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.)

I cried the day the palm trees came down

Not really. Mostly because today is Day 21, so I'm not riding the Crazy Emotional Chemo Train today. (I actually just used that title because I like to mock The Forgotten Carols a little bit sometimes.)

But I am really kind of sad. (And I'll probably cry about it later. Right now, I'm sort of in shock.)

I woke up this morning to the sound of chainsaws running. "That's weird", I thought, "Friday is Landscaping Day. I wonder what in the crap they're chopping down now." I opened my blinds and saw... the palm trees. They were all down.

All five of them. The pool looks so naked. And there are ugly tree stumps everywhere.

My apartment complex has new owners, which means we're under new management and have new landscapers. And while I'm sure that the end result will be better than what we've had... I'm really gonna miss the raggedy palm that I used to be able to see from my bed.

The many faces of Cancer Girl

I bought a new phone last week. ... Something about how my old phone was over two years old and literally taped together in multiple places.

When I was going through my old phone, deciding which pictures to carry with me and which were going to get deleted in the switch-over, I found some pretty interesting stuff. (Don't worry, I'm not going to post the pics of the gauze sewn into my bum after the removal of the pilonidal cysts. I mean, I did keep those pics, but they aren't fit for public consumption, so they won't be making appearance on the blog - ever. ... It seems that I do have some boundaries with what I put here. You're welcome.)

Anyway, what I found were a multitude of pictures. Of trees. Of flowers. Of food. Of smart signs and magnets that have made me laugh out loud over the years. ... Of me.

Like I said, I'd had the same phone for over two years. That's a whole lot of life - and a pretty dramatic life, at that - to document.

Some of these pics, people have seen. Several of them are on Facebook, and a few of them are my standard go-to profile pics. Very few people know the dates and background stories of these pictures. I thought it would be fun to share those with you.

This is, probably, the best-known and most familiar picture of me out there. It was used as the head shot for the singles conference publicity, it was posted as the profile picture for the Saving Laurie Facebook group, it has been used by family and multiple friends at fundraisers, it was the subject of the portrait that I was gifted for Christmas in 2012.

I took this picture myself, with my phone, on one of the very few days in September 2010 that I had done my hair. I was more than halfway through radiation treatments. The burns were starting to set in. It hurt to breathe. I was in constant, excruciating pain. I couldn't keep water down without the aid of prescription strength anti-nausea medication. I was incredibly weak and very, very tired. I felt very much like death. But on this day, I had done my hair, so I took my picture.

I find it very interesting - and do not think it's a coincidence - that this picture has very literally become The Face of Cancer Girl. When this picture was snapped, my body was suffering through the side-effects of cancer treatments, but my spirit was the happiest, the most at peace that it had ever been, to that point in time. (Also, that was a ridiculously good hair day. How could I not document one of the very few days that I actually did my hair, amidst a summer/fall of ponies and bunnies?)

Another familiar shot, I am sure, to those of you who also know me on FB. This was taken in the morning on February 11, 2011. That afternoon, I found out that I had cancer - for the second time.

These were both taken in March, 2011 - the weekend before I went in for surgery to have my second tumor removed. My cousin Julie had come to spend a few days with me before I went under the knife. We went wig shopping on Friday morning, and to dinner Saturday evening with my good friends. It was a fantastic weekend, full of Pringles and mint chip ice cream, laughs and tears, and loads of Cousin Bonding.

This was taken on April 7, 2011. I had been told, prior to my second surgery, that I would have to do chemo. (See the platinum wig in the pic above. I was preparing for every possible contingency, and had wanted to wig shop before the surgery, while I still had the strength to pull wigs on and off of my gigantor head.) I had been growing my hair out - because it has always been a dream of mine to have a wig made of my own hair (I am not kidding even one little bit), and I figured that the longer it was, the better the wig would be - but the day that I found out that I didn't have to to chemo, I came home and cut a good six inches off my hair.

