leaving Target the other morning with a cart stacked full of groceries. It was lightly snowing, as it so often does around here, and they hadn't come through the parking lot to clear the few inches of fluffy snow already on the ground. Fluffy snow is awesome, unless you are trying to push a stroller through it to the school bus stop or a shopping cart full of groceries.

Envision pushing your cart through a few inches of cotton balls. Now pick up 30 pounds of dead weight encased in even more cotton balls, and try to carry it in an effort to expedite getting to your truck in a timely manor. Cold temperatures have a way of making you want to hurry, and hurry is not a word in the vocabulary of a small child dressed up like a puffy marshmallow.

As I was multitasking through the parking lot, I pulled to the side so a car could pass me. There was no way to make what I was doing look easy. I was managing, and my strong-willed self was determined. But I was struggling. No sooner had I pulled over to the side and set Lachlan down than the very lady that passed me jumped out of her car and asked if she could help.

I was shocked and amazed and so close to my truck at that point that I turned her down.

Had I been the Grinch, my heart would have grown three sizes on the spot and I walked around with warm fuzzies for the remainder of the day. I even found the experience Facebook status worthy.

In the hustle and bustle of the holiday season, we so often have only our on agenda on our minds as we push through crowds, wait in long lines and stare at even longer lists. My heart was warmed by a women who was simply paying attention to what was going on around her and her action made my day. She blessed me and touched me and helped me, even if I turned her down.

I encourage you to look up from your phone, stop trying to order something from your Amazon app while standing in line at Target and look for even the littlest way to reach out and help. Please renew someone's faith in humanity.

We're about to get on a plane and head back East, and it's not the trip I dread or landing at 12:40am with 2 little kids up way past their bedtime. It's running into all those people who think their priorities are greater than everyone else's. It's all those people who won't be paying attention and will do damage to their fellow mankind along the way. I will head to the airport with extra grace to hand out, and despite having my own brood to manage, will keep my head up in case there is some way I can pay it forward and help make someone's moment just a tiny bit easier.

It's a sad reflection of our society when a simple offer of help is far more shocking and touching than just being ignored by someone buried deep in their phone or people too isolated to want to get involved. Pay extra attention this holiday season, for your act of kindness can trump any act of rudeness. Change people's expectations of their fellow man.

12.10.2013

2 Years


As I passed my 2 year "cancerversary" a few weeks ago, I wondered if the day was even worth noting; or even celebrating. I pondered any reason to recognize the milestone joyfully since I continue to walk around with the tiny invader still in my body and a future full perpetual chemo and many unknowns.

Perpetual chemo. It sounds like such a drag. But c'est la vie.

I was sitting around in my lazy housewife attire in my pajamas on that afternoon when Lachlan walked up to me. He stood at the edge of the couch and let out a spoiled little whimper, so I picked him up and wrapped him in my blanket. Within minutes he was asleep, and I contemplated carrying him upstairs and putting him in bed. For some selfish reason, I though holding him might be hampering my non-existent agenda.

I decided to sit there and hold him. It's rare these days for my still-very-much-a-baby 3 year old to sleep in my arms. What was my rush to take this moment and exchange it for the freedom to move about my little kingdom?

So I decided that this would be my celebration. I would spend the next 2 hours just holding this baby because I could. Because I CAN. 2 years ago I laid in bed in a daze of tears, wondering if I would even be alive to hold 3 year old Lachlan. On this day, I silently celebrated with him; innocently obviously to what the future holds.

12.03.2013

Tumors Wear Yoga Pants

I drove home today from my latest chemo infusion in the snow and put my scanxiety to bed for another 3 months.

This morning we got the results from a scan I had on Friday and heard my favorite post-scan words from my oncologist: "nothing new." Glorious words, always.

I sigh just typing it.

It's all I wanted to hear today. I wanted to know that the cancer continues to be contained and hasn't decided to start growing anywhere else. And anywhere else could be anywhere, but I tend to think it would be in my abdominal area given colon cancer's fairly predictable track record.

The party in my lungs rages on, but it's still "stable" as stable can be. There are still of plenty of kids hanging out. "Innumerable" as they like to say, but they haven't done anything drastic. They haven't started to thrash the house in a drunken rage, and for this we are grateful. I like to think of them as the nerdy kids who are having more of a subdued get together and less of a full on frat party complete with beer pong.

Across the board, everything increased in size by 2 mm. Or as I like to think, the tumors just had to put on their yoga pants after Thanksgiving. And I've suggested this before, but get out a ruler and look at 2mm. In terms of cancer, that's not really worth writing home about, especially given a few variables:

1. I had a 5 week break in treatment during the move. There was a little window when mom and dad were out of town and the kids might have thrown a little party given the lack of supervision. But mom and dad are back and the kids are possibly back to being on their best behavior.

2. Until I have my next scan, there isn't really a way to know if my little "chemo-lite" is doing its job by keeping everything stable. My previous scan was pre-maintenance, so this scan will need to be compared to my next scan to see if this maintenance business is really keeping things stable or if the big guns need to be brought back into the picture.

3. Apparently being scanned in a different facility with a different machine should be taken into consideration when we're talking about 2 mm. I'm not putting any faith in this, but I'm sure any doctor would throw out minor variables to soften the blow.

So maintenance chemo continues, the pump is clipped to my hip and I'm sitting here watching the peaceful snow fall on the lovely Twin Cities. It's all just glorious.

11.13.2013

Glorious Hair: Week 10

Getting a little shaggy if you ask me. Though it has made a few public appearances (at the gym), it's going to need a little trim and some hair product before its true social debut.

11.11.2013

Just Keep Swimming

As if suffering through another morning of bootlegged Tracy Anderson videos on YouTube wasn't enough working out for one day, I had to fulfill a promise.

I made a deal with swimmer Kyle that if I lost enough hair during this treatment, I would finally get into the pool with him. He has, after all, bought running shoes and joined me at a Spin class. It's the least I can do to jump in the pool with him and do more than my usual piddling around with deep water jogging while keeping that overpriced dye job safely out of the reach of chlorine.

