The last 48

So... Thursday morning (to clarify, this was the middle of the night morning), I woke up, DRENCHED in sweat. Like, crazy wet. Pillow soaked through, sheets wet, even down by my feet.  It was bizarro. Because it was the middle of the night, and I was exhausted, I was able to freak back asleep, but when I woke up in the legit AM, I told Judy what had happened, and we had Instant Laundry Day. I didn't think much of the fever, outside of needing fresh sheets on my bed. Thursday was the first day I was at all hungry, so I'd had all kinds of hope that I'd turned a corner and was getting better.

You know me and me unrealistic hope in things that cannot be true. (This damn optimistic spirit can be a real kick in the pants sometimes.)

Anyway, I ate breakfast, but then got back in bed. Katie and Judy left to go shopping just after 11, and I fell asleep shortly after they left. I slept until 1 or 2:00, and woke up warm and out of breath. Did it click that I probably head another fever? Nope. I got up to make some lunch, and head to sit down to rest twice in the process of making myself a bean burrito. (Don't judge. I had to open the beans, and I have a manual can opener. It was really hard work. ... Insert eye roll here.)

After eating and showering  (a 2+ hour process, all told, because I was so out of breath that I could hardly move without winding myself), I was back in bed.

Don't worry about how I still hadn't even thought about checking my temperature.

Steve came over around 4:00. By then, I was in bed, so he came back to lie down beside me. Katie and Judy left to run another errand, and we slept until about 5:30. I had been cold, so I was under the covers and Steve was above the covers, next to me. I'd been dozing in and out for the hour he was there, and was out when he woke me up, rubbing my arm to get me to respond, because he was certain there was something wrong with me. The heat emanating from my blanket covered self had woken HIM up. He went to get the thermometer, and... yeah, there was "something wrong".

I had a temperature of 103.5.

I got out of bed, tossed the blankets, took some Tylenol and set out to prove that I could get the temp to drop.

Thirty min later, I was at 103.3. ... Not a significant drop. By now Kate and Jude were home and up to speed. They all agreed to give me another 30 min.

103.4, half an hour later.

So, at about 7:00, Thursday night, the caravan to the hospital began. (Any fevers over 100.4 send you straight to the ER when you're on chemo.)

We were in the ER for almost 8 hours, while they ran tests to find the infection that was driving the fevers, to no avail. I mean, it's good that I don't have a UTI, or a blood clot in my lungs, or the flu. But I still have these wicked fevers that keep spiking for no apparent reason. The ER doc decided to call it "Neutropenic Fevers", prescribed fluids and an intravenous antibiotic and shipped me up to the oncology floor, where I've been since about 3:00 in the AM, Thursday night/Friday morning.

Steve's spent the night with me both nights, and Judy sleeps at my apt in the night, then comes here in the day while Steve is at work.

They still have NO IDEA what's causing the fevers, but just since I've been here, my blood has gotten worse. Thursday, my platelets were at 140 (should be 700-1400, or something like that). This morning, they were at 70.

I've been on constant IV fluids to keep me hydrated, and an IV antibiotic to fight whatever mystery infection that's keeping me sick.

Really, I don't feel much worse than I usually do at home. Maybe a little more tired, because I have people checking vitals every hour on the hour through the night, so I can't get solid sleep. Definitely more cranky, because I just want to go home and get in my own bed.

I'm resigned to at least one more night, because the rule is that I need to be fever free for 24 hours before they'll let me go home, and my last fever broke in the middle of the night. It's pretty annoying, but there's nothing I can do outside of drinking a lot of fluids and not over exerting myself. So, I'm doing and not doing those two things.

Other than letting ya'll know that I'm here, with no apparent reason to be here, outside of the fevers that will not die, there's not anything new to report. Should you feel so inclined, I'm currently accepting prayers, well wishes, juju, good energy and intentions specific to keeping my fever down. And heck, if you'd like to throw in a line about how the doctors will be able to determine the root cause of all of this, that would be fine, too.

The Red Devil

And that, kids, is how *Doxyrubicin/Adriamicin got its nickname. 

It wasn't this bright a red when I got it last time, because it was diluted in saline to go over several days. This is a hardcore bolus dose (outpatient) that takes about half an hour to push. 

I only wish I'd thought to take my phone into the bathroom with me the first time I peed after the infusion, because I am telling you... the toilet looked like it was full of Hawaiian Punch! (Oh, well. There's always next time, right?)

