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.

Monday, November 30, 2015

Round V, Part II

Today, I received the second infusion of round five. It was not so bad. I've decided that outpatient chemo has its perks. Sure, by the end of those 3.5 hours, you're ready to slide out of their plastic recliner into a puddle of melted goo. By the upside is that you're in not living in a hospital bed for 4-5 days, actually experiencing the side effects while the drugs are still coursing through you.

Also, in outpatient chemo, there are snacks:




(Okay, please. There's a hospital cafeteria that lets you order off their menu at any point in time during inpatient chemo, too. But the food just seems better when it's brought around on carts and I get to harass Dan (or maybe Bob... we aren't sure what his name is) about when I'm gonna get my next treat.

Today, I had this swell chocolate Magic Cup. It's like ice cream, but packed with protein. I won't lie, it tastes like a fudgecicle and is pretty darn good. (The vanilla kind? Uhm, not so good. Just keep that in mind, should you ever be offered medically modified ice cream during a chemo drip. Go with the chocolate. Words to live by!)

I also got a fruit and nut bar, and a cup of cottage cheese with fresh berries in it, and two bottles of water, and a quinoa cookie with chocolate chips in it. It was all very exciting!

So... I've been getting a lot of questions on how this chemo is treating me. That's a hard question to answer, since last week, I just had the easier drug.

That said, last week:

*I slept for 18 hours a day for the first three days

*I experienced fine motor skill loss - I couldn't type or write (as in, with a pen... I know, because I tried) until Saturday... that was real awesome

*I had the pretty standard, around the clock, nausea thing going on (thank heaven for pills, I tell you!)

*I'm thirsty... I mean CRAZY thirsty. I'd forgotten about that side effect. I often take two 25 oz bottles of
water to bed with me and I wake up with at least one and a half of them gone every morning.

*My skin is starting to dry out, and my nail beds are loosening (it's horrific)

*I'm pretty constantly running low grade fevers, which means that my face is generally red and splotchy

*The beginning of the mouth sores. They're not horrible yet. More like a bunch of cankor sores lining my tongue. Which, yeah. Not 100% pleasant, but also not as bad as coating my tongue and gums and traveling down my throat through my entire digestive tract. So, I'll take the white and puffy tongue. All. Day. Long.

*The start of salt and other flavor sensitivity. When I eat Taco Bell Nachos, all I taste is salt. No cheese, no beans, no sour cream, no mild sauce. Just salt. It's a real tragedy!

*I've upped by standard two stool softeners and laxatives a day to three (last week) - today, I go up to four

This week, I am expecting:

All of the above, because today's dose is last week's medicine plus the harsher chemo. In addition to those fun and games:

*There's a real possibility the some/all of my toe and/or fingernails will start to lift right out of their beds. I'm real excited about that. Obviously.

*Hair loss. Possible thinning. (We're "thinking thin" here, people. As much as I didn't mind being bald. Not one bit. I'd also really like to hold onto as much hair as I can, at least some of it, if possible.) I'll know in the next ten days or so which way that cookie crumbled, and will report accordingly.

*Neuropathy. Loss of feelings in my hands and feet, accompanied by sharp pains in said otherwise numb limbs. Sounds like a real treat. I'll let you know how that goes.

*More constipation. Because while everyone else's body gets diarrhea when they have chemo... my system freezes right up. (Just one more reason to be glad you're not me. Amen.)

*Weight gain. Wahoo! Between the steroids and my body's new found love for salt absorption, I've been told not to be shocked at 3-5 lbs a week in water weight retention. My feet are already so swollen that I'm down to two pairs of flats that I can comfortably get them into. (And it's been 7 days. This should be a real blast.)

The good news is that my back injury (thanks again, Superman... there was a reason that Batman has always been my true love!) is starting to heal up. It could just be the steroids that I'm on to help my body through this round of chemo, but... my back is getting better. And this is very, very, good, because when I was down with my back, and I was so tired I was sleeping for 18 of the 24 hours, I was on my back A LOT. Which wouldn't pose such a problem, except that any weight that I put on the left side of my back aggravates that broken rib. In the last week, my body has changed so much that you can feel the difference in my ribs on my left side. They're higher and curved more, and that lowest rib is starting to jut out of my back. ... It's pretty scary.

Fingers crossed that the second dose of chemo this week works and it starts to stop the growth of that bad boy, because in the three weeks since that scan... the outside of my body has changed dramatically. I hate to think of what is probably going on inside of me.

Tuesday, November 24, 2015

Pics from Day 1

Here are a few fun pics from Day 1.