I'm going to fast forward through a few months now. As well all know, I had clean scans in June and September 2011, but my January 2012 scan showed a new spot just under my left kidney. I spent much of January and almost all of February last year, being run ragged between Dr. W's office and the imaging center, before I ultimately landed in my beloved Dr. H's office.

This picture was taken the week that I met Dr. H for the first time. The mind reels that he didn't fall down and say yes the very first time I asked him to marry me. (Yes, there have been multiple discussions of the matter. And he continues to just sit on his little stool and laugh at me, every single time I bring it up. Bless him.) All I can say is, that man plays a mean game of hard to get.

And this little beauty was taken the Sunday before I went in for surgery. (I'd put my hair in a side pony, and had to send a pic to a friend to show her I was trying to be cute like her.)

Please note the super-duper bright accessory colors. The dress I was wearing has elastic across the back and was stretched to the max by my ever-expanding midsection. I remember hoping against hope that the lime green and hot pink would distract the public eye from my tumor tummy.

Speaking of which... This was taken the day before I went in for surgery.

How awesome is that? I'd taken this pic right before surgery with the intent of taking a pic in the same outfit, a month out from surgery, so I could do a comparative side-by-side post. ... Too bad I forgot all about that plan until I was cleaning out my old phone and came across this little beauty. I'd take the post-surgery "after" now, but... well... after the high-calorie food festival that is the holiday season, I'm thinking that a close-up and personal side shot of my stomach really isn't in anyone's best interest at the moment.

Now, for the fun part. Would you care to guess what all of these pics have in common? (Except for maybe that lost shot of the Cancersaurus Tumor Tummy.)

Go ahead, scroll back up. Look closely. They all have one thing in common. ... And I'm not just talking about the fact they were all taken when I was actively fighting or living with cancer. (Now that I think about it, the tumor tummy pic falls under that descriptor as well.)

That's right, I'm smiling. In every blessed picture, I am smiling. And I meant it. Every time.

I survived the cancer. I like to think that I survived that quite well, thank you. And I believe - I am quite positive, actually - that one of the major contributors to my having been able to come out of that as well as I did was that I can almost always find something to smile about.

I credit my mother for my ability to find joy in the little things. I can't even tell you how often I heard "You're happier when you're happy" or "You find what you look for" come out of her when I was growing up. It may have taken me a little longer than most to learn those life lessons (I am, after all, closer to 40 than 30), but I do believe that they've finally sunk in.

Thanks, Mom, for giving me my smile.

Both through nature and nurture, it came from you.

September 12

So, here's a fun story for you...

As a preface to this story, I must disclose that this week is Go To The Doctor Week. (Seriously. Monday was the dermatologist. Today was PT. Friday is the oral surgeon.) Good times. I heart co-pays.

This story comes to you from the examination room at the dermatologist's office.

A little more of a back story... I'd noticed some new moles on my face (delightful) in the last few months. I freckle really easily, and have several moles that are flesh colored, so I didn't think of much of it when the first one popped up on the point of my chin in the spring. A few weeks before surgery, I noticed another one cropping up in the middle of my chin. About the time I went back to work, I realized that I had another bump coming in just under my left eyebrow.

Uhhhhh... Time to call the dermatologist.

I mean, I get new freckles all the time, but moles are a little different and these were all coming up really quickly in a relatively short period of time. So, almost a month ago, I called the skin doctor. The soonest he could get me in was this week. (Who would have thought that dermatologists would be so busy, to be booked a month in advance?! Must be that Arizona sun that's so damaging to our skin. Note to self: possibly look into finding a dermatologist to love and marry. They may be in even higher demand than cancer doctors.)

Monday, I went in, filled out all the new patient paperwork and was seated in an exam room within ten minutes. (Holy fastest waiting-room-to-exam-room turn time ever, Batman!)

