The adventures of Cancer Girl and Gun Boy

It's an unconventional love story, to be sure. But since when am I (or is anything else about my life) predictable?

All, this is Steve. We met online, in September, and were exclusive mid-October.

I'd gone online this summer, hoping to find myself a fling while I had a little bit of hair and some social energy. (Don't judge. So what if I like free movies and free dinners?) Steve was... not looking for a fling. (Because he's a better person than me.)

I wasn't sure (read: honestly did not think) that I had it in me to be in a relationship, especially with someone new to my life. On so many levels, I am not who I used to be, and I didn't think I would be able to invest the energy into getting to know someone. Nor, frankly, did I expect that I'd meet a man who would want to invest in a future with me, knowing that I had cancer, was currently between treatments, and that the chemo shoe was bound to drop in the next few months.

But... I met someone who did want to invest in a future. And he bought in, big.

He brought his compassion and his empathy and his kindness and... his... erm... guns... right into my house, and he has changed my life.

This man who I have next to nothing in common with, as far as his love of all things Star Wars and my conviction that I was meant to live (upstairs) at Downton Abbey, wanted to be a part of my life. So much so that he talked me off multiple ledges in the beginning, and has firmly stuck himself in the mud of the not-so-much-fun that is chemo.

When I wasn't sure if I wanted to put up Christmas this year, because I thought it would be hard to have a reminder that I wasn't living my normal holiday, his was the voice that reminded me that, no matter how crappy I feel, what has always made me happy will continue to make me happy -- and that, if I didn't put up my tree, the cancer would win.

When my hair started to fall out, and I was crying because I was losing (again) what had always made me beautiful, he stopped me, mid-sentence, and corrected me, saying that while he was sure my hair had made me feel pretty... I needed to know that it wasn't my hair, long or short, that had ever made me beautiful.

He's taken me to my doctor appointments, rubbed my feet when they're swollen, and held my hand while poison is pumped into my veins.

He brings me flowers, and Taco Bell, and whatever candy I tell him that I want from the gas station. 

And he bends over to kiss my cheek while he's pushing my wheelchair.

I wasn't looking for a relationship. I wasn't expecting to find love, especially now, in this season of my life, smack in the middle of cancer treatments. But man alive, am I glad that I did. 

A true story about how my love of chocolate is greater than my fear of anthrax poisoning.

Judy and I have been watching The West Wing for the last couple weeks. (I so love this show. Witty and tight dialogue, characters you love even when you hate them. It's, seriously, the best. And all seven seasons are at your disposal on Ye Olde Netflix. ... Not a paid advertisement, but for real. If you've never seen it, you should. And if you have, you should probably watch it again. I should know, this is my third time through the series in the last year and a half.)

Anyway, Judy and I have been watching TWW, and this afternoon, we hit Episode 20 of Season 5, in which Bartlet and some of his staff come into contact with a powdery pathogen and have to go into lockdown, and it reminded me of the time that we had to evacuate the building at work because we happen to share an office complex with a US Senator who isn't... uh... beloved, exactly, and had received some hate mail with white powder all over it.

I'd left the building earlier that morning to run down to Walgreen's and had just come back with a box of tampons (I thought about cleaning that fact up for the internet, but it's a true story) and a three lb bag of Hershey's kisses. (Also, true. I remember that there was a massive Hershey's display at the register, and a bag of kisses that was the size of a throw pillow? Sign. Me. Up.) I remember pulling up to the bank, walking in through the back door, setting my purse - and my kisses - down on my desk, and... the emergency lights going off inside the building at the same time we heard sirens screaming outside. Staff immediately rushed into the offices with windows facing the courtyard, and we watched as people with hazmat suits walked down the sidewalk and into the main entrance of our office complex.

I remember sitting down at my desk and popping open that bag of kisses, while the blue lights flashed, and chain-eating bite sized pieces of chocolate while we waited to hear what to do next.

Because it was a potential airborne toxin situation, the building shut down the power and killed the AC. For a few minutes, we had to stay on site. (In case of exposure, they needed a headcount of everyone who'd been in the building. You know, in case we all had to get shipped to the same hospital for treatment.) Once the envelopes had been cleared, the bank evacuated employees to our emergency location and we waited for senior management to determine who would be resourced to another office, versus who was able to work from home.

I remember sitting in a plastic chair, with my bag of chocolate in my lap, while my coworkers struggled. Once the immediate threat was gone, people had calmed down. But still, there were a lot of tears. The adrenaline rush was something else, and we had easily a dozen people who were currently displaced. Because the threat had been to a senator's office, we had been asked not to communicate and/or share details with friends and family until such time as the news could break. It was super surreal. Men and women visibly shaken, very emotional, which totally understandable, considering the roller coaster of the morning.

And I just sat there, eating my chocolate.

I was one of the few employees sent to another office for the rest of the day. I remember that afternoon, an employee who worked out of the other branch - the branch I had been temporarily assigned to - came to my desk and asked how I was. I was fine. I was stressed, because I was one person doing the departmental work of four, and I'd lost a couple hours that morning to all of the hullabaloo, but I was fine. She stared, and asked me if, really, I was okay.

And... I was.

I had a bit of a stomachache from all of the chocolate (I ate the entire three lbs in that one work day), but I was fine. I had been fine, all day. I just hadn't realized it until I was pressed for an answer that afternoon.

