Thursday, December 31, 2015

Happy New Year!

2015 was a year for the record books, but... it's over.

2015 is over. And I'm still here. 

I'm so glad.


I posted this same meme on January 1, 2015. I'd found it in a search for a new Facebook header pic. I wanted something that reflected my values (yup, I just inferred that "eat the damn chocolate cake" is a value... deal), but wasn't super New Years Resolution-y, and I found this. I loved it then, and I love it now.

And what I love, really truly love, is that I actually did most of this in 2015.

Exceptions:

- Do a cartwheel. (Insert standard broken body disclaimer here.)
- Paint each nail a different color. (But I did let little girls give me manicures, which is sort of the same thing.)
- Take a bubble bath. (If you knew the size of my bathtub, you'd understand.)
- Get on that table and dance. (Again, with the broken body. The last thing I need is to fall from a great height.)
- Pick strawberries. (But I did pick peaches and raspberries and lemons and oranges and grapes, and I think that counts. I'd have picked strawberries, too, if I'd had the option.)
- Tag a jog. (Uhm... I haven't jogged since I figured out that I didn't have to do that to get class credit in 7th grade PE. But I did take a lot of walks.)

Oh, and I didn't learn a new language.

But I ate the damn chocolate cake, and I lived. I crammed as much into this (really challenging, in so many ways) year as I justifiably could, and... and the end of the day (year), I have no regrets, no sorrows, and no disappointments.

I'm grateful for modern medicine (even as it makes me swallow my dinner, for the umpteenth time tonight). I'm grateful for doctors who have hope, for friends and family who bless and enrich my life in a myriad of ways. I'm grateful for chocolate cake, for muddy puddles, for colored pencils, for picnics and for days lived in the sun.

This year has been hard. I mean, bone-jarringly, life changingly, hard. But I am still standing. I may be leaning up against the counter, with a knee braced against the cupboard beneath me to hold me up, but I am still standing.

Here's hoping that I'll still be here, on this day, next year. And that I'll be strong enough to come out from behind the counter and stand on my own steam.

In the meanwhile, know that I love my life, even when it's hard. ( I mean, I really, really, love it. Even when it's really, really, hard.) And that I love you. Forever and always. Happy New Year!

Wednesday, December 30, 2015

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. 

And just like that...

I'm a redhead again.


Monday, December 28, 2015

A slideshow of baldy pics

A couple weeks ago, I posted that my hair was falling out. Since then, I've posted pics on social media, but have been a pretty big slacker about putting anything up here. I figure it's time to make it up to my bloggy friends who may or may not also be fb fans and/or Instagram followers.

Enjoy.

Nice Princess Leia buns for Star Wars Day, eh? (Yes, that is my actual hair. Judy had wanted to keep it for a craft, so I'd been putting it into baggies as I pulled it out. The amount of hair that I lost in the afternoon of December 17th is the bun in my right hand. The other bun is all of the hair that I'd lost up to that day, combined.)


On December 19th, I decided to see what "hair do" options I had and do a photo shoot. I would take pics and then send them to my brothers. Ha! (Kirk's been hoping for some male pattern baldness. The evenness in which I have lost my hair has been sort of a bummer to him.)

The combover is still my favorite.


As cute as all those little piggies were, I'm here to tell you... I lost a lot of hair that day, twisting my hair into piggies and then pulling the bobby pins back out.


This was pretty typical hair loss for any one of my piggy dos (and there were A LOT of them). Ha!

That night, Judy and I had Panda Express for dinner, and I had to repurpose my Leia buns into Mrs. Meers. Because it's such a natural progression from Chinese food to Chinese laundry to white slavery...

Shoo show, shoo show.


Also, POOK!

And speaking of things I got "from my mother's side of the family"... check out the similarities here.




I had snapped the pic of myself Christmas Eve morning and sent it off to my cousin Julie with a note that it was funny to me how I could see Uncle John in me, now that I'm old and gray and bald. ... She sent me back a pic of John that night. Uh, yeah. No wonder I thought that wave across my forehead looked like Uncle John's! It... uh... is exactly like his. (Those Ball genes are strong!)

