Hospice

I'm in hospice care. Time is short.

I want to assure you that I have a great amount of peace, and very little pain. (They're not kidding when they say Hospice is awesome about pain control!)

Mostly, what I feel is this outreaching (outpouring, outrushing... is that even a thing?) of love. I feel like I'm surrounded by love, upheld by love. I wish I could say that better, but... chemo brain + pain meds.

April 1st

In the interim of posting about health crisis, it occurs to me that I never posted about HOW I GOT MARRIED on April 1st. And it was not a joke. Steve's the best ever, because he went along with my date without batting an eye.

We'd been planning an outdoor wedding at a friend's house, but the closer we got to the date, the more obvious it became that I wasn't well enough to be discharged, so Judy enlisted the help of the hospital chaplain in securing the hospital chapel.

We were married between 10 and 10:30, on a beautiful Friday morning. I was drugged out of my mind, and weak beyond words, but it was the happiest day of my life. Not only because I was marrying the kindest, most compassionate, best man I've ever known, but also because I was able to look out and see the faces of so many friends and loved ones from so many chapters of my life. That, especially in current circumstances, has been such a blessing. I love my people.

I love my Steve.

Here are a few pics from the happy day.

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.)

Trabectedin, Round I

Okay, so... totally unrelated to chemo, but look who I ran into again in the halls of MDA! It's Gimbel and Amanda! Best surgical team, EVER! I did the math today, and... four years, three surgeries, five tumors (of nine, so Gimble holds the title for majority of tumors pulled), one kidney, one spleen, 5 cm of diaghram, I-don't-even-know-how-many-feet-of-bowel-reconstruction, one MASSIVE hernia repair, and one stragegically placed port (placed low, so I could still wear shirts with wider necklines... I get claustrophobic in high necks, and I get gaggy when I can see a port that's placed right on a collarbone, so dude did me a solid and put that puppy in low).

Gimbel is The Man! I so love him and Amanda. I love them for saving my life, for sure. But I love them even more for always treating me like a person. I've heard so many "Surgeon/God Complex" horror stories, but I'm so glad to say... I've never experienced that. Ever. With any of my surgical staff. I looooooove them!

For those of you who know how to read a blood work, report... Yes, I started chemo with low a low red blood cell count. But don't worry, when I pointed that out, I was told, "It's barely low for a normal person, and it's not "oncology" low." True story. (Love me some oncology nurses.)

What do I love? 

Acupuncture treatments DURING chemo. 

That red needle in between my eyes? It's to help with anxiety. And I am here to tell you... IT WORKS. I took an ativan at 7:00 this morning. Aaaaaaaand... that's it. I haven't felt remotely itchy or obsessive since acupuncture. (And I'm here to tell you, I had some major concerns about this 24 hour chemo drip before I got stuck. Say what you will about acupuncture being hippy dippy and weird, it has saved me. In so many ways!) I loooooooove acupuncture! 

Please allow me to introduce you to my little friend. 

This is Handy Mandy, the Chemo Clutch.

(Yup, I named her. Because I name all of the things.)

She's full of poison and has a mind of her own, so don't try to do anything off schedule or she'll screech at you. (True story.) We have a love/hate (mostly hate) thing going, but I'll be happy to upgrade that to a for sure LOVE in six weeks, if science can prove to me that packing around my own chemo in a harness-like contraption that's a combination of purse, fanny pack, backpack, and... not fashion forward in the very least... has kicked this (these?) tumor (tumors?) trash.

Remember how I had a hotel reserved for tonight, so Judy and I could stay close to the hospital and I wouldn't have to have a sleepover with the chemo in my actual house? Welllll... let's go ahead and downgrade that hotel-with-an-H to a motel-with-an-M. Fast. And let me tell you straight up that, upon arriving on the scene of the motel, I decided my life was worth more than whatever peace of mind that I thought I was buying myself with that $75 room. Luckily, their cancellation policy let me have through 6:00 PM (on the supposed night of the stay... that should have been Clue #1) to bail. So... call made to the motel, followed by website visited and online cancellation requested, and then follow up/confirmation of cancellation phone call was made to corporate, since the motel mgmnt couldn't confirm cancellation. (Methinks local management really wanted to sell at least three rooms tonight. Sadly, they're not gonna break two.)

And then I brought the chemo home for an overnight. It's really not so bad. (Don't worry about how I ran through over 3 hours just sitting at MDA, because I had to make sure I knew all of the sounds of the pump, and had to make sure I couldn't taste or smell the chemo, etc.)

This would be my **port access.

Please pause and take a look at the butterfly clip. 

Sort of cute. Also, sort of gross, since butterflies are, at best, worms with wings, and this little girl is hovering over a one inch needle, but whatev.