Remember that dye job? The one that ended up as scraps in the sink a few months back? Yeah, me neither.

There have been a few salt water pools in my past, but my hair has mainly stayed up and out of harms way for the last decade. With my virginous sprouts reaching an inch long and completely untouched by a stylist's hands, I'm giving it every reason in the world to get wet.

I'm still battling my peeling feet and hands (referred to as hand-foot syndrome in those hip circles I hang out in), so I know a nice little water workout will leave them looking like I contracted some public pool disease I'll happily share in the showers. At least I can spend the ride home peeling and picking at them in the passenger seat of the Prius.

I took a leap of faith and bought a real swimsuit as to look the part. Add my matching swim cap and some pink goggles and people will at least think I know how to swim; until they actually see me swim. It's not that I can't swim, it's just that I lack the proper technique. I even took swimming in college for a PE credit, but the sadistic teacher stood at the side of the pool channeling Esther Williams and threatening to fail me over my breast stroke kick.

I have faith that if I don't make the Olympic swim team, I can potentially survive a sprint triathlon next year. That is, until someone kicks me in the head, tries to swim over me during the first stage or I decide the water is too cold and I quit. But first, I need to get from one end of the pool to the other without looking like a dying seal.

I'm swimming because I CAN.

11.04.2013

Banging



Though I do love my wig like the cuddly little pet it is, I've never been 100% comfortable with what it does on its own. It loves to hang down in my face, and no amount of bobby pin conditioning or tucking it behind my ears has taught it to stay to the side. So I'm left to wear it like I did in the 3rd grade (minus the giant bow) or go get bangs.

Talk about commitment.

Giving the wig bangs is like getting a tattoo; once it's done, it's DONE. And on a $400 wig, one must be very sure of their decision and confident in the person holding the scissors. I know you didn't finish that last sentence because you couldn't get past the price tag. Me neither. Especially when my insurance doesn't cover it (If you participated in that little crowd sourcing fundraiser a while back, know that a few hairs on that wig have your name on them).

I was looking forward to the big move for many good reasons, and one of them happened to be getting bangs cut by someone who does this sort of thing for a living AND knows me. And the knowing me part was important, as it wouldn't leave me having to explain my situation to a perfect stranger before they altered my look. No explanation necessary is a nice relief for someone who routinely has to explain herself to strangers.

I am thrilled with the outcome, even if I did have a minor little bump in the road involving some homemade gluten-free chicken nuggets, the oven and synthetic hair that's not partial to minor doses of heat. One hour and a very tiny pair of scissors later and I have picked my devastated self up off the floor and readjusted my wig. Apparently when they said to avoid hair dryers and flat irons, they failed to mention baking as well.

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'.

9.25.2013

If Sarah Can Do It

I've had plenty of what I call "come to Jesus" moments over the last 2 years. Those moments in life where you have to assess what's before you and make life changing decisions on how you are going to proceed down the yellow brick road. It's in those moments, where the ruby slippers meet the road, that we find out what we are made of and we choose the path we are going to take. They are the moments where we have serious reality checks.

I've had my share of "why me" moments and "so glad that's not me" moments. And plenty of moments that make me look at my life and be grateful. I've touched on being grateful before, but it's a subject that has been stirring in my heart for weeks as I've seen and heard first hand how my life and this blog are reminding people to be grateful in their own lives; despite the struggles they face.

I saw no irony when multiple people I encountered over a single week began to share some of their personal struggles, and then rounded out the conversation by telling me that I was a reminder to them that they could get through what was being thrown at them. That if I could get out of bed every most mornings despite the physical drawbacks and plug through the day filled with things like parenthood, surely they could get through their own struggles in good health.

But who am I to complain?

I think we all have the right to complain, but listening to NPR on the way to school every morning gives me daily reminders from around the world that keep my reality in check and remind me of how blessed I am.

I've admitted to my weakness, frailty and struggles already. I've told you that I felt defeated on more days that not over the last few months. I struggled to get through those last few treatments, often parenting from the bed or couch; battling the often painful side effects that impact my quality of life and robbing life moments from my kids. I've stood on my front porch, in my pajamas, bald head exposed, while crying on my 87 year old neighbor's shoulder at 2 in the afternoon. Merrick has heard me say "Mommy's too sick," "Mommy doesn't feel good," and "Mommy can't," more in the last 2 months than he has in the last 5 years. He has stood there on a Monday morning when I was too weak to even stand, and watched as I completely broke down.  "I didn't know you ever cried mommy."

But even I have my reality checks and my reminders that I have plenty to be grateful for. I think it's important to have those those things in our life. Maybe you read this blog just to me reminded of what you have.

I am grateful that I have a very curable form of cancer. When I walk into the oncology building or read articles and blogs I find on the Internet, I'm reminded that not all cancers were created equal. Some spread quickly. Some are found too late. Some do not have "cures," but merely means of buying time. On my very first appointment, I can remember my doctor saying that there haven't really been that many new drugs introduced to treatment colon cancer over the last decade, because what they have works. And clearly, it's working for me. Though I still have cancer, I am grateful that it is so tiny and manageable. It is cancer that I can live with.

I am grateful that I don't have any genetic mutations linked to colon cancer. Sure, I have that whole "family history" thing going for me, which is vital to know for early detection. But I don't have any of the mutations that are known risk factors. I will not pass on an even greater risk to my children, and I am even more receptive to the chemo drugs because of it.

I am grateful that my doctors had a heads up to my potential metastatic state before it was even confirmed to be cancer. For so many, metastatic cancer is a death sentence. By the time it is discovered, tumors have taken over, invaded and are large. The tumors in my lungs were on the radar before they were even confirmed as tumors. Over and over again I heard: "But they are so tiny." So tiny that I even came home one day and took out a ruler so that I could visualize exactly what tiny meant. The cancer in my lungs was being watched before it even had a chance to really grow, which in turn gave me the early advantage of fighting it.