I'm a little grayer than I was last week, and my hair's still getting thinner by the day. I'll give it a few more days to fall out on its own before I cut/shave it off.

What I learned last time is that leaving dead hair in my head makes my scalp itchy and weird, so I'm just letting it come out on its own. It's been wildly different this time, in that it's been almost three weeks since it started coming, and it's still not gone. (Last time, it was roughly 72 hours from start to bald.) It's really funny, because it's so thin and wispy that it mostly just stands straight on end, and it feels more like duck fuzz than human hair. But whatev. It makes me laugh every day, even if it does make me do a double take when I walk past a mirror. Pretty soon, I'll be back to bald little old me. Until then, I'm rocking the toddler bedhead like none other!

Sunday, December 27, 2015

Coincidence? ... I think not.

I woke up from my nap this afternoon, sat up in bed, saw my reflection in the clock across from my bed, and.... laughed out loud.

And then I grabbed my phone to snap a pic.





Wonder no more. 

I am, in fact, the Lord of the Underworld.

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.

Friday, December 25, 2015

It's Christmas Day

Christmas afternoon, really. 


And I'm sitting in my living room, in my corner of the couch, looking alternately at the lit tree in shadow behind me, and my puffy and swollen legs, bathed in sunlight, in front of me. 


It's Christmas. 

A different kind of Christmas, to be sure. (I don't usually sleep for 11 hours on Christmas Eve night, nor am I generally back in bed for a four hour nap within an hour of getting up.) But, still, it is Christmas. And I'm grateful that I'm here, sitting on my couch instead of lying in my bed, even if I'm just up long enough to eat some eggs and a creamcicle. I'm grateful that Judy is here with me. I'm grateful for all of the sights and sounds of the season, for all of the love that I have in my life. 

I won't lie. I wish I felt better. I wish my neck and feet and legs and arms and fingers and toes  didn't hurt from the swelling caused by Tuesday's treatment. I wish that my mouth could handle tamales, and that I felt good enough to make fudge and sugar cookies, and that I could stay awake long enough to watch a Christmas movie in its entirety.

But, all of that said, I'm feeling better than I thought I would be. And I'm certain it's because Christmas brings joy and peace to my heart, to my soul, in a way that few other things do. 

I love Christmas. I love everything about it. I love the smells and the memories and the abundance of love that is everywhere, if we but look for it. 

My limbs are swollen and sore. It hurts to keep my head up, because the skin on my neck is stretched to maximum capacity. But I'm alive, and I'm praying that the very medicine that's making me miserable today will be what keeps me around for another year.

It's Christmas. It's the day on which we celebrate all that is good in this life. I'm so grateful for this time of the year, for the unification that comes from so many people putting so much love out into the world. I'm grateful for the opportunity to celebrate the birth of my Savior, and for the reminder that He chose to come here, to live and to die, so that we might have eternal life. His was, truly, the greatest gift. 

Merry Christmas, my dears. With love.

Tuesday, December 15, 2015

It's happening


My hair started falling out last week. It was just a little bit at a time. Really, not much more than I think most people who brush their hair lose every day. (If only I was a hair brusher, to be able to relate. But alas, I am not.)

Tuesday and Wednesday were no big deal. It was just a little bit. Maybe half of what's showing on my hand in that first shot.

Thursday. ... Thursday was sort of a big deal. I ran my hands through my hair in the shower and lost an entire curl in the palm of my left hand. I stared at it, then closed my fist around it while I concentrated on breathing... And then I opened my eyes, and I opened my fist, and let that little ringlet wash down the drain, and then I cried. And cried. And cried. And cried. And yelled about the injustice of it all, and pounded my hands on the walls of my shower until my fists and my shoulders started to hurt. I stood there, sobbing, with my head against the shower wall, while the water ran from hot to cold, and until my numb legs were screaming  that they couldn't hold my weight anymore. And then I got out of the shower, stumbled into the kitchen for an Ativan, and then rolled myself back into bed. Where I continued to cry for about an hour, while Judy rubbed my back, until the drugs gave me just a little bit of control back. And then I got up and got dressed and made peace with the knowledge that it was all going to come back out.