First things first... do ya'll remember Hot Nurse Brian from the Banner Gateway Oncology Floor? Because Judy sure did.

I had just gotten settled into my little outpatient chemo station, with my nurse to the left of me, Judy to the right, and Christian Cook about six feet in front of me, when Judy exclaimed, "Look, it's Hot Nurse Brian!" (It is important to note here that Judy doesn't usually call people "hot", it's just that Kimmie Curry is so influential. Also, it's a great nickname, so it stuck.)

Once Judy told me he was there, I sat up taller in my chair, and yelled out, "HOT NURSE BRIAN, is that really you?!", and he came running. It was, in fact, (obviously) him. And he remembered me. It took him a minute to place me, he said, because last time he had seen me, I had been as bald as a cucumber ("balder even", I told him), but since I was the only patient who had called him by that name, he knew it was me.

And then we had a photo shoot and made each other our facebook friends and decided that instead of outpatient chemo, we were going to call this a community college class we were taking together, titled Save Laurie's Life 101. Class meets every Monday, and we're both intent on passing. Even if we have to cheat, we're gonna ace that final and make sure I don't die. 



Done and done. Best idea/heaviest weight class I've ever had. But with Brian (and all of the other totally awesome nurses and medical staff), I'm sure it'll be fine. ... And if at first we don't succeed, we'll just move on to 202 next semester. No big deal.

About 30 minutes after the photoshoot with HNB, I had a new dude (turns out it was the part time acupuncturist) walk up to my cube and ask if I was Lauralee. Turns out my friend Cassidy, the full time acupuncturist, had seen my name on the schedule and had told Mark to look for on the 3rd floor to see if I'd be interested in having a mini-acupuncture session during chemo. Uhm, yes. Yes, I would. For several reasons:

1) Acupuncture is freaking awesome. It's hard to explain, but it has totally mellowed me out and made a lot of the stuff that's hard easier. It helps with the pain from the broken rib, it has helped A TON with anxiety, it has helped my digestive system. It's, basically, the best thing that's happened to me in the last six months. I'm in love with it.

2) Acupuncture delivered during chemo is free. (Acupuncture delivered not during chemo is the opposite of free. ... I mean $45 a treatment is fine. I will totally pay that, because it seriously helps a girl out. But free = better.)

3) I had Judy and Christian there to be able to ask questions. Oh, right, and take a pic.


The needles in the tops of my hands and forearms are part of basically every treatment I've ever had, as are the ones in the tops of my feet and inside of my ankles. They help with balancing my energy and releasing anxiety. There are some real special (and bright orange) needles in my ears to help with the pain in my lower back caused by the box full of Superman that I had no business lifting.



They didn't make the pain totally disappear, but I was about 300% more mobile after acupuncture (read: no one had to help me get out of the chair and make it to the bathroom after treatment) than I was before. And I'm feeling WAY better today than I usually do after I've totally thrown my back out like that. Also, they did provide this awesome picture for your ocular enjoyment. (Sorry about my swollen steroid face. Oh, and my crazy hair that's hiding the bulk of the needles. But hey, it's still a funny shot, so there ya go.)

All in all, day one was a success. I mean, I got a dose of poison. But I also got to see HNB and get a pic with my body full of needles. Winning, all day long. (In a totally different way than Charlie Sheen, obviously.)

You're welcome.

Outpatient Chemo

So... it has become very apparent to me (via all the texts I've received in the last 24 hours) that I've been CRAPTASTIC about communicating what was going down with the chemo in this regimen.

I'm sorry. (And I'm not just saying that because I've had so many people text me.) I've been so busy, trying to get stuff done at work and at home and at the store (let's get real, kids... I needed to buy and eat all of the goodies that I could in the two weeks between finding out that I was going back into chemo and actually going back into chemo), that blogging about it was the last thing on my mind.

So, I will attempt to catch you all up before I fall asleep (again) because I'm super high on *muscle relaxers right now.

I'm going with option one. Which is two drugs combined, but delivered (outpatient) at different intervals.

Day 1 is Gemcitabine.

It's about a 2 hour infusion. Pre-meds to help with nausea and steroids to help my body NOT react to the poison.

Day 8 is another round of Gemcitabine + Docetaxel.

This will be a 4-6 hour total infusion, between the pre-meds and the actual poison.

I'll take Dexamethasone (steroid) orally on day 7 (before the day 8 infusion to prep my body for what is coming) and on day 9 (to help my body recover from what happened). They'll give it to me intravenously on day 8 with the other good (bad) stuff.