I am grateful that I am young and strong and have the health to fight this with all my might. Because of age or general health, so many people in the cancer fight can't take a full punch or the highest dose or the strongest medicine. I sat in the infusion room one day and listened as a patient told her nurse she didn't think she could do any more treatments. Just 1 round had left her so weak from the nausea and the diarrhea, that she didn't think she could do it again. Granted, she was much older than I was, but I understood her angst. Chemo can be brutal. But I am young and I am strong and I can take it, even if it leaves me weak and in tears. I know that no matter how miserable I am one day, there is a light at the end of the tunnel; even if I only get to leave that tunnel for a few days before having to enter another.

I am grateful for all the drugs that counteract the drugs. While listening to the lady mentioned above talk to the infusion nurse, I was touched at the sensitivity, calm and patience that nurse had, despite the patients she had waiting. She talked about all the drugs available now to help counteract the nausea, the diarrhea, the mouth sores and all the other things that make chemo so miserable. She even pointed to me and said "See Sarah over there? Her counts are so low, that 30 years ago we would have admitted her to the hospital immediately and put her on antibiotics as a precaution. But instead, I'm going to give her a nice, painful shot in the butt to boost her white blood counts and send her home to take care of her dirty children. 30 years ago, people were sent home and spent weeks throwing up from chemo. Now we can give pre-meds before treatment and have pills and patches to keep nausea and vomiting at bay." And I think we all know how much I love my nausea meds and how dependent I am on them to make me a functioning member of society.

I am grateful for my perfectly healthy children. One way that I keep my own life in check is to keep up with the intimate lives of others. I'm sure that's how many of you view my own blog. For several years now, I've been following the very personal blog of two mothers with a very special son. I have read about their struggles, fears and minute-by-minute battles to just keep it together at times. It reminds me to be grateful for the son who drives me absolutely nuts with his constant talking, questioning and challenging. It reminds me to be grateful that I can put this exhausting child to bed every night and walk away, knowing he will sleep peacefully through the night and wake up in the morning just has healthy and happy as I left him. I appreciate their honesty and vulnerability, and it gives me a glimpse into what my own blog does. It is voyeurism to a degree, but healthy voyeurism.

I am grateful that I have Batman. All I have to do is turn on the Bat Signal and he appears. In a more practical explanation, all I have to do is go on Facebook and say I need help and it's there. Not only does Batman show up, but so does Wonder Woman, Spider-man and the Fantastic Four. At times, it seems every citizen of Gothom is at my door step ready to provide some type of support to get me through.

No matter how petty your struggle in life, you have to find something to be grateful for. We all have it; big or small. And the beauty of blogging is that we can get a very personal glimpse into the lives of others. We can enter the homes of complete strangers and feel an amazing intimacy with them we might not know face-to-face.

9.22.2013

Look for the Sign

At the end of last week, a friend shared a link to this story on Facebook. I'll confess that I don't click on everything people share via social media, but I did click on this. It quickly had me in tears, because I knew the message hit home for me; partly because it is an emotionally charged story, but mainly because it summed up my own week.

I encourage you to read it, take it heart and carry the message on as you venture out the door each morning. It is easy for us to get caught up in our own agenda, priorities and stresses and forget that we share this world with people that might be putting on a brave face just to walk out the door.

Our personal time crunch, things not going according to plan or someone cutting us off in traffic is our problem and ours alone. It's not something we should take out on others. On the flip side, we should always walk out the door with a side of grace in our pocket to hand out as we see fit. Not everyone will be nice, helpful or courteous, but we have to pull out that grace and offer it to them in case we can't see the sign around their neck.

After finishing my 12th round of treatment over 2 weeks ago, I knew it would take even longer to recover. As the weeks and treatments stacked on top of each other, my side effects compounded and I lost my spunk. I was having to put on that brave face to appear awesome, when all I really wanted to do was cry.

Let's all remember that on top of dealing with cancer and the sickness chemo brings, I still have to attempt motherhood. After a rough start to the week that left me sending up smoke signals to my family, crying uncontrollably in front of Merrick out of sheer physical weakness and having to say one too many times that mommy was too sick to do something, I finally ventured out of the house. There was no wig. There was no make-up. There was just me, trying to keeping my pre-teen short shorts from falling off and a rocking a beanie in 90 degree weather.

I had run several errands with Lachlan, who is currently doing more than his part to make up for the angelic 2 and 3 year old that Merrick was. I had made it out of Target with no fewer than 5 meltdowns and a lost phone. The icing on the cake included plenty of dragging, kicking, screaming, stares, screaming, stares, shrieking, dragging and a phone that was found hiding 30 minutes later in the crack of the restroom diaper changing station.

My next stop would be quick, but I thought I'd make it easier by grabbing one those obnoxious car carts. I was already reaching the end of my rope physically and emotionally, so it made my day when Lachlan spotted something in the wine department that he wanted and he flipped out. I can't say that I blame him. On the inside, I was having a meltdown over something in the wine department, too.

I pulled my beast of a cart into the line with him half hanging out of the car screaming. I watched to make sure I didn't bang his head too hard into the checkout, and tried to patiently tune him out. I knew there was no solution to his problem, so I didn't bother to placate him. And frankly, I didn't care. As I waited my turn, I heard the cashier ask the lady in front of me if she had a "valued customer" card for this store.

"I don't have time to look for it with THAT going on!" And she swiftly and blatantly pointed at Lachlan.

She never once looked at me, for certainly she would have noticed the bald girl who made no attempt to hide her lack of eyelashes that day. I looked like a sickly chemo patient. Had she even bothered to put Lachlan's screaming aside and look at me, perhaps she would have thought twice about letting the cashier know how much we were bothering her. I'd like to think that she would have seen my sign.

I'm sure my shock and disappointment was easy to read. As I pulled up to the cashier, I didn't have to say anything. She simply said, "Honey, don't you worry about what she just said. She clearly doesn't have kids, so she doesn't know what it's like." And with that, I let out a sigh of relief and let Lachlan continue screaming while I checked out.