To prevent *fingers crossed* some of the more heinous side effects I had on this drug last year, I have an infusion on Palifermin once a day for the three days preceding chemo. (I had thought it was one infusion 72 hours before chemo and one infusion 72 hours after. That was a communication snafu. It's an infusion the three days prior, then chemo, then Neulasta the day after.) So, last week looked like this: Tuesday, Wednesday, Thursday - spent a couple hours every day at MDA for the premed, Friday - three and a half hours at MDA for chemo and other associated meds, Saturday - spent about half an hour at the hospital, getting the Neulasta shot. 

Here's how the side effects have been: intense nausea, with some actual vomiting thrown in for good measure. (I've thrown up more in the last week than I have in the last year, put together. It's been such a blast.) I'm crazy tired, and unbelievably weak. I have joint pain and abdominal swelling, and yeast infections in my mouth and otherwise that predate chemo of last week, so that's been a real treat. My head hurts and my teeth hurt. I have a new pain in the front of my left ribcage that I'm still hoping it's temporary, but I've had it for almost a week now, so.... it may just be a new thing. 

The good news is that I don't have mouth sores. (Knock on wood that it's not just that they haven't shown up yet!) And that's what the premed is supposed to help with, so it looks like it's doing its job. Halle-freakin-lujah!

All in all... I'm alive. And I woke up hungry today, for the first time in a week. So, that's a win. I'm crazy tired, physically, emotionally, mentally. I'll be okay for a while, and then my brain gets foggy and I can't remember what I was doing or talking about. That's so frustrating that I don't even have words for it, but I'm hanging in there and hoping that the fog will lift just a little in the next couple weeks. 

It's not easy. In fact, it's hard. Crazy hard. And sometimes I feel like I'm living a hell that is straight up indescribable, but I think that life is worth it. So, I keep going. One foot in front of the other, one nausea pill and one percocet at a time. 

*I'm not sure what it says about me, but I'm finding a certain level of comfort in having learned that the red devil dose for sarcoma is 150x the dose given to breast cancer patients. Not to minimize the hell that is the breast cancer dose. Any chemo is poison and is going to wreak havoc on a body, but part of me is seriously proud of my sick and weak body for taking that crap like a champ. A bedridden, drugged up,  sick and weak champ, for sure. But I'm still standing. (Uhm... figuratively.)

It's almost March!

Like, tomorrow. Tomorrow, it will be March.

I have no idea where this month has gone!

Oh, wait. Yes, I do.

This month has gone to... chemo. I've been hanging out in bed, flat on my back (because something has changed inside of me and I can't lie on my right side anymore... the broken rib banned me from my left side in the fall, but the right side is a recent change, so it still makes me crazy on a regular (read: nightly) basis). And I've gone to acupuncture and the cancer shrink. And to Jo's for dinner once this month, and went to Logan's with my Crossmen the night before I did chemo again.

Oh, and Maggie was baptized. I left my house the weekend of her baptism. ... But, uh... that's about it.

So much for this "mild, with very few side effects" chemo that I've been on for the last two rounds. Ha!

I mean, this second round has been ABOUT A THOUSAND TIMES BETTER than the first round was. I had fevers and pain that I've NEVER had on anything else, and the nausea... oh my gosh, it was brutal. Homsi changed my premeds on this last round (flipped Zofran out and replaced it with Emend). Best move he's ever made in his professional life, I'm pretty sure, because I could control the nausea in that first week after the infusion... not something I could do with the first round. The pain is still... bad. (I mean, you guys. It's crazy.) And the fatigue is still... all consuming. But I upped my (don't worry... it's all legal) drug usage at the end of that first round, which has helped me sleep through the night. Being able to sleep has made a world of difference with the residual pain. So, it's still not awesome. I'm basically never NOT in pain these days. I don't love it, but the last two weeks have been monumentally better than the three before that were, so... I'm hoping this chemo is working, now that I don't think it's out to actually kill me with abdominal pain anymore.

(I like to think that the pain is the cancer dying. ... It may be a lie that I tell myself, but I don't care. I can't get it to go away, so my coping mechanism is to think that I have this new, special, pain inside of me because that's the tumor(s) last stranglehold. We'll see.)

Which brings me to... this is scan week.