It's a 21 day cycle. So, meds on day 1 and day 8 (a week apart from each other). After the dose on day 8, I have all kinds of fun stuff to look forward to: neutropenia (when my blood goes bad, and, historically, I get to be treated for a UTI, among other mysterious infections, because my already non-existent immune system gets thrown for a serious loop), hair loss, total fatigue, neuropathy, feet and hands swelling to twice their normal size, sleeping 18 hours a day. It'll be a real party! But then my body will get to rest (if you call all of those good times "resting") from days 8-21. And then... it'll start all over again.

The plan is the same now as it always has been. (Oh, the joys of having a rare cancer that also just happens to be chemo-resistant!) I'll do two rounds, and then have a scan to make sure it's working. If it is, we keep going. If it isn't, we'll move to something else. There are still, like, three drugs that have been known to work on liposarcoma that I haven't tried yet... so options abound. (Insert eye roll here.) Currently, I'm scheduled to be back in Texas the week of New Year's (scan is scheduled for the 29th and follow-op on the 30th... nothing like charging my insurance for all that we can in the great year of 2015!). Assuming I'm feeling well enough to travel, I'm planning on hitting up the Museum of Fine Arts on MDA's dime that weekend. (I still have a pass to let two people in FOR FREE from the last time we were there. You know that I'm gonna make full use of that. I heart free stuff!)

*I'm on hardcore muscle relaxers because I accidentally (read: stupidly) lifted something that I had no business lifting (a 10 season compilation of Smallville on dvd, for anyone who needs the details) yesterday morning. I wanted to get it out of my living room and into my bedroom, and instead of asking Steve to do it when he was here Sunday, or having Jo do it when she was here Monday morning, I picked it up my own self. In truth, I was fine lifting it, and I was fine carrying it. It was putting it down into the chair in my bedroom that did the trick. I was at exactly the wrong angle, holding exactly the wrong amount of weight, and I felt the muscles pull.

It's been real awesome. But the good news is that I haven't screamed from the pain even once today. (Wincing, grimacing, groaning and maybe tearing up a little bit? Yes. But no screaming. So, that's an improvement.) Thank heaven for muscle relaxers, the magical bendy bed, heating pads, acupuncture (I know, I'm such a dippy hippie these days... but I'm telling you, acupuncture has been SUCH an amazing thing in my life the last couple months!) and... time.

Here's hoping that, tomorrow, my back'll be even better! And then I can move on to fully experiencing chemo side effects as their own beautiful thing. (I kid. Today really hasn't been bad. Between the muscle relaxers and the nausea meds, I've just been hanging out with Judy, talking and/or catching up on Elementary. I can't complain. ... Too much.)

Monday, November 23, 2015

Here goes nothing

Blood work: 10:45
Consult with Dr. H: 11:45
Infusion center for part 1 of chemo: 12:45


The port has been accessed. My blood has been drawn. They'll have it tested in the 20 min between the draw and my appt with H.

Assuming my levels are all where they should be, I'll have poison (I mean medicine... no, I mean poison) coursing through my veins again.

Then I'll come back next Monday for part 2. (This regimen is two drugs delivered separately, at the beginning and middle of each round.)

Good times.

Thursday, November 19, 2015

Pix of this $#*@!% tumor

Last night, I tried to upload pics from my last scan, but for whatever reason it wouldn't work.  (Probably because I was so tired that I couldn't see straight, so the gods intervened and made my phone fail, so I'd turn it off and just go to bed already. ... Don't try and tell me that divine intervention isn't a thing. I know for sure that it is!)

But hey! Tonight, I got them to upload! 

Voila!

This is a pet image. (You can tell, because it's all glowy.) Please note that my brain is WHITE HOT from all the metabolic activity going on in there. Now, please note the arrow pointing to the chunk of tumor in my ribcage. That little piece of shiz had an SUV of almost 6 on my last pet - now it's at a 14. Ugh. Also, please take a look at the new glowy bit in front, close to (hopefully, part of) the amorphous mass that's covering my large and small intestines. 

Oh, and don't worry about that super glowy spot between my legs. I don't have bladder cancer or anything. I just really (REALLY) had to pee when I was in that dang tube! It's super cute, I know. 


And here we have a side-by-side, comparing what rib 10 looked like at my last scan vs last week. 

See how, on the left, you can still see the bone that is (used to be) my rib? And on the right, you can see that the entire portion of rib bone has been encased by the bloody tumor, causing a "pathologic fracture". That's right, this dang tumor has broken my rib. Awesome possum.