Friday and Saturday were about the same as Thursday. I didn't lose any more big chunks of hair, but I lost four or five fistfuls, daily.

Sunday afternoon, my scalp started to change. It did the same thing last time. It's a hard sensation to describe, but it's a lot like when your hair is dirty and that makes it hurt. Like, when it sort of hurts to bend your hair at the root... Do you know what I'm talking about? Well, it's like that, but totally different. The dirty hair thing is sort a good pain. Like, it hurts, but it also feels good? Well, this... this is... not the same. It's mostly just pain. It's not horrible. It's not excruciating. But... it's a sharp, stabbing pain... like... well, frankly, it's like something is dying. (Uhm, probably because something is dying. And it's my hair follicles.) Once my scalp started to hurt, I knew it was coming.

Monday morning, I washed it (because it had been almost a week, so I figured I needed it... and I was hoping that would take some of the pain away). I lost a crap ton (or at least 4 oz) of hair in the shower on Monday, but then it sort of stayed put for the rest of the day.

Today, this morning, Tuesday... I lost probably three times the amount of hair in the shower that I lost yesterday. Enough that my steady stream of short little hairs formed a ball that clogged the pipes in my bathtub.

Steve took me to chemo this morning, and tried to play with the curls on the back of my head, as he is wont to do, while we sat in a waiting room to see Dr. H. For the first time ever, I slapped his hand away and told him he was not allowed to touch my hair in public, because it would fall out if he messed with it. He gave me a disbelieving face, so I reached up and tugged at the curls behind my left ear and came away with 20-30 hairs.And then I shrugged my shoulders at him as an explanation, and tossed that handful of hair in the trash.

After chemo, I sat and talked to Judy on the couch and pulled at my hair. I got two big piles like this out of my head before it started to slow down.


My guess is that it'll come faster tomorrow, and the next day. I think, by Friday, it'll be gone. My consolation is that my scalp won't hurt anymore, once it's let go of this hair. Also, I have that totally awesome wig in my closet. And a whole bunch of hats that people who love me - and other cancer patients - have made me. I have more scarves than the clearance section at Target. And, above all that, I am at peace with my naked head.

What happens, happens. I'd really hoped that I'd get to keep it, that it would just thin out a little and I'd keep my curls for as long as I was on this regimen, buuuuuuuut... I'm not in charge, and this chemo has a 50/50 chance of thinning vs. loss. And, it appears that I've pulled the hair loss card this time. So, be it.

But it's a real tragedy, because I am telling you... this curly hair has been great fun. And it just got long enough that I can tuck it behind my ears.


My hair line is rising, and the curls on the back of my head are just barely coming into some kind of submission. I don't love that I sort of need bangs right now, but I'm grooving on how soft and supple this dying head of hair is. Thinning it out has made it so much more controllable. It's breaking my heart a little that I'm losing it, but heck... It's going out on a really good hair week, and for that, I am grateful.

Monday, December 14, 2015

Day 22

Today is day 22. I'm officially at the end of the first 21 day round. Tomorrow, at 9:00, I go back in for more.

I've had a lot of people ask how this chemo compares to the regimen that I ran through in the spring, and there's no easy answer to that. In some ways, it's very similar. In others, it's a whole different ball game.

It's the same in that I am, again, too tired for words. Fatigue doesn't even begin to explain it. Again, I am not in control of my emotions. Feelings ride over me like waves; some times they just wash over me, and other times, they catch me by surprise and I cry so hard that I can't breathe, but I can't explain why I'm crying, because I'm so overwhelmed by the emotion that I can't define it. I'd forgotten how, when I'm neutropenic, I'm so tired that it's hard to breathe. I get so tired that it winds me to open my gummy vitamins in the morning. By the time I've opened all the bottles and pulled out all my candy vitamins, it's all I can do to make it to the corner of my couch so I can sit down, take a breath, and get some nutrition in there.