It was one sentence and one attitude that completely altered my already hard day. I wish I had a sign to wear so that she and everyone else I encountered last week would know to just be nice to me. Or do something to make my life a tiny bit easier. I assumed that my appearance was my sign, but apparently not everyone could bother to read it.

Now read what's on the other side of this link. I promise it will make an impact.


As a side note, if you don't have children, let me assure you that we despise meltdowns in public just as much as you do. Please give us grace instead of dirty looks.


9.18.2013

Leg Three of the Relay

Today I'm commemorating 2 weeks since I started my final FOLFURI + Avastin treatment. For those that are too lazy to go back to the beginning of the year, that's the abreviation for the drug combination I've been on this time, plus a little extra on the side. Another 12 rounds of chemo is in the books and on my resume.

This morning I start what is referred to as "maintenence chemo," and that's simply me maintaining my tumors at their current size. How long does one maintain? As my Physian's Assistant told me 2 weeks ago, you do it until it stops working. "Awesome!" I said sarcastically to my bald self.

That right there is enough to bring a girl down.

So technically, I could be doing this for the rest of my life?

I'm trying not to think about that part.

I will also get the results of my most recent CT scan, which occurred on Monday. Once again, I'm trying not to assuming anything. Because what have we all learned in the (almost) last 2 years kids? Never assume anything when it comes to cancer.

I could assume that the tiny little tumors are continuing to get even tinier. I could assume that the rest of my bits and parts will continue to be spotless and cancer-free. I could assume that it will all be positive, but I can't and I won't. Prepare for the worst and hope for the best, I say. In the mean time, I'll take some of my beloved anxiety pills to get through that appointment.

My drugs of choice this time will be the same I have been on for the last 5 months, minus my little bathroom-inducing friend, Mr. Irinotecan (The I in FOLFURI). That friend happened to be a nasty little bugger, so we're all happy that he didn't get invited to the birthday party.

I've been assured by my infusion nurse that I won't have any major side effects, but I'll believe it when I see it feel it. There will be some minor ones, but nothing that will send me into my dark room to pop nausea pills. I should be able to resume life as usual, aside from having my port accessed and the little European man purse strapped over my shoulder with my pump for the next 2 days; a treat since I am normally hiding in my room with that set up.

Thanks to the arrival of Fall, I will be able to hide ports and tubes with some perfectly placed scarves and accessories. Explaining to Merrick's Kindergarten pals why a tube is coming out of my chest is not on my list of things to do this week. A trip to Target, however, is.



9.03.2013

Goodbye Little Bottle

And here I sit, on the eve of my last treatment for now. I've somehow managed to make it through another 12 rounds while staying on schedule, much to the thanks of this little bottle.

I know it's not over, since maintenance chemo is still on the playbill. But for now, I'm just looking forward to the break and what comes with it. My body is screaming for it.

I went in for my labs this afternoon, and as expected a shot was needed. One more shot.

The nurse handed me the vial so I could warm it up in my palm while she gathered her supplies. A little warm burns far less than fresh-out-of-the-fridge cold. In the end it didn't matter to me, as the burn of the injection is painful regardless. I still appreciated her gesture. Knowing the maintenance chemo won't drop my blood counts, I had to wonder if it might be the last one I get. Ever. Ever ever.

So I held that little baby tight, knowing it might just be the last time we cross paths in Wonderland. Just maybe.



8.28.2013

Barbershop Quartet

I caught my silhouette in the mirror as I walked through the house in the wee hours this morning. I almost had to laugh at how pathetic my head looked; no better than a feral dog with mange. So like any smart girl who thought a double latte at 7pm was a good idea, I threw out my plans to master a comb over for Halloween and went looking for the hair clippers.

At 2am, the house filled with the sound of buzzers and I bravely went past the point of no return. It gave me an unexpected feeling of relief as I went to town on what was left of my naturally blond hair. I dare say I smiled as I ran my hand across newly sheared head; like I'd been carrying anxiety around in the tips of my stringy mullet and I just let the weight of it fall off my shoulders as the hair fell off my head.

Clearly I've been fooling the world with the naturalness of my blond hair!
For the next few weeks, Kyle can walk around with his shinny head held high, knowing for once he has more hair than me. Then the side-effects will start to wear off and I can quickly remind him of what it actually looks like to grow hair on the top of your head. Enjoy your brief domination, honey, for soon I will actually need things like deep conditioner and hair dryers again!




8.18.2013

The Whig and Tory Party

National Wig Day finally arrived.

I had to deny myself the opportunity to wear a dress and some patent leather peep toes earlier in the week because the required hat was a total fashion buzz kill. I opted for wedges and a fedora to go with my newly self-cut mullet and looked a little more trendy than I'd hoped.

Another week of evening social outings could not pass by. Happy hour in a hat was getting old. I longed for lush long locks again, even if they previously were on someone else's head or some horse's behind.

Ironically, most people prefer the fake stuff and I have to say I was shocked at how real it looks. A lot more real than it appeared online.

As much as a longed for chunky bangs or changing up my hair color without actually having to change up my hair, I felt most comfortable in my current (or rather former) hair color and a long, slightly stacked bob. Now, to sit back and enjoy some hair that never gets roots, hours I'll never have to spend at the salon and being able to get ready faster than Kyle.

Here are my wigging fails:
Just a little too plain, blah and layered for me.
Though I like the "cut," I found the color a little too one dimensional. Like I got my blond from a box. Oh wait, this did come from a box! I'm so use to having longer hair, so I felt a little naked...says the girl whose head is practically naked.
And the Oscar goes to...
Ahhhhh, back to its original condition.
Bad highlight job and all, this baby is made from fake hair and is woven into a lace cap for a more "real" effect. Fake hair with a fake scalp.  

8.12.2013

Beauty School Reject

I wasn't putting off the inevitable, but the sad state of my stringy hair had merely become too much to bear. A bulk of it was the wiry, kinky regrowth from last year, so long and silky it was not.

Sure, it was fine under a hat with a thin little pony tail sticking out most of the time. I've been easily surviving that way for the last few months. But even that little pony tail had become overly sad.