A sweet little old man doctor came in and asked me why I'd come in. He was a little entranced... or maybe concerned is a more apt word... with how many moles I have. Seriously, he could not keep his hands off my face and my arms. (It was more than a little reminiscent of my little cousin, Megan, and her fascination with my "beautiful" moles.) He asked if it was a family trait, and which parent's line it came through. (I am sorry to report that BOTH of my parents have moles. In other words, I was doomed.)

When I explained that the reason I'd come in was the new growth on my face, he got all intrigued and started pushing on each of them, individually, feeling around to see exactly what was going on.

His first thought (I know this, because he said it out loud) was that they might be warts caused by the Human Papillomavirus. (My first thought? "HPV? Maybe I should look into getting vaccinated..." I crack myself up.) Seriously, who knew that HPV could cause wart-like growths on a person's FACE?! ... Not me, that's for darn sure!

But he kept pushing around on my chin, and corrected himself, saying that it wasn't HPV. Rather, it looked like something else. Something really unusual. Something he hardly ever saw...

My thoughts? "Welcome to my life, Doctor. I have six wisdom teeth. My right ear is noticably higher than my left. (Getting new glasses to sit right is always a treat.) I can bend my thumbs to touch my wrists. I went almost eight years without having a period - until I got cancer, and now I'm as regular as clockwork. I'm missing more than one internal organ. I have a double digit scar running down my abdomen and, unaccountably, the only lasting effect of my most recent surgery is that I am unable to lift my right arm over my head. My body specializes in the unusual." ... He would so not be the first doctor to (literally) call me a freak.

And then he proceeded to tell me that what he thought he was seeing was a virus that's common in children, but really rare in adults. It doesn't happen very often, but it seems that severe stress can bring back a virus that has lain dormant for, oh... thirty years.

Apparently, my body has been in stress (childhood-wart-causing-virus-recurrent stress, no less) over the last six months. ... Who'd have thunk?

Guess who had a wart on her chin when she was in first grade?

That's right. Me.

And it was a stubborn, ugly little thing that would not go away. They tried to burn it off. It turned black, but after a few weeks, was back to flesh-colored and wouldn't go away. They tried acid. (Literally. Acid. I have very vivid memories of my dad telling me to lie still while he dripped acid onto my face in hopes of getting rid of it that way.) Nothing. ... Eventually, they had to cut it out. I mean, cut a hole around it, through my skin under my lower lip and pull it out, cut it out. Grody.

Here's hoping these new little guys aren't as stubborn as that first demon was. (Because who can't handle the thought of having multiple scars on her face? This girl.)

The treatment plan: he froze/burned them with liquid nitrogen. Per the good doctor, I should be good as new in a week or so. (I'm sort of doubting the "week" time frame, as it's been three days and I'm just now firmly in the blistering/peeling stage ... yeah, on my face, which is ever so pretty ... that he had indicated would happen overnight.) ... I'm just hoping that these three little bumps are as bad as my "recurrent childhood virus" will get.

Honestly. My body. Its weirdness never ceases to amaze me.

Calcium - I have a serious deficit

You know, the repercussions of my childhood milk allergies never seem to let up.

The fact that I literally cannot stand up straight because my shoulders are stooped (thanks, scoliosis when I was little... that was fun). Or how about my being a little bit pigeon-toed (yeah, I had to wear braces when I was a kid - how horrible is that)? I'm pretty sure that my bone mass is already at the state of a 54 yr old (even though I'm only 34). Add to that the fact that my teeth are a in a pretty constant state of decay (even though I'm a neurotic tooth-brusher and flosser). I've had 4 (count them - 4) teeth crumble in the last 10 or so years.

...But last weekend I hit an all-time-low with the teeth - when my crown busted wide open. Yeah, I broke a crown. (Who does that?!) And when I say "broke", I mean "shattered". It's a mess, all jagged and sharp on one side, and completely gone on the other... I'm not entirely sure how that happened, since all I was doing was eating a cheese crisp and minding my own business, watching trashy tv on Sunday afternoon... but leave it to my rotten luck, it broke - in a glorious manner. (I was fishing tooth/crown shards out of my mouth for a good 20 minutes.)