Yes, I just had chemo two weeks ago. Yes, tomorrow is Day 14. ... And yes, we're flying to Texas tomorrow. On Day 14. To have a scan done on Day 15.

This was not my idea, fyi. Because this chemo is "mild, with very few side effects", Dr. Z wanted me to come at the end of my second cycle so we could know it it's working asap. (My gut feeling? She's pregnant and is due in March. I'm pretty sure I'm traveling now, so I'll be able to see her before she goes out for maternity leave. I think she's cramming as much in as she can before that baby comes. And I love her, so... whatever. Also, this will keep me on track to have chemo next week, so I'll stay in a true 21 day cycle and not go a full 21 days without any chemo in my system... like I did between the chemo I did in Nov & Dec and starting this at the end of January.)

Steve and I are flying out tomorrow morning. All of the tests and the follow-up/results appointments are on Wednesday. (Should a real winner of a day. ... Insert eye roll here. ... I'm tired, just thinking about it!) So, I'll post something Wednesday afternoon/evening with an update on whether or not this cocktail is doing something.

It's a little trippy to be doing medical travel with someone who isn't Judy, but... it was brutal to be there without him in December, and I'm not doing that again. So, he's coming. And I'm glad.

Come back in 48-72, and I'll have an update (and probably some awesome tumor pics from my scan... who doesn't love those?) on what's coming next.

Happy anniversary to chemo and me

February 4th is...

February 4, 2015 was the day I started chemo. 

Happy freakin' anniversary!

Last night, for kicks, I did the math: 466 hours. That's how many hours I've spent hooked up to a chemo drip in the last year. (And I took just over a six month break.)

It hasn't always (or... uhm... ever, frankly) been fun, but I'm still here. 

The good news? The damage to my nails from the first four rounds has almost grown out. Another month or two, and the soft and flaky part of my previously super human nails will have grown out. Woot!

The not-so-good news? This is what my skin looks like, 10 days into this new regimen. 

And that's WITH copious amounts of super expensive lotion, applied daily. My body is falling apart. Literally. 

The last twelve months have been doozies. Chemo's turned my life on edge in a way that I couldn't have possibly prepared myself for. It's been an unspeakably difficult year, but I'm grateful for modern medicine. Even as I spend our anniversary in bed with a heating pad on a broken rib, I am grateful for multiple doctors and several chemotherapies that have been successful in other patients with my diagnosis. 

Hope springs eternal that this time next year, February 4th will be chemo-free for me. That my nails and my hair and my skin will be restored, and that some version of this drug that I hate with my whole soul will have, at the very least, stopped the growth of the tumor that is currently trying to kill my body. (I mean, I'd take total eradication in a heartbeat, but... I'd also be pleased as punch if it would just stop getting worse.)

Side effects

It's always a good time when a girl starts a new chemo regimen. The foray into the unknown is such a fun adventure. (Insert eye roll here.)

I'm at the end of Day 5, and this is what I now know about this new drug:

Worst. Nausea. Ever.

As in E-VER. (Please consider this is coming from the woman who was on anti-nausea meds for months in 2010, aka: the girl who could barely keep down 4 carrots at a time during radiation.) 

Luckily, I have multiple prescriptions for nausea meds, so I'm able to overlap and take something every four hours. But man... the nausea is wicked. It's a force to be reckoned with, and is so strong that it will wake me up from a dead sleep an hour before it's time to take a pill. It's completely insane.

Besides the nausea, I've had this real awesome full body ache thing going on. Like the flu, but 52 times worse, because the aches are combined with all-over fluid retention and swelling that is out of this world. 

At the end of Day 5, I can feel my collarbone again. So, that's movement in the right direction. (My face is still swollen and puffy, and the back of my head looks like a marshmallow... again, with the fluid retention.) But I'm starting to see the swelling recede, and now I can lie on my right side, which gives me an option for sleeping.

Word on the street is that nausea is the #1 side effect for this drug, and that it gets better in the second week, with little to no side effects in the third week. (Please know that I am laughing, even as I type this, seeing as how I'm still seeing side effects from the last chemo in my daily life... and it's been more than a month since my last infusion on that regimen. But whatever.)

And just like that...

I'm a redhead again.

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!

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.

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.

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.

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.

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.

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.)

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.

Project Chia Pet - Week 3

Don't worry that it was after 10:00 PM before I thought to take my weekly Chia Pet Selfie and the bags under my eyes tell the tale of a very tired Cancer Girl at the end of a very long week...