Rather than take the buzzers to it, I opted to just take a tiny pair of beard trimming scissors and do my best. Let the hair stylist of the world cringe, but what's left of my hair is not worthy of a real cut.

My initial mission was to take it down a notch to make shaving easier. But until I can secure a wig and some type of hair cover to absorb sweat during Spin class and keep the sun off while wearing a hat on a day to day basis, the hair stays.

The sexiness I've been hiding under my hat. Good thing I'm married to a bald man, so he has no room to complain.

I'm being very brave here in my first post-cut photo. 1. I'm showing you what life without a flat iron looks like. 2. I'm showing you why hair cutting should be left to the professionals. 3. I'm showing you what me without eyelashes looks like.


Not bad from this angle. Just don't ask for a bird's eye view. In the end, this will be easier to get under my new swim cap, as I prepare to train for the 2016 Olympics.


8.06.2013

I'm a Winner

This last week, I found myself especially defeated in this lovely battle I'm waging.

Though I know I'm winning the most important part, I feel like my body is succombing to all the insignificant parts.

Aside from my weight, the nausea, the peeling phalanges and the occasions where Kyle sees me sprinting to the bathroom, knocking small children down along the way, there are other side effects which are really starting to stack up like 9am traffic on the 405 freeway. But this last week, both my upstairs and my downstairs fueled my defeatist feelings with a passion all their own.

Between hardly being able to walk or sit because of one end, and having a hard time drinking, eating and swallowing because of mouth sores on the other end, I was just mildly irratable to be around. Cranky or bitchy at times might even be a better description if you asked Kyle. When one cannot participate in both ends of the digestive process without misery, it is easy to become discouraged.

I'll have to give Kyle complete praise, as he called me from the store while on a beer run a couple of weeks ago, and I begged him to bring me every product Preparation H made. What kind of man can walk up to the cashier with his craft IPAs in one hand and various other obvious packages in the other with his head held high? My man can.

But how was I a winner this week? Oh, that would be Wednesday, when I went in for my off-week labs. My nurse came up to me and exclaimed that I was the winner. And what did I win? I took 1st place for the lowest blood counts of the day. Yeah! For the first time, I was considered "critically low" with my white blood cells (WBCs), and those neutrophils (ANCs) were practically non-exsistant. Like .01, non-existant. Like perfectly legal to drive in most states, non-existant.

I was secretly hoping I might get admitted for a little overnight "vacation" at the hospital, but it was a round of shots instead. She said I needed to stay away from snotty kids and go home and put a mask on. I was at the point where I was so sick I need to wear a mask, yet I felt perfectly fine. Or at least 99.5% of me did. I was sitting in a cozy recliner, still only able to lean on one cheek, so I think she knew despite feeling great, I wasn't headed to Spin class any time soon.

I ended up getting 3 "big boy" (480mg vs. the regular 300mg) shots over 3 days, and sat there even more defeated as she tried to find enough fat on my thigh to inject me. They caught up with me by Friday night, and I crashed fast and hard with the aches and flu-like symptons they bring on. I laid in bed with a heating pad on my achy neck (caused by the bone marrow going into WBC-producing overdrive), and hoping it would make me warm enough to stop shivering from the fever.

And in all of this, if you ran into me at Target, the most obvious thing that separates me from everyone else is my fedora-covered excuse for a ponytail. But that ends up being the most minor of concerns for me. The hair loss doesn't even bother me at this point, as it's the one side-effect that currently isn't causing me any pain. Everything else, the mouth sores, the raw finger tips, the peeling feet--those are all painful reminders of what I'm putting into my body.

My infusion nurse even told me to pay careful attention, as the peeling can quickly turn into skin completely schluffing off. Amazing that I'm intentionally doing this to myself; obviously for the best and most important of reasons. It has still worn me down emotionally this week. More so than the defeat I feel trying to apply mascara to my 5 remaining bottom eyelashes.

As of now, I should have 3 more rounds before I get a break and some "maintenance" chemo. I think a few strands of hair will make it to the end, and hopefully the rest of my body can hang on.

I'm on for tomorrow, as those 3 shots amazingly paid off. My counts were still low today, but high enough in the world of chemo.

I'd show you what was on the other side of that bump, but it's very ugly. And painful. And it invited 2 other friends to the party. One on the tip of my tongue and one on the left side of my throat. That right there was all it took to turn me into Debbie Downer for the weekend.



7.16.2013

Another Side of Effects

Last year, I had a chemo orientation before starting treatment; primarily to go over side effects.

This year, I had another chemo orientation. And once again, the list was read as I dazed off, knowing that nothing could possibly trump that whole bit about nausea and vomiting.

I knew my hair would thin again, but but didn't expect to loose it all at once. I knew I would loose more, which is how the last blog post came about. Though the list was long, I assumed that I might escape most of them like I did last year. I was wrong, kinda. And though they don't rank as high in misery as nausea, they are still a minor annoyance and sometimes major pain in my daily life.

Number 1: Mouth Sores
I never had a single one last year. But as with so many parts of the body, the mouth and lip are susceptible to damage because they have some of those "fast growing cells" in the body. I sat next to a young guy last year who was in far worse shape than me. He had just come back from a trip to MD Anderson (in Houston) and was waiting on his lab results next to me. He asked if I had any mouth sores, and then proceeded to tell me how bad his were; to the point of not being about to eat much. I counted my blessings and realized that having to travel to one of the big bad dads for treatment wasn't good. I was grateful for my very straightforward case of cancer.

There are things to help ease the pain, like special mouth washes. But as anyone who has had a canker sore or bit the inside of their mouths knows, it can hurt. Bad. There were a few days where the Arm and Hammer Baking Soda toothpaste was my worst enemy and teeth got brushed with toddler toothpaste.

So far I've only had a few minor run ins in this category, and the worst was on my lip. Right smack dab in the middle, just staring at everyone with its crusty self as I stood in line at Target. It took days to even start healing, which is uncommon with lip injuries.


No bueno for ice latte sipping.