Because, here's the thing...  I already knew that life is fragile. I already lived, every day, knowing that I have very little control in how or when I die.

It's funny. I don't think of that day very often. It's usually an episode of TV, or a movie with some weird hazmat/airborne toxin situation, that takes me back. But that was a defining day, in that it was a day in which I realized that I'd come to terms with how little control I have overead death. ... Not that I want to die, or would walk right into it, because I don't, and I wouldn't. But I'm really glad that I had that super surreal day at work, for the knowledge that I was okay that day, with whatever came next. (I mean, I had three lbs of chocolate. And I'm sure that helped. But still.) That day, I was given a gift, in that I was able to recognize and actually see how living with cancer has helped me roll with the punches. It's not always easy, and it's not - on any level - constant, the acceptance that I have next to zero control in how matters of life and death play out, but I'm grateful for moments in which life (the universe, the Lord) hold up lessons I've already learned and remind me that I'm smarter than I was.

Five months

October 19th was my five month mark. I spent the day doing this:

(Not pictured is the 8 hours I spent in the car with Jo. Good thing we like each other so much, because GPS thought that was going to be a 4.5 hour drive. Clearly, GPS under (or maybe over?) estimates how often two 40 yr old women need to stop for bathroom breaks. And snacks.)

And considering that I'd spent the weekend in Vegas doing this

And the weekend before in California, doing this

I say that I'm still winning.

I'm tired and I'm glad to be home in my own bed, and I'm really looking forward to staying here for all of the nights until I go back to Houston  (11/7), but I am ofiicially over five months into the anticipated 3-6. I am tired, but I am happy. 

Oh, and winning. 

Four months

It's one of my favorite days of the year!

That would be: International Talk Like a Pirate Day.

AKA: Get a Dozen Free Donuts if You Dress Up Like a Pirate and go to Krispy Kreme Day.

This morning (after having had a sleepover last night with Maggie (7) and Sally (5), during which very few people got any kind of decent sleep), the Wood kids and I (sans Roomie, because she had a soccer game and thinks her priority needs to be with her team and not with us and our glazed donut pirate booty - lame!) dressed up and went to claim our goods.

One dozen donuts per person in costume = 5 dozen donuts. That's 60 donuts for five people to eat, kids.

And while we didn't eat all 60 of them, we ate... a lot of them. Like, until we all felt sick.

It was a very awesome morning.

And then, this afternoon, I met back up with the Woods to see this Mormon movie.

And, you guys... IT WAS FUNNY.

As in, actually funny. Not just laugh-at-Mormon-culture, funny. (Okay, mostly it was that. But I think it would be funny even for people who don't know about camp songs or ridiculous, totally contrived, but still somehow effective spiritual object lessons.)

I laughed. I cried. I thought about my life, about the people I love the most and would do anything for (including putting myself right back on chemo, even though it made me wish I could just die, in case it'll give me more time with them... but that's a post for another time). And then I laughed again.

At one key moment, I had just taken a swig off my ever-present water bottle and something happened that made me laugh. I mean, out loud. ... After spitting my entire mouth full of water into my hands and then letting it fall into my lap. (It was a super full theater, and I didn't have any napkins. Or warning. What was I supposed to do? Spew water on the kids sitting in front of me? ... I felt like spitting it into my own hands and then dumping that popcorny spittle into my lap was the right thing to do.)

You guys. This movie is funny. If you live somewhere that you can see it (which, mostly, is... Utah), you should. It was a good time.

And, when the movie was over, I walked outside to see this. You can try all day long, from wherever in the world that you are, but I'm telling you straight up that you just can't beat an Arizona sunset.

Pirate costumes. Free donuts. Harkins popcorn. A movie that made me laugh and made me cry. All kinds of quality time with my favorite little weirdos. A gorgeous sunset.

Topped off with the fact that, as of today, I'm officially four months into the 3-6.

It's been a really good day. ... And, so far, I am winning.

September 11th

Two weeks ago, I sat in an exam room in Houston, and I heard that, while my little friend had been growing... it wasn't growing fast enough to merit starting chemo right away.

A precious few thoughts went through my head:

Thank you.

I get to have my birthday month. ... Again.

I'll be able to see The Sound of Music in the theater on Tuesday.

I'll get to go to Tempe Town Lake on Sept 11th.

I've got another couple months to eat chocolate, and see if I can't get my stomach to tolerate beef and/or bacon again.

I have more time.

Thank you.

I love Tempe Town Lake. All the time, during all of the seasons. I love the lake and I love the park and I love the bridges. I love it during the light of day, and I love it at night when the bridges are alive with twinkle lights. I love it!

But I especially love it on Sept 11th. They plant a flag for every life lost on the planes and on the ground. Each flag has a name and a brief bio for the man, woman or child that flag represents.

It is a beautiful, holy, experience to go and walk among the flags.

Last year, I was still recovering from surgery and I remember walking through the flags very carefully, taking mincing steps as I made it from one end of the park to the other... grateful that I was strong enough, well enough, to be there - but frustrated that I couldn't stop and stand at each flag, reading the bios, as I had done in years past.

This year, I walked into the park and I stopped at three flags. I read three bios. And then I had to sit down. (Most of these pics were taken from a bench. Or as I walked into or out of the park.) I can't meander through the rows of flags anymore, and I can't bend down to read the names tied to the combat boots. But I was able to be there, and I hadn't been sure that would be possible this year.