And you know what that meant - I had to call the dentist. And, as it happened on a Sunday, I had to leave a message. Always a good time... You know that I rambled on and on like and idiot, and stated my case at least three times. Egads.

The good news? I got a call-back within 24 hours and now have an appointment scheduled for next Monday. Here's hoping the good doctor doesn't find anything else too dramatic going on in there. With my teeth, you never know. (The year that Dr. West put the crown in - yes, the crown that broke wide open - I had 17 cavities. Yet another embarrassing personal fact I really ought not to put out there on the www, but there you have it.)

I know, I'm a trainwreck. Seriously... who breaks a crown? And then calls the dentist and leaves a 3 minute long message about it? Good grief.

Reason #112 why it's important to marry a man who can spell

Yeah, no FREAKING kidding. Can you believe this dude? Even if he can't spell it on his own, could he not find a piece of mail to read it off of? I can't help but think that it would be easier to read the address off his utility bill than it would be to "drag her on over to Oak Street" so they could "pick her up". Unless, of course, they were living in a one room log cabin without electricity, and there would be no utility bill to be reading the address of off. (Or... maybe he can't read, either?)

*I had a tough time deciding what to title this post. It was between "Why warthogs are not house pets" and "911 calls in Arkansas", but then I thought "What if people looking for info on warthogs and/or Arkansas googled them and were directed to my blog? They might be offended... better not." - and then I went ahead and noted that here, so now they might be directed here anyway. Oh well. If I go missing, you all are hereby assigned to go on a search & rescue. I'll probably be kidnapped and then abandoned & left for dead in the backhills. What a way to go, right?

Kindred Spirits

Did anyone else see this article? Apparently there is an organization (TEAL - the Typo Eradication Advancement League) that has a couple members who've been on a cross-country mission this summer to "stamp out as many typos as we can find, in public signage and other venues where innocent eyes may be befouled by vile stains on the delicate fabric of our language". (How great is that?) I understand they've been traveling cross country this summer, removing typos found on signs along the way. They'd stopped in AZ for some R&R at The Grand Canyon, when on a day off, they came across a sign that begged to be amended. Too bad for them, they got caught this time. Even more too bad for them, this sign was a one-of-a-kind original made by an artist in the 50's and cannot be replaced, so they got into BIG TROUBLE for messing with the sign. Of course, I think the whole thing is pretty hilarious. Also, of course, I have a bit of a love thang going on for this Herson guy right now. I mean, how could I not? He's been cruising the country, taking care of excess commas and inappropriately placed apostrophes (not to mention, in his journal entry, he compared himself to Mr. Gadget, in that he simply cannot "shut it off"). I ask you all, what's not to love?

How on Earth....?

Yet another testament to the importance of having a copy editor on staff. (Mind you, I'm pretty sure that the person who wrote this caption is the same person who owned & operated the local paper, sent the copy to print, and then distributed the newspaper from behind the counter of the one & only gas station in town as he/she sold Big Gulps to fellow townspeople, so I shouldn't judge too harshly.) But honestly... this was in the paper?

Things I love about living in the big city

Panda Express.
Barnes & Noble.
24 hour stores (heck, anything open past 7:00 pm is a treat to me!)
Drive-thru mexican food.
ColdStone.
Greek food. (I'm in love with hummus these days. I know. Who knew that ground chickpeas could be so good?)


And a slew of other things. Seeing freaky cars on the freeway whilst stuck in traffic among them. Yesterday was the first time I ever saw a Smart car. I was driving along, happy as a clam, singing at the top of my lungs (yeah, I'm one of those people... the ones who head bang with their mouth wide open, singing a happy song during the rush hour drive), and I look over to my right and do a literal double take. There was half a car driving next to me. Literally, half a car. Like, the car was cut off behind the back seat and then rear wheels were just mounted to the back of the seats. Oh my, holy weirdest thing I've seen in such a long time... so I'm passing it on. Have you guys seen these things? They're so tiny... Weird.