Number 2: Peeling Hands and Feet
I now spend my Saturdays in the passenger seat of the Prius, peeling off giant chunks of foot skin and flicking them on the floor. All while Kyle rolls down his window and dry heaves over the grossness of it all. I told him I was just making sure there was plenty of my DNA around in the event he tried to have me knocked off. Between that and my shedding hair, I think the police will have no problem proving I was once there. Or everywhere.

The bottoms of my feet look red and raw as I lather them in Neosporan and put on socks in the middle of summer. The Neosporan is just my extra precaution on some of the spots that are more raw than others. My risk for infection is great, and running around at the beach or a public pool is just begging for nasty public germs. The neutropenics are in a class all their own!

I'm sure if I didn't expose them to so much wear and tear and water and flip flops, it might be slightly less bad. But when I get out of bed after days in a treatment coma and my finger tips are peeling, I know I can't blame my beach lifestyle for all of it.

You don't kiss mommy on the lips, she doesn't have to share her drink and no I don't want to try your fro-yo. No double dipping for this neutropenic.
A daily occurrence that makes for some raw feet.


7.09.2013

Lucky Number 7

I say lucky, because sitting in my lap in the first photo are my very positive CT results. Here is Kyle documenting my trip into sleepy treatment land.

I say lucky, also, because you get to see me without my eyebrows penciled in or my beloved mascara. Don't you feel lucky? What's the point when you're not even going to bother stopping to wash your face when you get home and crawl into bed for 48 straight hours.
Nikki hooking up my port.
What I call the VIP section. Really it's just overflow during a packed house. But with only 3 chairs, it feels like a different world away from the masses.
Benadryl coma. Oblivious to the music blasting in my ears. It's the power of medically-induced sleep.

Wigging Out

The time has finally come.

I was told at my chemo orientation this time that I would loose more hair than I did last year. And for a girl with very thick hair, last year's 30-40% loss was actually really nice. My hair washing, drying and doing process went from about 2 hours down to 30 minutes.

I started combing out chunks a week after my second round this time. I'm now 7 rounds in and dealing with my shedding hair has become a daily chore. I usually spend some quality time over the trash can every morning running my fingers through what's left to rid myself of what's ready to go. I then repeat the process before I take a shower and over the bathroom sink as I comb out my wet hair. It's all in an effort to minimize the hair that may fall out and form little colonies on the floor.

I've been wearing my hair pulled back in a pony tail or French braid for the last few weeks, as it hides the scalp a little better. But even with it pulled back, the slightest part in my hair just screams SCALP and begs the sun to burn it. I've taken to wearing hats every day and even picked up two more fedoras over the weekend. I'm not trying to channel Don Draper, I'm just trying to keep the sun from damaging at least one part of my body.

I haven't decided what's worse. To loose it all at once or to watch it fall out day after day; drawn out over several months. I guess in either situation, you have to face the inevitable one day.

My insurance has been nothing but amazing through all of this. Sure, I pay a nice monthly premium for private insurance, and I have a lovely high deductible to meet. But they have covered every single thing after that. Even the genetic testing I did last year, under the warning that many companies will not pay the hefty fee.

I was thrilled to call and find out that they will reimburse me for my "scalp prosthetic" no matter the price. Not that most of you know the wig industry, but that will enable me to get some higher end hair. Probably even "real hair." I'm not aiming for Beyonce nice, but something very nice for us regular folk.

Will I be rocking my wig as I run into Target for my daily visit to see if there's anything new I never knew I needed on a hot summer day? Probably not. But for the various social occasions, date nights and on non-gym days in air conditioned places where I have to mingle with the general public, probably.

I haven't done it yet, but I'm sure I'll be taking the buzzers to my current hair soon. I think having it really short will make the shedding less annoying, the giant clumps of hair I pull out in the shower less obvious and sweeping more about dirt and less about all the hair on the floor.

And I will be grateful for mascara, for it makes my 19 remaining eye lashes look amazing.

Clearly not a graduate of the Facebook School of Taking Self-Portraits.
Is that a gray I missed plucking?
Scalp. Lots and lots of scalp.

7.06.2013

18 + 18

18 years ago, my 18 year old self met a girl on the first day I moved into the dorms my freshman year of college. I think we shared our first college meal together in the dining commons, later shared a twin bed for much of the second semester due to a bad roommate situation, shared some misadventures that almost landed us in the dean's office, and shared those formative first years of adulthood and independence.

I was there went she came back to school and told me she met a boy while she was home, who chased after her car to say hello. I was there when they walked down the aisle on that hot summer day, with sweat dripping down my legs. I was there to hold her babies when they were breathing in their first moments of life.

And 18 years later she came here, family in tow, to take care of my family.

I guess that's what roommates do for each other. They share their beds, they share their care packages from home, and they share the love we have for each other's family when the need is there.

They also stay up till 3am during exam week to help you hang out the window and lower an extension cord with an alarm clock attached to the floor below, as payback to the boys who played their music too loud all year.

And they share the joy of cleaning up random toddler vomit on a Monday morning. As I held him over the toilet last week, I couldn't help but smile as I saw her run grab the bleach spray and paper towels and start cleaning up his initial hallway splatter.

And then there's her honey, who look my long honey-do list and humbly did it all in our East Coast humidity. He came here with a mission to take care of the caregiver, who is so often overlooked for the sake of the patient. He came here to relieve Kyle of day-to-day stuff that he pushes aside on the good days; when making the most of family time trumps the garage that needs to be organized, the gate that's been sticking or the edging that gets skipped during a quick mow.

Know that I'm crying just typing this out, Steph and Robb, because it means the world to us that you came here to fill the void last week. You served us in ways you can never know.
Three beach bum buddies.




7.01.2013

He was Smiling

If you aren't my friend on Facebook, you've had to wait for the official news. Sorry.

I should have noticed that my doctor walked into the room smiling, but I didn't. I was too busy bracing myself for what might be more bad news.

And as he said: "Would I have walked in here smiling if I had bad news for you?"

So that's the good news; we got good news.

Everything is shrinking. Chemo is working. The tumors are responding as they should.