I am still here, and I still get participate in the events and the lives that matter the most to me.

I'm so grateful. To be an American, for the memory of September 11, 2001 and the weeks that followed. For my life, and everything that has happened in it. That I got to spend yesterday morning in a park, looking at flags, thinking about life and remembering what matters.

Scan Day

I started today off bright and early in the Diagnostic Imaging dept. Here in Texas,  they use a different (tasteless and colorless) contrast than what I'm used to in Gilbert. And I'm here to tell you,  I'll take 32 oz of Tropicana OJ with a half cup of chemicals thrown in over the same amount of mocha flavored barium any day! 

I mean... Look,  I'm genuinely smiling in this pic. That's happened with barium exactly zero times. 

After my scan,  Judy and I went to lunch with Cousin Jan. This time she took us to The Raven (OMG, aaaaaaaaaa-mazing food!) and then on a driving tour of Rice. (OMG, beeeeautiful campus!)

After lunch, Jan and Jude dropped me back at the hotel do I could take a much needed nap,  and then they enjoyed some grown up cousin bonding time. 

After a good three hour nap,  I woke up with a screaming headache and a need to go outside and warm up. (Hotel a/c always kills me a little bit.) So Jude and I took ourselves on a walk of the facilities. 

It took us an hour to walk on one side of the street lunged with MDA buildings. My guess is that there's another hour worth of walking to be done on the other side. 

This place is GINORMOUS. 

And totally awesome. 

And at the end of our travels, we stopped for a selfie in front the main building. If you look at the tippy top of the pic, you can see the MDA signage. And if you look at our hair you'll see that this is probably my best matchy matchy hair cut pic yet!

I'll get results on today's tests tomorrow afternoon. Be looking here for the update.

Three months

Three months ago, today, I sat in Dr. H's office and was given an estimated 3-6 months to act before this tumor chokes me out.

Two months ago, today, I sat in Dr. Z's office in Texas and was told that #9 hadn't shown enough growth in the month from May-June 18th to merit starting another treatment plan right away.

A week from today, I fly back to Texas. I'll have another round of tests/scans done Thursday and I'll get the results on Friday.

Fingers crossed that the scan will show that my little friend is still little and I can squeak in another couple chemo-free months before I go back into treatment.

I know that it just is what it is, and when I'll go back into treatment and how that's going to look is totally beyond my control. But man alive, am I grateful for the last three months.

I am tired in a way that I didn't know existed eight months ago, and I have some discomfort that is pretty consistently bordering on pain these days, but I've said it before and I'll say it again... I will take feeling this level of crappy all day long, and for as long as I can get away with it.

I haven't been all that awesome about blogging lately. And, I'm sorry, but... I'm not sorry. It's because I've been busy squeezing as much life out my life as I can, and the reality is that all that living has made me really tired.

But listen... it's been a great three months. I mean, the best.

Here's to hoping that the doctors' calculations are off and I have, like, 372 months left. (And hey, assuming they're wrong, someday I'll get back to blogging again. Promise!)

July

You guys. This month has been crazy busy.

I know that I haven't blogged about it a whole heck of a lot. But I will. ... Eventually. I promise. (Read: hope.)

For now, let me show you what I did every day.

At the beginning of the month, I started writing down the highlights of the day every night. And... would ya look at that? I've been busy.

It's been a great month.

I went back to work. I had an old-fashioned sleepover with Jo and her girls when Dean was at scout camp. I went home for the 4th of July. I lit the freaking anvil. I got to sit with Jennifer O and talk for hours. I went on a roadtrip with Judy. I had lunch in Flag with Brett and Karen and Natalie. I drove over Cedar Mountain. I had a sleepover at the Cameron Trading Post. I got to spend a whole day with Cindy and Amy and Holli. I got to eat squeaky cheese. I drank an absolutely ridiculous amount of caffeinated beverages. I stayed up late with Rachel, and then again with Spence and Brea. I had breakfast and lunch and dinner with some of my favorite Utah County peeps. I got to have a sleepover with Mich. I ate almond paste cookies for the first time. (I'm here to tell you, it will NOT be the last time!) I got to hang out with my Solomon girls: Luana, Victoria Lynn, Cathy, Christine, Camille, Rachel and Patty. I got some more real chicken eggs.I ditched Sunday School with Lisa G. I got to see a whole bunch of cousins when I was in Utah: Amy, Holli, Shelly, Rachel, Julie, Everett, Lisa, Christie, Dr. Doug, Nate, Brooke, Lindsay, Klancie, Randy and Nikki. I had some sleepovers at Spencer's house. I tried bacon & maple potato chips. (Surprisingly, not awesome.) I got to hear Seth play the guitar and the ukelele. I got to have a perfect day at Fiiz with Conman. I had the distinct privilege of referreeing Kirk and Russell play a game of Twister. I read books. I saw Top Gun in the theater for the first time. (I wasn't allowed to see it when it came out. But now I'm 40 and can see whatever movie I want.) I took a ton of selfies in the car with Hilly. I was strong enough to let both Hazy and Monson sit on my lap. I taught my family about the joy of homemade pineapple ice cream, and Spencer and I made up a recipe for homemade almond joy ice cream. I got to sleep in Grammy and Grandad's house. I took Julie's girls to see Inside Out. (Loooooved it!) I was able to stay up late and wake up early for a solid week while I was on the road. I ate at Cheesecake Factory. (Twice. Once, I even had cheesecake.) I decided to cater my funeral dinner. I did some research and discovered that one bag of Sun Chips (the small size from the gas station) is over 20% of my daily recommend fiber intake. I ate a crap ton of salmon. (And it was awesome. Every time.) I worked from the Camelback office one day this month. I watched all of Covert Affairs and the first four seasons of The Good Wife. (Again.) I had a heart to heart with Dr. H - and he complimented me on my new hairdo. (Three times in five minutes.) I went to the movies and I ate a lot of theater popcorn. I got stuck in multiple rainstorms. I grew almost an inch of hair on my head. I got matching pink mani/pedis with Hillary. I laughed and I cried. I told a bunch of people that I love them, and I meant it every time. I got to hold a hedgehog. I drove my car to Utah and I flew home on an airplane.