While I am about 72 shades of tired right now, I am still THRILLED to be able to post this week's side-by-side. Why? Because, ladies and gentlemen, my hair is now long enough to comb.

Also, I have bangs.

Sort of.

Aaaaaaaand... maybe a little bit of a beard. (Ah, the hormonal imbalances caused by chemo. It's all so very sexy.) But I like to think that the eyelashes distract from my super fuzzy peach fuzz. (And if I'm wrong, I don't want to hear about it, pleaseandthankyou.)

An open letter

Chemo,

Oh, how I hate thee.

Let me count the ways.

I hate this port. I hate it with my whole heart. I hate that I had to keep a bra on 24/7 for over five months, so the weight of the port wouldn't cause pain as it pulled against "the muscle" in my left breast. (Seriously. The pain of that damn port pulling inside my breast was enough to wake me up in the night, so I slept in an underwire bra. For months. Grrrrr.) 

I hate that I have to keep this specific picture on me at all times, so I have a handy sample of the exact (and only) hypoallergenic dressing my skin can handle. I need the fabric tape, because I have adhesive allergies that result in raised, red, angry, swollen skin if a nurse or tech tried to tape me up like they would any other patient.

Oh, to be able to go back in time before I knew what chemo would mean to me...

I can remember when it didn't make me physically sick to drive past the hospital where I had my treatments administered. I remember when any IV pole I'd ever had to walk hospital floors with was filled with pain meds and fluids to keep me hydrated. Now I know what it's like to pull poison behind me, and I hate it.

Oh my gosh... this picture.

I took this lovely selfie on Day 1 of Round III.

I look like I've been hit by a bus... and this was Day 1. I had nowhere to go but down.

Oh, yes. And how about how chemo took "dry skin" to a whole new low?

I would lather my feet with ridiculously expensive lotion every night, and then pull on socks, in the hopes that there would be enough moisture in there to keep my feet in one piece overnight.

This pic was taken in May, weeks after my last chemo treatment, when my feet were very much on the mend. On the one hand, it's too bad that I didn't get a shot of my feet when they were at their worst. That said, my heel is still pretty horrific here.

How about that pink, rosy glow?

It's been three months since my last round, and I still overheat and get a weird blush from time to time, but gone is the constant tomato-face. Thank the heavens and hallelujah.

And even now, there is this.

I have these new squiggly horizontal lines on my nails.

And to add insult to injury, as my nails have grown, I've found that those hideous little squiggles have resulted in warped nails.

My nails used to be thick, strong, almost indestructible. Now they are thin, flimsy, and warped. And short. Very, very short, because I had a nail catch on something in my purse and tear down into the quick, which was the impetus for cutting them all down as far as I could, so as to avoid further rippage.

I have lost a large portion of my independence. I have lost my energy. I have lost my hair and my eyelashes and now I have lost my fingernails.

And yet... 

You are my only treatment option.

As much as I hate you, I need you. And I am trusting that at some point, I'll meet some version of you that will change what is happening inside of me.

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.

Project Chia Pet - Week 1

I've had a lot of comments on my hair growth in the last week, and today I had the thought... "What if I documented how fast it's growing by doing comparison shots every week?!"

And then I picked up my phone and took a selfie to do just that. Don't worry that I'm wearing my pink flowery robe and my glasses instead of actual clothes and my contacts here, so it's not an EXACT side-by-side.

But still... Would ya look at that?

It's darker.

And it's longer.

This time last week, I could barely grab onto the hair on the top of my head. Now, it's long enough that I can actually PULL it! ... It's very exciting. (Possibly also a little masochistic, because I yank on it about twenty times a day (uhhhh... because I can!), but mostly it's just exciting.)

My plan is to do a selfie side-by-side every Friday so all thirteen of you who read this ridiculous blog can have a visual of my new Chia hair as it comes back in. You're so welcome.

*Answers to questions I get asked all the time:

Yes, it's super soft.

I can't tell yet whether it's curly or straight.

It's very close to my original color, with maybe a little more gray mixed in.

No, I'm not shampooing it. (Some things never change, right?) But seriously, it doesn't need to be washed. It doesn't get greasy or dirty feeling. At all. If anything, my scalp is still so dry that I feel compelled to rub moisturizer into the top of my head twice a week. It's so weird.