I've mainly focused on the one tumor because it was the only confirmed cancer in my lungs. It was also the largest at 7.1mm. But I knew there were several other mystery dots that were most likely tumors because they were also growing. The pulmonologist just never bothered to find them because they were so small and because frankly, one tumor was all the confirmation we needed.

Though much of the scan report is slightly confusing, my doctor assured us that the news was good and the "overall number of the lung nodules appear to be decreasing. None of the lesions identified appears to be larger than the previous study."

As of now, the plan is to continue on with another 3 months of fun (5 more treatments) and then take a break and do some maintenance chemo. In my case, maintenance will mean me and my pump with no side effects hopefully. As I let it all sink in, I'm adding to my list of questions. When I'm sitting with your doctor letting the goodness sink in, questions are the last thing on my mind.

I wonder if I'll continue chemo until everything is complete gone.
I wonder if the tumors eventually give up and become inactive.
I wonder if surgery will ever be an option; especially as it becomes more obvious what is a tumor and what isn't.

In the mean time, I'll bask in the glory of cancer-killing power and enjoy chemo for what it is and what it does.

6.24.2013

The Scale is Never My Friend

Last year, I found out that running + nursing was not the magical reason I was seeing numbers on the scale I hadn't seen since middle school. I was planning on doing both forever to score the digits I was starting to see as I stuffed the kid's snacks and scraps in like a famine was coming. Little did I know that those combined activities weren't the magic calorie burners I thought they were.

That tumor, plus some major post-operative bed rest sent my weight plummeting to numbers I don't think I'd seen since the 7th grade. I even found myself wearing shorts in a size and length you should only see on a 7th grader. By the time I started treatment, I was rather underweight. Fortunately it was winter, and I was able to hide a lot of it under coats and sweatshirts and puffy snow bunny vest until I could start packing some pounds back on.

By the end of treatment, I was at a nice, 20-something year old weight and looked normal. Because in my mind, I am still a 20-something -- 24 to be exact.

I started treatment this time at pretty much the same weight, knowing I'd lose a few over the days I laid in bed. But as last time, I expected to rebound and get back to eating and working out after a few days. I didn't know I'd be knocked down so hard this time around. How much sicker could chemo possibly make me compared to last time?

I'd read on various message boards that people didn't get as sick with this treatment (FOLFURI) verse the last treatment (FOLFOX), and I'd have to agree. Though I am in bed, battling nausea and naps for several days, I'm not spooning my yellow puke bucket like last time. In fact, I don't think I've even touched the bowl I stuck in the night stand on the night before my first round. With that said, I still battle chronic nausea that is far more chronic indeed.

Though I'm not as intensely sick, I'm generally sick for a longer period of time. For 9 out of every 14 days, I have zero desire for anything espresso related I'm dependent on my nausea pills (and that pointless fake marijuana) to make it through each day and give myself a remote chance of functioning, eating and leaving the house. I've consistently lost 2 pounds with every round and I've not gained it back. As with last time, the minute I feel like it's going to stop coming out one end, it starts coming out the other. Sorry to make you cringe, but it happens to the best of us every now and then. And in Chemoland, it just happens a lot more often.

Though I wouldn't describe it as severe or debilitating to my lifestyle, it's still a little surprise that likes to show up without calling first. And it usually waits until I've gotten some of my appetite back and am actually eating enough to gain a pound. I get very defeated when I think I'm finally putting enough in, only to see it all drain out.

With this next round of treatment, I know my weight will officially drop me into "underweight" on that outdated BMI chart. Just as I'm not sure how much longer what hair I have left will hang on, I'm not sure how many more rounds my weight will hang on. I don't know what medical protocol will be if I have another 6 rounds or more ahead of me, but I am actively taking donations of gluten-free pot brownies if it keeps the cans of Ensure away!

So should you see me, my ribs, my breast bone and my medi-port hanging out at the beach this summer, just smile and pretend it looks normal.


6.21.2013

White Styrofoam Cup

The breakfast of champions!
I would much rather drink a cup of room temperature toilet water than orange-flavored liquid chalk, so I'm not going to complain about that tasty liter that has the flavor of very special water from a very special place. Not that I know, but I've heard from a few dogs and cats that toilet water is the best!

You can quote me on that. Toilet water is how I would sum up Omnipaque, but it taste delicious given the alternative. God bless the person who invented it, because this girl with her gag reflex does not do barium. I've never made it past a few sips before it kicks in.

Wednesday was my first CT scan since November, and my first scan since I started treatment in April. I've had 6 rounds of chemo, so this is a good point to see if it's actually working.

Scans are always a point of anxiety for we cancer folks. It leads us down that long hallway of waiting in the unknown. I recall blogging about "scanxiety" last year. On Wednesday, I was pretty relaxed given the circumstances. But I'm sure that's partly because I'm still dependent on my nausea drugs (that are technically anxiety drugs in the non-cancer world) on a daily basis, so I was not only nausea-free, but medically relaxed in a non-synthetic cannabis sort of way.

I also didn't have the feeling or fear that there might be something new. That's the good thing about actively being on the type of chemo I'm on now. I'm taking drugs that stop cancer from growing. As miserable as chemo is, I'll admit that it's almost like a security blanket for me. I know I was in the same position last year when cancer did grow, but the type of chemo I was on then wasn't meant to stop it from growing, it was mean to kill the microscopic cancer cells that were most likely drifting all over my body like dandelion seeds in the wind.

We have every reason to believe in a miracle and we have every reason to believe that the treatment is working; yet we have every reason to assume nothing. If that's the lesson I've learned in the last 18 months, it's to assume absolutely nothing when it comes to cancer.

Last November, I had every cocky reason to believe that I was just getting a baseline post-treatment scan and riding on my doctor's words that nothing new was expected. I was planning my return to normal and my new appreciation for every aspect of life. I was not planning on news that this journey wasn't quite over.