And there's a whole bunch of other stuff that's written on the calendar that I didn't mention.

Like I said, it's been a great month.

I am tired, but I am happy.

And (maybe) next month I'll get around to posting pics of all (or at least some of) that awesomeness. For now, just know that I am doing my level best to live. Every day.

Life is just a bowl of cherries

I'm sitting in bed this morning, watching Covert Affairs (I'm in season five, so it's almost over) and eating a bowl full of of cherries, feeling a little upside down and inside out about this day, when I thought of this old Mary Engelbreit picture.

I'm going back to work this morning. It's very part time, and I'll be doing admin projects for the CFO rather than going back to my department and working with lending. I am incredibly grateful that the bank has been so supportive of me wanting to reinstitute some normalcy in my life, and I'm looking forward to figuring out if my brain still works. (Chemo brain is the bane of my existence. It's better than it was, but I still get surprised by my memory lapses and/or the inability to find the right word(s).)

I'm excited to go back to work. I'm also a little nervous about how my body will react to getting put back on a schedule. It's going to be so great to see my work friends again on a regular basis. That said, I'm a different version of me than I was just six months ago, and I can't help but wonder if/how things will/could be the same.

Like I said, I'm feeling a little upside down and inside out. Grateful, excited, invested, anxious, concerned, curious, committed. I am all of those things, and some more that I can't quite put a finger on. (Again, with the cursed inability to articulate.) But I am full of cherries and I am full of hope, and I've got to think that's a winning combination.

One more last...

This morning, I took my last shower before I go to Texas.

I've had so many first and lasts in the past five years, but for some reason... the showers always seem to carry significant weight.

I vividly remember the last shower before my first surgery, running my hand across my swollen and extended belly, knowing it was the last time I'd ever touch my stomach without feeling a scar.

I'll never forget how hard it was to wash my hair for the last time, knowing that in mere hours it would be cut off and packaged to send to the wigmaker.

I will always remember the shock of hot water splashing against my head the first time I showered after my hair fell out. Hot water has never felt as awesome as it did in that first baldie shower.

Coming home from the hospital after every round of chemo, I was so weak that I could barely shuffle from the car to my apartment, but I would still somehow gather up the gumption to step into my tub and take a shower. Washing the smell of chemo off my skin was more important to me than sleep, and sleep was more precious than gold.

This morning, I stood in my shower, with my forehead against the wall. As tears rolled down my face and water rolled off my shoulders, I couldn't help but think, "One more 'last'."

Because, tomorrow, my life will change. Again.

I have a return flight booked for Saturday. Only time will tell if I'll be flying home, back to the comfort of my own shower, in six days... or if they'll keep me in Houston for surgery/treatment for a few weeks or months.

I'm not even gone yet, but I'm already homesick for my own home.

Going to Houston is hard. It's what I need to do, and I'm so grateful that I'm strong enough and in a position that I can go, but it's still hard. I'm taking my own soap with me, so I'll still smell like me. But I know that I won't 100% feel like me again until I am home, taking that first shower in my own bathroom, starting the next phase of my life.

On the street where I live

May 6th was the first day that I was strong enough to walk outside after round four. May 8th was the first time I had been strong enough to walk a mile since December 23rd. (It may have been a 40 minute mile, but whatever. It was still a freaking mile!)

Every day since May 8th, I've been able to walk a mile. Some days, two. And a few days, two and a half... almost three. (These were the days that it was nice enough in the afternoon/evening for me to go on a walk. And/or the days that I was so pissed off that I needed to walk more, regardless of the weather or the fact that the skin on my toes was breaking, so I could burn off some frustration/anger at The Tumor That Will Not Die.)

That's 34 straight days of walking, kids, and 32 days of walking at least a mile.

I know that a mile isn't really all that far, but I'm here to tell you... in this body, esp after chemo, every day that I feel well enough, strong enough, to leave my little house and go for a walk around the block is a win.

I may be slow, but it doesn't matter. I can walk. Outside. And that has been such a gift.

And a few of my favorite trees are, miraculously, still in bloom. (I took this pic this morning.)

I haven't been able to wander far from home, because I often have to turn around and come back (my heart starts beating too fast, a serious hot flash hits me and I can't catch my breath, or my joints - any joint, anywhere on the way from hips down to my toes, literally... my toes - will seize), but these wiry, wispy, yellow-flowered trees on my street have been making my day. For 34 days straight.

I'm pretty sure that Texas will change things, that it will be too wet/humid to walk outside while I'm there, and most likely too hot to keep walking outside here once I get back, but for now... I can walk. Outside. Every day.

And for that, I am grateful.