I super duper hate the cancer! 

But on the other hand, it's sort of nice to have an explanation for why my back hurts so bad by the end of the day. (Also, bonus: I've had multiple medical professionals compliment me on my pain tolerance in the past week. Not a compliment I'd recommend setting out to recieve, but still. It's nice to hear that I'm not a Grade A Wuss.)

I'll write more later (by which I mean: on another day, because later tonight, I won't be doing anything other than sleeping) about the chemo and stuff. But, gosh, I hope ya'll enjoyed those pics of the inside of me. 

Wednesday, November 18, 2015

Six months

Six months ago, on May 18th, I sat in Dr. H's office and he dropped the 3-6 months bomb on me.

Aaaaaaaaaand, turns out his timeline was pretty right on, as far as me not being able to live more than six months without major medical intervention.

I was in Houston last week for tests, and... this bad boy is growing like a weed. The hot spot in my back has roughly doubled in the two months between scans, and I have another spot in the front that is showed hot on last week's pet. We're not sure if that's a new tumor growing among my bowels, or if that's an indicator that the previously well-differentiated mass in/around my bowels is now progressing to de-differentiated. (As much as we all know that I do love buying myself a fancy purse for every tumor, my fingers are crossed that this isn't a new little dude. I'm hopeful that it's the mass progressing to de-diff, because that means chemo may be able to impact what is generally referred to as "the amorphous mass" on my medical reports.)

Anyhoo, the long and short of it is... It appears that my body is out to kill me again. So, I'm going back on chemo next week. (Yes, it's crappy to start chemo the week of Thanksgiving, but listen. If it'll save my life, I'll give up a pecan pie and some potatoes and gravy.)

Dr. Z gave me some options. I'll show them to you, for the medical people out there.


I'll do another post on another day that goes into more detail on the treatment plan I chose to go with (#1), but the long and short of it is that it'll be outpatient this time. Different drugs, with a different treatment plan = a different way to deliver the meds. Instead of living on the cancer floor at the hospital for a week out of every month, I'll be hooked up to an IV pole in the infusion center for about 3 hours twice a month. Just as before, the plan is two rounds of chemo then a scan to make sure it's working, then two more rounds and a scan, ad nauseum, until it stops working and then we'll go to a different chemo blend.

I've had a lot of people reach out this week, wondering what's going on and how I'm doing, because I haven't been posting as often. Well... this is what's going on. And I'm alright.

I am tired, but I'm alright. In many ways, I'm grateful for the timeline that was handed me six very short months ago, because it helped me realize, on a deeper level, how important it is to truly LIVE every day. I have had bad days, for sure, but there have been so many more good than bad. I've been able to go back to work (only part time, but it's been such a blessing to have something I can do with my time that yields measurable results), I've been able to travel and spend time with friends and family. I can't eat all of the delicious foods in the world, but I have loved the crap out being able to eat like a semi-normal human again.

I have been living and loving. Every day. For six months. I may not have written much about it, but that's because being out there, doing all of the things, took so much energy that I didn't have anything left to write with.  Maybe next week, when I'm tied to a recliner in the infusion center, I'll start going through the pics in my phone and I'll catch ya'll back up. (Big. Fat. Maybe.)

In the meantime, let the record show that I made it six months. And I'm so very glad that I did.

Monday, November 16, 2015

Monday

After dinner last night, Katie came home with me and had a sleepover. This morning, we got up and drove over to pick up Brea and Hillary for pedis.


Hillary was sooooo hoping that she'd get to pick my polish and we could be matchy/matchy again, but she had to settle for picking my base polish (red sparkles).


After getting pedicures, we walked down to Nothing Bundt Cake to get some bundletts.


And free samples. Lots and lots of free samples. (Don't judge. It was pumpkin cake.)

After getting our toes done, Katie and I came home so I could rest for a few hours before dinner that night with the gang. We met with Spencer's family and Kirk's family for an AWESOME family dinner at Charleston's. (We love their ribs. So much.)



After dinner, we had bundtletts for dessert.


I cut them into quarters, so everyone could have samples of different flavors, and Hazel and Hillary helped "serve" them to everyone at the table.



After dinner, we moseyed on over to the new Mesa Fiiz to get our caffeine on.


We heart sugar. And caffeine. ... Oh, and each other.
















Best. FHE. Ever.

Thanks, Spencer, for bringing your family to see me. It was a totally awesome weekend, capped off with lemon Nothing Bundt cake and a Pepperlada from Fiiz. Life doesn't get much better than this.