I'm sure my scan has been read by a radiologist by now, and his summary and my pictures have been emailed to my doctor. I'm sure we could call him for the results, but I don't feel the need right now. It's pure ignorant bliss. I've yet to actually get good news after any of my scans, so putting off finding out the results lets me live in my security blanket of chemo a little longer.

Don't stand on pins and needles just yet. I'll get the results next Wednesday, just as I'm slipping off into my Benadryl-induced slumber in the $16,000 chair. Yes, the price went up this time. Those chairs are just getting fancier and fancier and costing more and more to sit in. Blogging will be the last thing on my one-track mind next week, as my only concern will be for my bed and nausea pills.

I will update the results when I return to the land of the vertical again.


5.20.2013

Accompanied Minors Only

Sitting on the edge of your seat awaiting the resolution to the "You can't have your kids here!" confrontation? Me, too!

Last Tuesday, after spending the morning cleaning up 2-year-old vomit thanks to a visit from the Vomit Fairy, I took my overly bleached self over to have labs drawn and meet with several of the parties involved in what would ultimately be a resolution to me and my little delinquents in the oncology building. It wasn't just about me bringing my kids into the building for labs, but the outcome of everyone who brings children to the building - be it a patient or a caregiver or some weirdo who thinks bringing kids to a place like that is fun.

Don't worry, the behavior of the clearly child-loathing administrator was also addressed, and I think a passive apology was offered for the way in which she approached me, and accused me of things that did not apply.

I will start by saying my rage had since returned to that special little pocket I keep it in before we walked into this meeting. Kyle's presence there was nice, but unnecessarily needed to contain me. In his presence, I am civil and try not to crush people with my intellect. Especially people whose salaries are paid by the bills I incur while willingly making myself very sick every other week.

The biggest of pictures boils down to this. The oncology center is seeking a national certification that requires no child under the age of 12 be allowed in the "clinical" areas of the building, or be unsupervised. By clinical areas, they are referring to what Merrick knows as the "off limits" tile floors. Tile floors = sterile environments = clinical areas = no kids. Simple enough that even my 5-year-old knows the rules and follows them.

This certification is something they've apparently wanted, and me standing for 2 hours in a crowded hallway with my calm and contained children just reminded everyone it was time to start the discussion and get the ball rolling. I know that though I am not the cause of these changes, my presence there that day was probably the catalyst to a discussion that was long overdue in the management of that facility.

As far as my personal 12-and-under crowd being unsupervised, I'll admit to strapping the one that doesn't speak English yet to the stroller, handing him my iPhone, and telling Merrick to not take candy from strangers. In the past, when having labs drawn, awaiting results, or getting a shot, I've always been within eye sight of my unattended (extremely well behaved) children. I am there, I can see them, they know what my evil death glare means, but they are technically unattended by their mother who sits 5 feet away in a "clinical area." Because my children are trustworthy in small doses, I've never had any issues leaving them in such close proximity. They literally sit there and stare into their Apple products like a bunch of drugged up patients of Nurse Ratchet.

So the bigger picture is that in a few short weeks, in following with this national certification they are chasing, I won't be able to take the boys with me for my labs. I can bring them into the building, but they must wait with a responsible adult that I probably should know in advance. I briefly considered paying the first person I saw sitting on a bench, knowing there was a good chance that same person would be sitting on the same bench when I walked out.

This brings me to another point that was made, and one I never considered. Speaking from the clinical side, should something medically urgent happen to me while I'm there having labs drawn, what are they suppose to do with my kids? What would happen to my kids if they needed to get all crazy and call 911 on me? How could they survive the 15 minutes alone with my kids until either their father, a grandparent, or a friend could show up?

And while they were busy pondering that question, I secretly wondered what would happen if I passed out at Target over some amazing deal. Who would watch my kids then? Will I soon be banned from taking them into Target, too, just in case I have a medical emergency and no responsible adult can step up and sit with my kids until back up arrives?

There were other reasonable and rational thoughts and scenarios passed around. Some sounded logical, and some sounded illogical to someone with a compromised immune system who spent the morning cleaning up vomit. But in the end, because of no fault of my own, it's going to require more effort, time, and stress on my part to get through the next 10 rounds of treatment.

Ultimately, I'll be driving to a facility that is 30 minutes farther away to better suit the childcare we have available to us. I'll have to drop my kids off with the plethora of friends willing to watch them, drive to the oncology building, spend 20 minutes getting my labs done, drive and pick my kids up, and drive the 45 minutes home. So at the very least, what would normally take less than 45 minutes door-to-door, is now going to take me 2-and-a-half hours at the very least.

Does it suck? Sure. Do I really have a choice? No.

In the mean time, I sat back in my recliner last Wednesday and watched someone bring a girl far younger than 12 into the very crowded infusion room - the very room that has a large sign stating: "No Children Allowed." And I wanted to stand up and scream and point and yell "RULE BREAKER!" Why didn't someone actually breaking the rules get called out? Why did it have to be innocent me who follows the rules to their finer points? But as so often is the case with rules and policies, you can't single out the one, so you have to apply it to the many.

After a morning of vomit, excessive laundry, lots of bleach, labs, shots and a meeting, I had the wonderful privilege of being rear ended while pulling into my driveway (literally) by a young fellow in his hot little BMW. He was in such a hurry to get home that he had no choice but to tailgate me turn-for-turn for that final mile as I drove. I was even kind enough to elongate the pressing of my breaks as I approached our house and use my blinker to turn into the driveway; but apparently it wasn't enough.

You see, he had just had "such a long day and just wanted to get home." I didn't bother to tell him what my day consisted of, though I so badly wanted to help put what he was considering a rough day into perspective. I knew my aged wisdom would fall on youthful, unreceptive ears. I just smiled and told him to be grateful it was minor, be grateful I didn't have my kids in the car, be grateful his airbags didn't deploy, and be grateful he wasn't having to deal with this on the side of the freeway in the rain.

So I may be groveling all the way to my next appointment for labs, but I will try to remember that I, too, must be grateful; grateful that thought we must make a pain-in-the-ass change to our course, it can be made on smooth seas with all the help we have surrounding us.

Almost home.