A day in the life of a bald girl

I was running low on hummus and flat out of avocados here at Casa de Cancer Girl, so I made a Walmart run this afternoon. Don't worry about how I used no less than seven of those antibacterial wipes they provide to decontaminate the shopping cart before I went into the store. (Mostly because chemo has brought out the OCD in me in a way that was heretofore unimaginable, but also because when I tried to pull just one wipe, seven came out in a string.)

I made my way through the aisles:

Ensure (because it qualifies as a legitimate snack/meal in my current world, and the dark chocolate kind is NOT disgusting). Check.

More fake eyelashes (because now that my real lashes are gone, I am all over gluing fake ones on - every day). Check.

Toilet paper and Kleenex with lotion (because one can NEVER have too much of either of these things). Check.

White wheat flour, in case I ever want to make baked goods again. Check.

And then I moseyed on over to the produce aisle, where I swear I bought three of everything. (Except lettuce. Because, I swear to you, if I ever eat salad again, it will be too soon.)

As I was standing over the avocados, I had a clear view of the people walking into the store. So, I watched them. It has been interesting to me to gauge the reactions of people when I'm out in public without anything covering my head. Children generally stare and then smile or start giggling. (I love how honest kids' reactions are to the baldness!) Adults' reactions can usually be split into three different camps: the look away and then look back and then stare off into the distance (rinse and repeat... ad nauseum), the quick glance and then hard stare at anything that's not affixed to the top of my shoulders, and those who look straight into my eyes and smile. (I like the smilers the best, in case you were wondering.)

Watching the incoming traffic for a few moments, I clocked a few looky-loos, a handful of hardcore avoiders, and couple smilers. Grinning from ear to ear (human behavior fascinates me, and one of my favorite things about being bald has been the social experiment of seeing how people react to it), I went back to picking avocados out of the bin. As my head went down, I saw one of the smilers walk past me and into produce section to the right of me. He made it about 15 feet past me, and then, out of the corner of my eye I saw him stop walking. He stopped, turned, and came back towards me, asking, "Ma'am, can I give you a hug?"

Of course I said yes, but I'll be honest and say that I went into that hug wondering if and/or why he'd felt impressed to approach me, a perfect stranger with one hell of a space bubble, and ask for a hug in the middle of the produce section. But as soon as he touched me, I knew it wasn't about me. His arms went around me, and his face went into my neck. Both his shoulders and his voice shook as he held me close and told me about his mom.

Lung cancer. Stage four. She's been gone almost a year, and he misses her every day.

We stood like that for maybe five minutes while he talked about his mom. Then the grown man who had let himself fall apart in public put himself back together again and pulled away. He thanked me, wished me well and told me to keep fighting. I thanked him back, told him I was so sorry for his loss, and assured him that I have every intention of keeping up my end of this fight. And then he walked away.

I don't know his name. He didn't ask mine. Names didn't matter. Heartache and a shared experience of having cancer rip our lives apart bound us together in a way that introductions and small talk never could have.

As much as I miss my hair, I am grateful for the time that I have had without it. I have both seen and been seen differently as a bald girl. Today, I am grateful that I was in the right place, at the right time, with an obvious tell to the battle I am fighting. I never would have imagined that my bald head would be the impetus for making such an unusual, yet strong, connection with someone I had never met, and am unlikely to ever see again.

Cancer sucks, but people don't. And I love that both the universe and the people of the world keep reminding me that people are awesome, and that we have - and share - experiences in mortality for a reason.

What a day!

Holy moly... today has been one for the books. (And I'm so tired that... oh, gosh. I don't even have words.) But today is a day that must be documented. So... here we go.

It was Jo's and my Third Annual at Schnepf Farm's Peach Festival.

So what if I only brought home about 10 peaches this year? That was about all I could carry. (I'm such a weakling now.) But I ate my fill of peaches in the muddy, slippery, mess that was the peach farm. And we got a good selfie. So... WINNING!

After tromping through the mud and the muck, Jo brought me home so I could rest up for an evening of good times at Kirk's house.

I'd gone over a couple weeks ago, and Hazel said something about how she wanted to paint my head, "like an Easter egg". Hello! I can do that. So, I sent Judy to the store for some paints, and Mary had about a bazillion brushes. Done and done.

Best family dinner/art event of all time.

Monson and Hazel were the most enthusiastic (and lasted the longest... until all of the black paint was gone, and until waaaaaaaay more than the approved amount of my skin had been covered), but all of the kids got into it. Strangely, I don't have a good pic of Russell with a paintbrush in his hand, but here is the proof that he left his mark.

The rules had been ONLY ON MY BALD HEAD. Not on my face, not on my neck, not on my ears. ... Monson and Haze got a little carried away. (And Monson was having a love affair with the pot of black paint. He seriously could not get enough of it.)

By the end of the game, I looked more like a convict with prison tats than a cancer patient (esp on the left/Monson side of my head), but it's all good.

This was my favorite pic of the night. This was at the beginning, before all of the weirdness happened on the side(s) of my head.

Kirk started with writing my name (he called me Lala when he was a baby, and it's sort of stuck), Russ painted on a cancer ribbon. I don't remember which of the big boys drew that big smiley face on the back of of my head, but it was Hazel who made sure there was a red flower and a blue butterfly to be pretty.

I love these kids. I love that when they think of me, they have memories of nicknames and smiley faces and flowers, and that they would want to make sure that a cancer awareness ribbon was prominent on my bald head.