Some days are fine, some a little bit harder

Don't mind that I'm throwing lyrics from Evita out as blog titles now. But for real, that line and "your little body's slowly breaking down" have been running through my head all day.

Having the soundtrack of many musicals committed to memory is both a blessing and a curse, I tell you.

(That said, I like to think that I am also "losing strength, not style". ... Just cracked myself up with that, btw.)

Anyhoo... today's been a day.

Not a bad one, altogether. In fact, most of it has been fine. Some moments, a little bit harder.

I woke up this morning missing my brother who lives in Utah. I went on my morning walk and thought through all the contingencies of traveling this weekend:

- I'd have to take Allegiant to get a decent fare, this late in the game, which means I'd be down to one carry-on. If I wore layers on the plane here, I could easily take the turquoise bag as a purse and avoid luggage fees.

- I have a doctor appointment Monday morning at 11:30. I'd either need to fly back Sunday night or move the appointment to later in the week. Either should be doable.

- I have dinner planned with some of my favorite girls on Saturday, but I could move that to next Friday.

- This will be my last Sunday dinner at the Woods' until... who knows when. I don't want to miss that. But, again, if I fly back on Sunday, I'll be okay. And then I won't have to move my dr appt...

I got home from my walk around 9:30. I changed out of my walking clothes (if I'm not going outside and/or I don't know someone is coming over, I'm more apt to be living in pj's than actual clothes around here) and sat down with the laptop to see what my options were. With Allegiant, I'd be able to fly in Thurs or Fri and back out Sunday for around $300. That was doable on my end, so I sent a quick text to my bro and his lovely wife to see if they'd be in town and free to hang out if I flew up. While I was waiting for their response, I got up and did a couple things around the house, had a potty break and then went to clean up the mess I'd made in the kitchen last night.

Aaaaaaand my knees buckled as I stood at the kitchen counter.

Because my body is tired, and because I've had so much more pain in my backside and my legs since I spent 5 1/2 hours in the car on Saturday.

So I sat down. And I cried.

Because it doesn't matter if the Allegiant schedule would work, or that the tickets were still relatively cheap (incredibly cheap for last minute fare, actually). What matters is that my body is broken, and that I'm currently not living in a space where my wants get to be the decisions about what I do with my time.

I take one step forward, and then my body forces me to take two steps back. (And those two steps generally lead me right back into bed.)

It's incredibly frustrating, because I feel better than I have in months, but my energy levels aren't awesome. And my tissue, my skin and my muscles, are damaged. My sad little body is breaking down. And while I have confidence that the damage caused by chemo won't haunt me forever... right now, the struggle is real.

And I have to be well/strong enough to travel to Houston in 10 days.

So, I'm not going to Utah this week.

It's a real bummer.

If I hadn't spent an hour and a half this morning thinking about it, planning a trip out in my head... I'm sure this day would have been 100% fine. (It was a beautiful morning. I had a great little walk. I made some progress on a couple craft projects. I prepared/cooked two actual meals for myself. I had a friend from work bring me lunch and then stay to talk until the sun went down. Truly, it was a good day.) But the harsh reality of realizing that I still can't go where I want to go, that I can't see all the people I want to see, that I'm not currently in a place where my own free will gets to decide what I do in this body... that made today just a little bit harder.

Houston, we have a problem...

Monday of this week was scan day. Tuesday morning, I got the results. Aaaaaaaaand... it isn't pretty. (Thus, the delay in releasing the info.) 

I was really hopeful that I'd have answers to maybe a third of my  own questions (currently estimated at 3,294) by the end of the week, but it turns out that an unusual medical condition plus the middle/end of the week before a three day weekend does not equal timeliness in returning phone calls and scheduling all the appointments this particular cancer patient wanted to have made before she needed to dump this info on the www.

That said, I've been getting a lot of questions... because the information hasn't been out there.

So, here I am, relaying what it is that I know right now.

The tumor isn't shrinking.

After four hellacious months of chemotherapy treatments, it's physically painful for me to say, but I'll say it again: the tumor isn't shrinking.

There were some changes to the shape and size of #9, which indicates that the tumor is in an active growth cycle (which is what we would need for the chemo to be effective), but for whatever reason, the chemo is no longer having a shrinking effect on the size of the tumor. Four rounds in, and per my beloved Dr. H, "we're not going to hit a home run with this one".