Now, let's pause to thank my surgical team for throwing my port down so far that it's almost like it's not even there. I won't lie, it's a little tricky to access sometimes, because it's not right against bone like they usually are, but Gimbel did a good job in burying it so I rarely see it when I'm fully clothed. God bless that man!

So, the port access is right at my t-shirt line, and then the tubing has been fed down through my shirt, so it exits right at the bottom of the shirt. This is how much I can see between my shirt and Handy Mandy. 

Not super grotesque. I can handle a couple feet of clear tubing, with a clear liquid running through it.

And this is what Handy Mandy looks like on the inside.

Slightly more grotesque. (I love the zipper that keeps all of her poison where I can't see it!)

Sort of like a bomb. ...*Maybe.

The chemo sits on one side. I'd show you the bag of gross, but... it's gross. Plus it's already strapped in, and I'm not running the risk of taking it out and then not being able to get it back in at the right angle. (Mandy would scream about that. I promise.) And the pump sits on the other side, keeping track of how much poison has been pushed, and how much is left to go.

The real beauty of Handy Mandy the Chemo Clutch is that she, A) holds the bag of poison, so I don't have to actually see it in its full grossness, but also B) the pump is held in such a way that I don't have to actually unzip Mandy to get the low down. There's a handy little velcro window that I can open to see how many ml's are left, and/or see what error message is running across, should something go wrong with the plan and Mandy starts getting vocal.

All in all, it seems that this 24 infusion/chemo sleepover isn't the worst thing ever. (That said, the sun just went down and I'm only 8 hours in. I'm pretty notorious for my night time freakouts, so anything's possible. But... so far, so good.) I think it'll be okay.

*I only know what bombs look like from watching TV. So sue me if I've seen that episode of Blue Bloods with the dirty bombs in NYC so many times that now I think all things that are black and have wires attached look like bombs. No judging.

*Yeah, they used my port instead of IVing my arm. Halle-FREAKIN-lujah! Texas had told me that the port isn't in stable tissue, so I'd need an IV for outpatient chemo. Interestingly enough, Arizona says that a port is a bazillion times (or, "much") more stable than an IV. So, port. Thank heaven! (Don't worry about how I keep talking myself off the ledge that something's going to go wrong with the theory that Mandy will scream bloody murder of she tries to pump chemo in and my line doesn't immediately move it through. Deep breaths.)

Taco Bell/Head Painting

For those of you who don't know... Taco Bell is my meal of choice on the night before I start chemo.

Every round, I've had Taco Bell as my final meal before going in to get back on the juice.

So, tonight, it made the most sense to have Taco Bell, chips and ice cream for dinner at the Woods' house. With Kirk's family. And some head painting. ... Because I am, pretty much, the coolest cancer patient around.

Call it a blank slate, a bald pallete. Whatever you want.

We call it a good time. From youngest to oldest:

Kirk

Russell

Hazel

Monson

Maggie and Hazy

Dad's getting in on the action (and Cili's taking up permanent residence... watch for her in, pretty much, every single picture from here on out through the night... girl got seriously addicted to painting my bald head!)

Dad, me, Hazel, Maggie and Sally

Jo and Kirk, taking turns

Jo takes her head painting VERY seriously! 

(Whereas, I, clearly... do not. I got mocked tonight for my need to smile for EVERY picture. Who doesn't smile when they know their picture is being taken, is what I want to know?!)

Roomie, being hilarious. ... Or, uhm... ruling. (Whatever.)

Cili

Mag

Sally

Judy

Brett

Brett and Kirk both having some good times.

Another one of C and me

I can't believe we didn't get a shot of the other side of my head! (Because, I'm telling you, it was pretty sweet. Complete with a bucket of Blue Bell ice cream, courtesy of Russelbear, and other smiley face, since Jo and Kirk were, apparently, painting the exact same thing at the exact same time.)

It was a good night. I'm full of tacos and Sun Chips and rocky road ice cream. I'm so grateful that Jo and Dean totally let me invite my family over to their house whenever I want, and I love that there's an activity that all of the kids (both those who are actually young, and those who are young at heart) can get into.

The painting of the head is something I sort of stumbled across last spring when Hazel (jokingly, or maybe not...) asked if she could paint my head like an Easter Egg. (I love kids and their crazy imaginations.) Whatever it takes to make the kids okay with the baldness... it's the greatest equalizer ever. Cili, in particular, has always had a hard time with my baldness. (Sally, too. But it's hard for C on a different level.) But tonight, she was the one person who could not get enough of painting the fuzzy head. Two words: Worth it.

Whatever I can do to make the cancer, and the baldness, more fun. Not just for me, but for everyone else in my life.

Scan Week

Yesterday was Scan Day, today is Results Day, and while I'm waiting for my docs to confer and hand me down the final word on what awaits me, treatment-wise, next week, I thought I may as well throw out some Show & Tell pics from the week.