The images that followed were more of the same: writing their own names, painting a beach scene complete with palm tree under the smiley face sun, and... who the heck knows what Monsy was trying to make happen with all that black paint down the side of my neck.

I'm so glad that the kids aren't afraid of the baldness, that I was able to help them make a memory that will (hopefully) make the cancer less scary for them. ... Best. Family. Dinner. ... Ever.

May 6th

Today was supposed to be the first day of round five.

It wasn't, though.

Instead, it was the day I was able to walk for 15 minutes in the sunshine and feel the breeze on my face, on my bald little head, and in my ears. (One of the weirdest things about losing my hair has been learning how sensitive my ears are. Ha!)

Today, I was able to walk outside AND take a shower in my own bathroom AND clip my toenails with a nail clipper like a normal person. (When I'm in a chemo cycle, the clipping of nails is forbidden, because of the increased risk of infection if my skin is accidentally cut. So, I've been filing my toenails for the last three months. That's right, I've been FILING MY TOENAILS. It's been real awesome. But today, I got to cut them. Halle-freakin-lujah!) And now, I'm going to sleep in my own bed.

I'm so grateful. I still have some aches and pains and the mouth sores on the left side of my mouth still have a presence, but I was out of bed almost all day today. I was able to walk. I took a shower and put on real clothes, and I'm hopeful that tomorrow I'll have enough umph to paint my newly trimmed nails.

Today started and ended (and middled, too) very differently than I'd expected it to. I'm nowhere near what is ACTUALLY normal, but I'm a lot closer than I was even 48 hours ago. Life is good.

Eight days later

And (finally) my geography has changed. This is my current view. (Don't mind the clutter on my table, okay?)

For the first time since Thursday of last week, I was out of bed and in the living room first thing this morning. (Keep in mind that I sleep until around 9:00, so "first thing" isn't something that happens as the sun comes up.)

Today, I am grateful that I can sit in my recliner. (I flipping love this chair.) And I'm super grateful for the friends that I have, for the friends that I have always had, in my life.

Jo popped in around 10:00 this morning and stayed until she had to go get her girls from school. Shortly after she left, I received a fb email from one of my friends from ye olden days in Provo. (Ben Matthews, for those BYU 3rd warders who would recognize the name.) A few minutes ago, I was scrolling through fb and read a quote that my seminary teacher, Evan Bingham, had written in response to some comments mutual friends had made on a post he did today.

"Truly Elder Maxwell hit it right when he said, 'Recall the new star that announced the birth at Bethlehem? It was in its precise orbit long before it so shone. We are likewise placed in human orbits to illuminate. Divine correlation functions not only in the cosmos, but on this planet, too.' Elder Neal A. Maxwell, October 2002"

My mind immediately flew back in time twenty years to a conversation I had with my friend Olettie Colettie (aka: Noodlehead, aka: Colette Bird, nee Bright), in which she shared a thought from a BYU devotional she'd attended that week (paraphrased, because I don't know the source), that those people who have eternal influence on our lives are the same people who always have and who always will have eternal influence on our spirits.

I'm so grateful for all of the amazing people I've known in my life. I have more good and happy memories than, I am sure, is my fair share. The Lord has been very, very good to me, in that He has placed wonderful, supportive, funny, artistic, thoughtful, brave and kind people in my path. I wouldn't be who I am without all the friends I've had - so many of whom I still have - in my life.

I am, pretty much, the luckiest girl in the world.

The 5th Day

By now, we all know the drill... Laurie has four day chemo rounds. In on Tuesday means out on Friday.

Right?

WRONG!

It's a combination of a few things this time around: excess saline in the chemo bags led to a higher drip, later check in = later check out... But the largest culprit seems to be my body at large. I'm not making enough red blood cells (like, even when I'm in the hospital and on constant watch), so... they came in around 6:00 tonight and told me the doc wants to keep me overnight. He wants to do a hemoglobin infusion tonight, and then check my blood in the morning before he lets me go.

I won't lie. While I totally understand - and appreciate - his point of view, I just want to go home. So, I told the sweet emmissary nurses that I totally iunderstood, and then I rolled to my side and wept bitter tears that I don't even get to go home when I want to anymore.

And as I lay there, grieving my loss of a Friday night spent home in the comfort of my own bed (I know, how melodramatic am I?), I felt the sun fall onto my bed, and almost heard someone tell me to open my eyes.

And that's when I realized... there are some things that can't be seen from the comfort of my own bed, but sure as heck CAN be seen from the fifth floor of the hospital, in a picture window, no less.

I didn't get what I wanted tonight, but I did get something that I needed. (And I'm not talking about the kitchen-hours-aren't-open-so-I-have-a-dinner-of-Ensure or that extra pint of blood.)

I love sunsets. They're such a grand reminder that, while one day is ending, another is just about to begin. ... And THAT is what I needed today.

The Wizard of Oz was on to something, I think...

I went to church today, for the first time in ten weeks.

It's funny, how not being able to do something makes you really want to do it. (Insert ironic eye roll here, because going to church has never been something that I want to do on a weekly basis. ...  I mean, I don't hate it. But I also don't wake up on Sundays thinking "Hooray! Today, I get to go to church!" ... Except, today I did.)

