Tuesday, January 26, 2016

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.)


Jenni said...

I need to try this acupuncture.

Nikki said...

Thanks for your visual rundown of the first day. I laughed at the bomb comparison and sighed at the ledges. Love you! (I am not my daughter)

Evvie Turley said...

Thank you so much for continuing to share this process with us. I look forward to reading your posts as soon as they hit my inbox! I would be there with you for every step if I could! I sure love you Laurie!