Usually, we stay at The Rotary House  (MDA's on site hotel), but my appt dates got changed two weeks out, and they are, very much, at a full to capacity status. Sooooo... I did a little digging  (that's a lie, an email came right into my inbox on the very day that I realized we'd need a different hotel) and found that we could stay at the Wyndham for about $10 less a night than our other "cheap" Houston hotel. Done! And while these digs aren't quite as upscale as their website would have us believe them to be, the beds are awesome and the pillows are fabulous  (so much so that Judy was stripping the pillows so she could get to the tags to find out what these pillows are made of, and if/where she could buy some... I kid you not)

The view from the 12th floor is nothing short of amazing. We're in the heart of the medical plaza, so there are hospitals as far as the eye can see.

And it's even better at sunset (don't mind my reflection in the window that I was trying to take a pic out of).

This is the view to the left of our room. Hospitals and hotels, ad nauseum.

This is the view to the right of our room. Total (very upscale) residential neighborhood.

Houston is so funny. There are no zoning laws here, so you'll see houses in the middle of industrial parks and gas stations smack between million dollar homes. It's kind of crazy, but I'm getting used to it.

This morning, we met with Dr. Z, and she gave us the results of yesterday's PET/CT. It wasn't what we were hoping for, kids.

Which is to say, it's grown. Not by a whole lot  (approx 1/2 a cm in one place and almost 2 cm in another), but it's grown. And it's  gone up one point on the SUV scale.

Here's a b&w from the CT pics, showing the changes in the amorphous mass in/around my small and large intestines. (11/9/15 on top, 1/8/16 on bottom)

And here's a full color (PET) pic showing that the spot on my rib has gotten just a little bit bigger and angrier. (11/9/15 on top, 1/8/16 on bottom)

There's also a small hot spot under my bowels. It was hot there in November too  (this Nov slide doesn't show it, but there was a teardrop shaped spot on that scan). Could be another tumor, could be that mass moving from well-diff to de-diff, could be that I needed to poop. Your guess is as good as mine (or any qualified medical professional).

Sooooo... not what any one was hoping for. It's minimal growth, but it's enough that it counts. (The biggest change registers at just over 25%, so it's enough that it's classified as growth. Had it been 20% or under, it would have just been a blip on the radar. Ugh.)

Treatment options:

Stay with what I've been doing for two more rounds (there's an outside chance, but still a possibility, that the growth happened in the two weeks between the November scan and starting chemo). I've tolerated this regimen fairly well, and two more rounds would either show that it IS working (after getting a late start in Nov), or it would concretely show that these meds don't work with my body.

Try the new drug that the FDA just approved at the end of October. (I don't have the name of it at the tip of my tongue. If it really matters to you, ask Google. Either way, if we go this route, I'll know the name by the time I write another post.) Possible hitches are that the drug isn't available everywhere yet. Dr. Z put a call in to Dr. H while I was in her office. He wasn't available, so she left a message for him and assured me that after they had talked, she'd call me back.

If Banner can't get the drug in Az, I could fly to Texas every three weeks to get it. ... Or we'd go back to option one to see if maybe it'll stop progression of we give it more time.

Obviously, neither of these are awesome options. But they both beat the hell out of my third option, which is to go back on a version of doxyrubicin/andromancin (the red devil). That drug, and its wicked side effects, are, hands down, the hardest thing I've ever done in my life (and, people, there have been A LOT of hard things). If it comes down to that being all I have left, I'll do it. But I just can't willingly sign my body up for more of the drug that was so brutal that it almost killed my spirit.

Right now, I'm... eating a lot of chololate.

And it may be the most expensive part of this "vacation". Seriously, $2 a pkg for peanut M&M's is highway robbery, but since this is my drug of choice when my life goes sideways, and hard, I don't even care about the price of hotel snacks right now.

But really, I'm holding steady, just waiting for my doctors to talk it over and determine which is the best course of action for now. I'm okay with either option 1 or 2, truly. This current regimen either didn't work because it doesn't work, or it's not showing that it worked because of the timing. Doing another two rounds will tell the tale. I'd love to try option 2. It's the first chemo to get FDA approval, specific to liposarcoma. (Granted, it's technically specific to mixoid liposarcoma, but they've seen some success with de-diff liposarcoma, so I'll chance it.)

As soon as I know which way the wind is blowing, I'll post again.

As always, many thanks (and so much love) to those of you who keep me and my tumor troubles in your hearts and prayers. I can't tell you what it means to me, to have so many people aware of what is happening in my guts. I love you so much, and I am so grateful. Thanks for saying prayers that,  I am certain, have lengthened me life. And thanks for making sure I always know there's a reason to keep living. Ya'll are the very best!