It was so good to be back in my familiar seat. (Second row from the back, left side of the chapel, aisle seat, purse blocking the seat next to me to ensure my solitude.) It was great to sing songs that are part of who I am, and it was awesome to see people I love, and who I know love me. 

I was stopped by a couple sweet sisters on my way out of the building this afternoon, women who wanted to tell me they love me and pray for me every day, and I was reminded of one of my favorite quotes from one of my favorite movies.

It's so easy to get caught up in the day to day struggles of my life, most of which I have to face myself, due to the very nature of the battle that I am fighting. I always know that I am loved. I never feel like I am in this alone. Whether it's in the forefront or at the back of my mind, I always know that I have the most incredible support system and cheering squad in, like, the world.

But today... Today I got to feel love in a way that I don't always feel it.

And that was truly a gift.

From the familiar nods and smiles at church, to the way my sweet friend Beth just grabbed me and hugged me and then apologized, saying she didn't know if that was "allowed" (it typically isn't, but I'll make all kinds of exceptions for that girl), to an unplanned field trip to the Mesa temple visitors' center where, again, a sweet little Chilean sister missionary grabbed me by the waist (I mean that quite literally, she didn't even come up to my armpit) and hugged me, telling me that she was glad I had come to the temple, to my niece and nephews running to the door to hug me hello when I got to my brother's house for dinner tonight...

Today, I have felt love.

I mean, love has had an overwhelming presence in my life today. 

I am always aware that I have been blessed to know some of the very best people. I'll be the first to tell anyone that I have more love in my life than I can begin to understand. But today, I have felt such an incredible amount of love flowing in and out of me... all day long that it's just been... well... amazing. 

Part of me wishes all the days could be like today, but most of me knows that I couldn't handle it if they were. (Let's be real, there aren't enough tissues in the world to soak up all the happy tears. It would be exhausting... and messy.) But that doesn't mean that I'm not grateful for a day like this, totally awash in warm and fuzzies that go to my core. Because I am. So (so!) grateful.

Saturday was a special day

As I lie here in my bed, barely able to move, because I soooooo overdid it yesterday, I am grateful.

I am grateful for the pain in my abdomen, because it means I stood up too long and really used my nonexistent stomach muscles for WAY too long yesterday.

I am grateful for the pain in my upper back, because it means I was mobile in a way that I hadn't been in months.

I am grateful for my throbbing, swollen, feet. I'm even grateful that my heels and the balls of my feet look like I've been walking barefoot in a briar patch, because I earned all that rough and torn up skin by walking into and around no less than five stores yesterday.

Yesterday was a fabulous day. Today, I may be popping pain pills as soon as I leave my bed, and I may be smothering my shattered feet with Eucurin and then pulling socks over the mess in hopes that some high quality moisterizer will repair the damage I did yesterday... but I don't regret one single thing I did yesterday. It was like a Saturday in the old days. I was busy - and out of my house - for almost the whole day, and it was completely awesome.

I woke up at 7:00 and rolled out of bed, so I could get to Safeway before the bagels in the bakery had time to cool off and get hard. Mission accomplished.

I ran to Walmart, in search of the proboitic gummies that my sweet nurse, Michelle, had recommended I try to help my broken stomach along. (Listen, I'll try just about anything as a digestive aid. Oh, and I love gummy vitamins/supplements with a love that is fierce.)

Then I had to come home and put the yogurt and cream cheese in the fridge. (Oh, and sit down. Because I was exhausted from having to carry all my groceries around the store in my arms. ... It turns out that my OCD tendencies have crept right up. I was fine being IN a store, but I couldn't bring myself to touch a cart. Weird, I know. But I only fight the battles I know I can win, and I know my OCD brain better than to think it's worth it to push a cart around when I'm only buying bagels and carrots and cream cheese and yogurt. Oh, and half-priced Easter candy, for when I can eat sugar again. A girl can't have too many solid milk chocolate Cadbury mini-eggs in her cupboards, is what I'm saying.)

Then I went over to Tempe Marketplace and shopped until I was literally about to drop. (Trying clothes on was exhausting before I had the port, but now it's worse. That little bugger complicates my life in a myriad of ways, not the least of which is the tug I feel in my left breast whenever I pull a shirt onto or off of my body.  A thing which I did repeatedly yesterday, as I was in search of lightweight winter clothes because it seems that I am no longer able to regulate my own temperature. ... Good news! I found said lightweight winter clothes on clearance, just as I had hoped I would, and paid $6 a top. I love it!) Anyway, as I was checking out at Old Navy, I realized I was about to fall down and would be lucky to make it to my car. ... But I did make it to my car, and then thought to myself that going to a movie would, most likely, be every bit as therapeautic as coming home and sitting on my couch would be, so I drove over to Harkins.

I saw Woman in Gold. It was very good. Maybe a little slow in some parts, but overall, very good. And at the end of the movie, when the house lights slowly started to come up, I just sat there, looking around at the theater full of strangers, so grateful that I could be at the movies again that I couldn't help but cry. (Dang chemo and its nutty hormonal effects. I mean, I was a crier before. But now, it's on another level.)

Then I hit Target, so I could blow a gift card on some more clothes that would fit my rapidly shrinking body. ... Mission accomplished. With a side of Target popcorn, thank you very much. (That I only ate a few handfuls of and then threw the rest away, but still. THAT was awesome!)

After stopping home to drop off my wares, eat something for dinner, and lie down for a minute, lest I broke my back, I was off again.

