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.



Sunday

As a continuation of Family Par-Tay Weekend, tonight we had Sunday dinner with the Woods.

It was basically a repeat of The Last Supper that we had in January, before I started chemo the first time. Chips, hotdogs, ice cream. (Listen, I know what I like. And, I'm here to tell you, what I like is a burnt hotdog with bacon jalapeno poppers, chili, cheese and mustard. ... OMG. Best hotdog ever.)


Me and the little girls in my life: Maggie, Sally, Hazel, Hilly


The Boys: Kirk, Seth, Connor, Russell


Jo and Dean are THE BEST. They not only fed me Sunday dinner, but also my entire family. Mom and Dad had driven down the mountain with Brett and Natalie, and Katie was there. We were a full house, and then some. It was the greatest.


Cili and me


RussellBear, me, Kirkey


Dad played "Velociraptor" with all of the kids.


After dinner, we had a full blown (and completely impromptu) Family Talent Show. It started with me begging Roomie to play one (or maybe three) of the songs she's written...


And then I begged Seth to play the guitar and sing. (I had to beg pretty hard, fyi. The kid isn't phased by The Cancer Card. At all. ... It's like someone's been trying to manipulate him with it for years or something. Weird.)


After Hill and Sethie sang, it was a full-on free for all. Evans kids/cousins singing along with Seth's guitar, Wood girls pounding on the piano. A Frozen sing-a-long.


It was epic.

We even got a shot of the original Evans Eight before the night was over.


All told, it was a pretty magical evening. Fabulous food, great company, some serious sing-alongs.

I soooooo love my people!

Saturday, November 14, 2015

Saturday


Spence and Brea came for the weekend, so we could spend some quality time and make some memories while I still had hair. And some measure of energy.

They drove down today, and we met at Barro's for some cousin and sibling bonding tonight.

Hilly and me.


Seth, me, Spencer. 

Note that I look like a midget between my giant nephew and his giant father.


Tyler, Con, Kirk, Hill, Kirk


Since Spence and Brea were driving through Flagstaff on their way here, they stopped and picked up Tylie. It was super fun to get to hang out with the fam and eat pizza (I had to have one slice of Kona. ... Should I be eating white bread? No. Does pineapple make my mouth blister? Yes. Is teriyaki sauce too sweet? Uh-huh. Can my stomach digest cheese? Not so much. ... But I did it. And I have no regrets. It was so freaking good!)
Kirk, Spencer, me, Tyler


Not the best lighting, but... it was, pretty much, the best night I've had in a good, long, while.

Sunday, November 8, 2015

Houston Play Day

This morning, Jan came to get Judy and me, and took us to...

The Houston Museum of Natural History.






Seriously, the best dinosaur exhibit I've ever seen. Like, anywhere. (And I've seen a lot of dinosaurs. Dennis is my father.) The way they had them set up was super cool... and freaky. Predators were in chase, sea monsters had been hung from the ceiling. The lighting was... eerie.

It was awesome.

The very best part of the exhibit was that I made friends with a docent (you know how sometimes I just randomly smile at people, esp older men, and then they want to be my friend? well.... that happened), and he gave us a personal tour of both the dinosaur and Egyptian exhibits. It was really cool to have a subject matter expert showing us the highlights of the exhibits.

But the, hands down, coolest part of the day was when he brought me over to see this bad boy. He could not have possibly known what it would mean to me, when he told me the stories of how forensic paleontologists can often tell how a dinosaur died, by looked at the bones. (Breaks in a T-Rex's tail could cause them to bleed out and die. If the fossils have scar tissue, it's an indicator that a dinosaur healed from a fight that caused tail-breakage, whereas if there is a clean break in the vertebra, and the break is high enough in the tail, it's a likely assumption that the dinosaur bled out and died. Crazy, right?) But this little dude (uhm... not actually so little, I can't remember his name, but he's a T-Rex progenitor)... he had cancer. Most likely brain cancer (they found fossilized masses inside his cranial cavity) that metastasized to the bone. If you zoom in in this pic, you'll see the calcification on his breast bone.

I sat there, in amazement. You guys, cancer has been around forever. It wasn't always diagnosed, or treated, the way it is now. But cancer has been around forever. Like, it's a prehistoric disease. Crazy. And awesome.


Also, at the Museum of Natural History...  A FREAKING FABERGE EXHIBIT! (Which is actually why we went in the first place. This girl loooooooooves sparkly stuff. And Russian Tsarists history.) Because who wouldn't want to see an exhibit compromised almost entirely of eggs and jewels made for and owned by a royal family? 

This was one of the big eggs. Like, the ones you see on TV or in movies when someone's trying to pull a heist. It was massive. Maybe 6 inches tall? (8, if you include the cherub) All real gold. All real jewels.

These big eggs were the original Faberge eggs, with the treasure within the egg. Typically crafted as an Easter gift, for women in the royal family.


These minis were about the sweetest little thing. They were about an inch in height. Same incredible details in the design that the large Faberge eggs had, but these were made to be worn as charms. (Necklace or bracelets.)


The eggs in this display are... well... "egg sized", for the most part. Some are a  little larger than a standard egg that you'd buy at the store in a styrofoam container, but most of them are, seriously, chicken egg sized. There were three or four panels like this against one wall.


And here's a close up of some of the eggs, so you can see the detail.

I swoon.


And... did you know? Faberge made more than eggs. Like, say... jewel encrusted opera glasses.


Custom jewelry.

This is a pendant created for Alexandra Romanov. 


Cigarette cases and snuff boxes.


It was, seriously, so awesome. I love museums, like, with my whole heart. So, when I found out that the hotel had free/serious discounts for all the museums in the Houston area, it was my heart's desire to spend as many hours as I could stand walking the halls of a museum. ... Too bad I only lasted about 25 minutes standing, but Jan was a helper and went out and got me a wheelchair. All told, we were in the museum for about three hours. I made friends with the security guard at the Faberge exhibit, who told me which of the eggs was a counterfeit purchased by the collector in haste, and caught by the museum's authentication process. (It's the purple one in the top right corner of the multi-pic.) The materials were authentic, but it was a recent forgery -- not a treasure that was 100+ years old. The collector didn't take issue, since the relative value of the egg was close to the price they paid. (Maybe not the "deal" they thought they were getting, but they weren't totally swindled, either.) They keep it in the exhibit for the story.

Man alive, I love my life. I'm so glad we traveled yesterday for my appointments tomorrow, so today could just be a play day. I'm so far past tired that I can't... even. But today has been so great.