Gulp.

So, what does that mean? Well... I'm not really sure. (Remember the estimated 3,294 questions? Roughly 2,862 of them are very tightly wound around the following.) I was presented with three (sort of four) options on Tuesday:

1) Continue doing chemo, with the hope that it would inhibit further growth. So, basically, stay on the super awesome drip system I've been rocking since February... only now, we'd be abandoning the hope of annihilating the tumor and would, instead, be doing it with the hope that the tumor would stay the same size. 

I don't feel like this is a great quality of life option. The chemo side effects have been wicked, and unlike anything else I have ever experienced. And - here's the kicker - my health deteriorated with each subsequent round, because I was carrying around residual chemo in my system that just kept getting added upon. I can't imagine how I could possibly feel any worse than I did after round four, but I am certain that continuing treatments with these medications at these doses would completely break my (already beaten and bruised) body.

2) Try targeted radiation. Again, with the hope that it would inhibit further growth. There would be a possibility of tumor shrinkage with this option, and a certainty of wrecking my bowels.

I don't feel like this is a great quality of life option. As a woman who went through six weeks of radiation treatments in 2010, I can attest that radiation treatments - at least in your abdominal area - have lasting effects. (Basically, what I'm telling you is that my bowels are already wrecked.) I shudder to think that my digestive system could get any worse than it already is, and I worry about high radiation levels in my sad little body increasing the odds of developing a different kind of cancer somewhere else.

3) Surgery. With the caveat that Dr. G, the blessed surgeon who has saved my life multiple times, doesn't really like the thought of operating on me. This tumor is nestled between my small and large intestines and the placement of the tumor has him concerned about how much of the surrounding tissue he'd have to take out with the tumor to ensure a clean margin. To quote Dr. H (who was, I am sure, quoting Dr. G), "he doesn't know that there will be enough left to put you back together again".

I don't feel like this is a great quality of (mental) life option. (Hi. Can you say the words "colostomy bag"? Because I can't. ... Have we ever had a conversation about how I feel about fluids and hoses and not literally carrying my poop around with me everywhere I go? Because, if we haven't, maybe we should.) And coming out of surgery with a colostomy bag is very likely the best case scenario with surgery. (Insert a visual image of me shuddering in horror that this is the best case scenario.) There are inherent risks with any surgery, and this would be another big, organ-removing procedure. It would be huge, and life changing, assuming my body is strong/well enough to make it through the surgery itself.

And here's the real kicker (and the words that have been running around, wreaking havoc in my head for the last 84 hours) - if we don't do something to stop, shrink or remove this tumor, it will get big enough to cause bowel blockages that could kill me... in 3-6 months.

So, I basically have three crappy options that I hate... and a fairly tight timeline that we're working against.

Which is where option four comes sliding in as a (possible, pending insurance approval) second opinion from the sarcoma team at the MD Anderson campus in Houston, Texas.

While I have been so incredibly fortunate (blessed, really... on so many levels) to have a sarcoma specialist here at the MD Anderson in Gilbert, he is only one man working in a relatively young facility with limited resources. Going to Texas would/could open up options for different treatment plans, because there would be fresh eyes - and more pairs of them - looking at me and my special tumor-making body. 

In short, Houston will either give me more options or they'll confirm that the options I have been presented with here really are the cards I have to play. 

Which means, I'm choosing door #4. Because I don't ever want to wonder  - and I don't want anyone who loves to me to have to wonder, either - if there was an option outside of 1-3.

So now, I wait. For the phone calls to be returned, and for the insurance approval to come in. And then I'll book a flight to Texas and we'll see what they have to say.

- Deep breath. -

This hasn't been my favorite week ever, but I'm hopeful. 

I'm hopeful that my insurance company will pick up the out-of-state care. I'm hopeful that someone in Texas will have seen liposarcoma do this before and they'll know what to do with #9. I'm hopeful that there will be a treatment or surgical option available there that will turn this around. I'm hopeful that Houston will be the last stop in trying to find a solution/cure for what has been wrong with my body for the last five years.

Because I don't want to be done.

I love cake and bacon and butter and chocolate and life too much to want to be done at the age of 40. It's too soon. I want more.

So, I'm going to go to Houston next month. And I'm going pretend that it's a vacation (because everything's more fun when you call it an adventure ) while I pray that it's the answer.