Next stop - Baskin Robbins for a single scoop (I really do prefer a triple scoop, but the mouth sores can't handle that much sugar), and then I sat outside and read my book until it was time to meet Charity at the movies.

We saw The Imitation Game in a super packed dollar theater, and it was awesome. One of the best movies I've seen in a long time, with one of my favorite people. After the movie, we stood in the parking lot and talked about the movie - and life - until I literally could not stand for one more minute.

I hobbled to my car, drove home and somehow drug myself up the stairs and put me to bed.

Yesterday was a long day. (Sort of like this post.) But it was awesome. (Sort of like this post? ... I kid.)

I am tired, and I am sore. My body feels more broken than it has in months, and my mouth sores are monumentally worse than they were at this time yesterday. But it was worth it. Totally and completely worth it. And if I had the energy, I'd do it all over again today!

It's results day

This morning, when I was getting dressed, I reached for my polka dot top and my black skirt. On a whim, I threw my red felt hat on my head (I'd previously been thinking of wearing pink). I took a quick look in the mirror, then decided I was sassy enough that the outfit justified wearing my black peep wedges.

I walked out the door on the way to my appointment, thinking, "Nothing too terrible can happen on a day that I'm wearing this hat and these shoes!"

And it turns out that I was right!

The results came in, and.... drum roll, please... Tumor #9 is shrinking. Halle-freakin-lujah!

He didn't go down as much as Dr. H was hoping he would (don't ask me what the good doctor's expectations were... he wouldn't tell me), but the tumor did shrink by *approximately 15%.

Which, I will take. Considering my scans this winter were showing approximately 20% growth every six weeks, the fact that two rounds of chemo not only stopped the tumor's growth, but also shrunk the size by 15%, is a serious win.

The plan for now is to do another two rounds, and then do another scan six weeks from now to see what changes have occurred. (Many people have asked and I honestly don't have an answer for, ultimately, how many rounds of chemo I'll do. As long as the tumor is still there, but shrinking, my understanding is that we'll continue on the same path. If the tumor stops shrinking, we'll move to an undisclosed Plan B. ... One of the many joys in having a rare cancer? Having a treatment plan tailored to my body's whims. Good thing I have an oncologist who's a sarcoma specialist, eh?)

Round III will start Friday. As in, in two days. 

I won't lie, my body's reaction to knowing we have another round right around the corner is to tighten up every muscle in my stomach in preparation for a serious puke-fest. But my mind's reaction is, "Now that I know it's working, I can do this." (And, as we all know, I pride myself on letting my brain overrule my body.) When it comes down to the ugly, nitty-gritty, stuff in life, as long as I can wrap my head around it, I am all in. ... And, right now, I'm so happy to know that the chemo is working that I'm more than willing to subject my body to at least two more rounds.

Gulp.

So, there you have it. The tumor is shrinking. Chemo is continuing. And I'm loving modern medicine, even if (when) it makes me want to curl up in a ball and die.

*This is an approximation. Dr. H did the math half in his head and half on his phone, muttering about how I always want to know percentages, the whole time through. Since I always want to share my info with "the whole world" (his words), he wanted to make sure I understood that the number may be closer to 14. Or maybe 16. I asked him if I was approved to use the wording "approximately 15%", and he conceded that, as long as I threw the word "approximate" in there, I had his approval to "tell the whole world" that the tumor had 15% shrinkage. So, there you have it. My tumor shrunk by approximately 15%.

Wig Update #1

So...

Yesterday, I had my first skype session with my new friend wig-making friend, Merria. It was super awesome!

Since my laptop is basically a dinosaur and was created before there were cameras installed in computers, and also because I knew I was going to need another body physically present to measure my head, I went over to Jo's for the call.

Jo and Dean and Sally and Maggie and I were glued to the computer screen for almost a solid hour. It was fascinating to get to see a little bit of the backroom in a wig shop. Merria showed us what the inside of the wig looks like, the super fine lace that will line my head, and the mesh that the hair will be tied through - strand by strand. I learned that I will still be able to pull my hair into a low pony, or back in a barrette. (Hooray!) And get this, you only have to wash a wig once every three weeks. Hello! That's even better than my old 5 day rule!

Oh, and Mom... you'll be pleased (albeit very surprised, I am sure) to learn that MY HEAD IS AN AVERAGE SIZE. ... It turns out that it really was my hair that made my head appear so unspeakably large. My noggin actually measures a little on the small side of average. (Who knew?!)

Anyway... the work on the wig will start next week, and it'll take about four weeks to finish.

And the best part?! She'll be instagramming the whole process, so I can see the work as it's taking place.

I totally told her I was screen shotting her every move and would be putting it on my blog. She didn't tell me that wasn't allowed, so... I figure it's alright. Stay tuned for future pics. (It's all just so fascinating to me, and not just because it's my wig. The entire process is so precise. There are so many painstaking details, and yet... it's something that's being created, by an artist who has a vision of what it will look like in the end. It's amazing to me.)

I'm so freaking excited that the wig is actually happening (RIGHT NOW!) that I can't even tell you how happy I am.

Again, many (MANY!) thanks to all the women and children who cut their hair for me. It means more to me than I can say. Thanks for making it possible for me to get my own hair back on my head, because as much hair as I had, it wasn't enough to make a wig on my own. This is something that, literally, never would have/could have happened if I didn't have so many people who loved me enough to give me their hair. Thank you.