It's different, in that this time I've lost feeling in my feet (and, sometimes, a little bit in my hands). This time I have shooting pain in my feet and legs, and a headache that I can't even describe.(Throbbing. Stabbing. Excruciating. ... None of the words are good (bad) enough.) The mouth sores are different. I don't have the open sores on my gums, under my tongue, and down my throat. This time, it's more like I've burned my mouth on hot soup. Things don't taste right, but it's because my tongue feels like it's been scalded. My stomach's been all over the map with this stuff. The first dose had the (expected) outcome of constipation. The second dose caused all kinds of mayhem when it reversed my usually solid stomach to constant diarrhea. (So that's what other cancer patients feel like! It's... pardon the pun... crap.) My hair, slowly but surely, is falling out. It started thinning last Tuesday and in the last week, I think I've lost two heads of other people's hair.

That said, I do still have hair, but I don't know how much longer it'll last. ... I got out of the shower today and could see my scalp through my wet hair. So, as much as I wanted to keep my hair for Christmas, I'm pretty sure it'll be gone by the 20th. Last time, it took three days to lose my hair, and it was falling out in chunks. This time, less last Thursday, when I had a solid curl fall out and into my hand in the shower, it's a gradual affair.

It's the same, but it's different. It's a milder chemo than the last brew, but it's still wicked. I'm here to tell you, there is no "easy" chemo. But, on the off chance that it'll save my life, you know that I'll keep going.

Days are long, but weeks fly by. I can't believe that it's the middle of December already. It hurts my heart a little that it's Christmastime and I have little to no energy to enjoy it like I usually do. But, at the same time, nothing makes me as happy as having a lit Christmas tree in my living room. So, I'm choosing to be grateful that the tree is up and that the secret to keeping me happy is about as simple as pushing a green plug into the wall.

I haven't been writing as often as I'd intended to. I'm hoping that I'll feel better in this round than I did in the last (the first part of this plan is to NOT lift anything that weighs more than two lbs before I walk out the door in the morning).

Chemo itself, the infusion, isn't so bad. That part is way easier, faster, better than chemo was inpatient. It's the fatigue and nausea that hit in the 12 hours after I get home that's the worst. So consider yourself put on notice that this is probably the last time you'll hear from me for the next 36-48.

Wednesday, December 9, 2015

The view from my couch

Those of you who've been in my teeny tiny little home know that the view from my couch is pretty great.

It really is. Even when I'm too tired to sit up straight, and my feet are too swollen to let them hang off the couch, so they're propped up, straight in front of me, the view is excellent.

Esp at sunset, with the twinkle lights of the tree reflecting in the sliding glass doors.


Moments like this help me remember that time is, actually, moving on. And that there is beauty in all of the things.

This week's been hard. About 128% harder than I'd expected it to be. It's my week off chemo, so even when I was cursed with a stomach plague over the weekend, I thought the M-F part of this week would be a chemo-and-side-effects-free breeze. Uhm... false. One of the awesome consequences of being so sick over the weekend was total loss of energy, which has been making it kind of (by which I mean: torturously) difficult to breathe. (Good news! I had a chest CT/angiogram today and there are no blood clots in my lungs. Bad news, apparently I'm not breathing so great because I'm basically feeling like crap warmed over, which, it turns out, can subsist on very short and small breaths. For days on end.)

My hair started falling out on yesterday. Not in gobs or clumps, but I'm definitely losing more hair daily than I would be without the chemo.

I'm breathing better today, but still have some sharp pains when I try to take a deep breath. Last night was, by far, the scariest it's been with chest pains. I woke up this morning with minimal discomfort when I tried to breathe. (Huzzah!) By 4:00 this afternoon, the tightness was back, but I'm nowhere near where I was Monday or Tuesday nights.

The one good thing I have to report is that I haven't taken a nausea pill in 48 hours. It's a very small thing, but... it's something that tells me that the chemo is leaving my body. Hopefully, the rest of the week will just keep perking up a bit at a time. I go back in for another round of good times on Tuesday of next week.

Thursday, December 3, 2015

And thus it begins

Yeah, my feet... they're more like blocks of swollen flesh than they are like actual feet anymore.



Thank heaven for acupuncture and the fact that they aren't tingling. But man, oh man... the swelling is downright laughable!

How much do you love that you can see not only the impression of the seams in my socks, but also the little heart at the top of the band? And these socks are NOT tight, btw. My skin, on the other hand, super swollen and very tight. This should be real fun.