Random thoughts

Ya know why kids lisp?

I do.

It's because they're MISSING TEETH IN THEIR MOUTH!

I'm telling you, I have a real long and wet-sounding S these days. I alternate between being disgusted and being amused. ... Luckily, I have bigger fish to fry with this body of mine, so it doesn't take up too much time and energy. (Though I will say that my first order of business, once I'm done with chemo and have grown my immune system back, etc., will be to get that dang bridge put in place so I don't feel like I'm spitting out of the side of my mouth anymore!)

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What with getting my tooth pulled on Monday (oh, right... and the crown flying off my rear right molar), I was rendered unable to eat. ... Well, pretty much anything. But I especially couldn't eat sugar without incurring a lot of pain.

It was pretty awful.

By Thursday, I could seriously feel/see my chubby cheeks shrinking.

But... GOOD NEWS!

Dr. Steve put the crown back on #2 (my original crown just popped right off - didn't crack or anything) on Thursday morning, and I've been back to my sugar-eating ways for the last 48 hours.

My cheekbones are but a dim memory again. ... Just how I like them! (Many thanks to my adopted cousin Shana for sending me a pound of chocolates last week. That definitely helped me plump back up!)

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I'm still on the lookout for a wig-maker on US soil.

What I'd really like to do is use the Pantene Beautiful Lengths/American Cancer Society program. (For those of you who may not have spent hours of their lives researching such things, let me just tell you what I've learned... Most everyone has heard of Locks of Love. They make wigs for children with medical hair loss. Pantene Beautiful Lengths does the same thing, but their work benefits adult women with medical hair loss.) Pantene's site states that all their wigs are made in the US. When I called and explained my situation - I want a wig made from my own hair, and the hair of my friends and family who've so generously given of themselves to make sure I'll have enough hair to have a wig made with the hairs from my own head - I talked to a super nice kid in a call center who was enraptured by my story (who wouldn't be? ... I mean, fighting cancer for almost 5 years and is now looking at starting chemo, because nothing else seems to have worked? ... it's such a fine story!). He took my contact info and said he'd escalate my concerns to his manager and see if they could help me find a wig-maker.

Of course, he also tried to pawn me off on some celebrity wig maker who lives in Florida (and charges thousands - plural) for her work. So, we'll see.

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I honestly have NO IDEA what I'd do without Jo. Bless her heart, that woman has driven me all over creation in the last two weeks (what with the constant need for prescription pain pills, I'm risking a DUI just thinking about getting behind the wheel).

She's picked up, I swear, four of the six prescriptions I've had written in the last ten days. (I'm not kidding you. Six prescriptions. ... In TEN DAYS. And I haven't even started chemo yet. This should be fun.)

Yesterday, she did my grocery shopping while I was at work, so I could home from work and crash w/o having to set foot inside WalMart, bless her.

On no level did I expect to need so much help so soon. ... But I have. And she's been there to be my driver/errand runner. I don't know what I'd do without her.

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Judy and Dad are coming down the mountain tomorrow. We have a big family dinner (I'm calling it my "last supper", because I'm a sarcastic pig and it's fun for me to throw words like that around) at Jo's tomorrow. Kirk's coming with his family. Kate's coming down. And we'll have the usual Sunday dinner crew.

The menu?

Hot dogs
Cheetos
All manner of soda to drink
The potato salad with bacon in it
Jalepenos stuffed with cream cheese and wrapped in bacon
Jo's chocolate cake w/ marshmallow icing
The brownies with marshmallows and pb/choc rice crispies on top
Homemade ice cream (banana) with homemade hot fudge
Donuts

Because I am basically a 7 yr old boy when it comes to my favorite foods, and I want at least one bite of all the things that I love before I have to say goodbye to them.

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I am working next week.

I have the echo on Tuesday, and it's at a kind of weird time... so I won't be able to work my usual go to work before/after routine. So, I plan on taking Tuesday off. Jo will take me to the hospital for my heart test and then we're going to Kneaders for some raspberry cream pie and/or chocolate domes. (Who's kidding who? That's a definite AND, not OR situation.)

But I'm working Monday, and I'll work until noon or so on Wednesday. My appointment with Dr. H is at 1:30, and he'll admit me that afternoon. I see no reason to sit at home and worry about what's coming, when I could be productive at work. So, I'll be working next week.

It's part of my deal with the Lord. ... You know the one, where I do everything I can for as long as I can, and then I trust Him that He'll take care of the rest?...  I'm all in. (Like I have a choice. But still.)

And the start date is...

Remember how I'd emailed the good doctor to ask him if he could tell me if he'd start chemo the day he sees me next week, or if we could let it roll until the next Monday? (You know me. Always looking for a way to extend my time OUT of the hospital, so I can enjoy the crap out of my caffeinated beverages...)

Well... he emailed me back today.

 I'm choosing to think it's sweet that he doesn't want me to be confused anymore, rather than reading anything into this, like "You cotton-headed-ninny-muggins, you... would ya stop sending me emails already?!"

So, Wednesday.

Wednesday, February 4th, I start.

And while what I'd really like to do is throw a walleyed fit that I have less than seven days to go, I'm choosing to focus on the fact that I found out at the beginning of October that I had these two tumors and that chemo was the next stop. And I'm remembering that I was given the choice in October to start chemo immediately, or wait to see what a scan would say in November, six weeks later. And I'm remembering that in November, I got to choose to delay again, which gave me Christmas. And then, this month, I was able to push two weeks further than my doctor wanted to go. ... And now, through the blessing of some sweet scheduler coming down with a wicked stomach flu, I got a 48 hour delay. (A girl can drink a lot of soda in 48 hours, is what I'm saying. And since having this tooth pulled had put a serious crimp in my soda-drinking plans (Dr. Steve told me today that I should be able to drink from a straw again come Sunday), I'm super duper looking forward to having all day Monday and Tuesday to drink from a straw again. 44 oz at a time.)

So, as much, as it makes me want to puke that this will for sure, and for real, be happening in 6 measly days... I'm real (REAL) glad that I've had the last four months.

As my world turns...

Remember how, last week, when I went to the dentist, I found out that I had an abscessed molar that needed to get pulled prior to the starting of the chemo?

As I drove back to the bank after said appointment, I, apparently, tempted the universe a little when I (half-jokingly) said, "Honestly. How much worse could it get?"

Oh, my friends. It could get worse.

So very much worse.

Remember that tooth that had to get pulled? Well... it did.

And that's not ALL that happened.

Good ol' Hairless Steve (that's my dentist, for those of you who've never had the pleasure) pulled the tooth, sure. (And bless him for giving me more anesthesia than I think would be necessary to pull the tooth out of an elephant... nitrous oxide, no less than 10 pain shots, all manner of numbing gel all over my gums and into my throat BEFORE he did the shots. Bless him!) Only - and here's the kicker - after all the anesthesia had taken effect, he had me close my eyes and open my mouth (okay, so maybe he didn't ask me to close my eyes, but trust me... it was necessary) and he put something in there to crack the tooth he was going to pull, and...

HE ACCIDENTALLY BROKE THE CROWN BEHIND THE TOOTH THAT NEEDED TO BE PULLED.

Yup, that happened.

So, in addition to sporting this new, gaping, hole in my mouth... I have a back molar with an exposed nerve (okay, maybe it's not actually an exposed nerve... but it sure feels like one!) that won't let me open my mouth any further than it takes to get a spoon of yogurt in there, for fear that the air will hit that back tooth and I'll want to scream. (Oh, and did I mention that the yogurt has to warm to room temperature, or the cold makes me feel like my brain is literally going to explode from all the cold that's hitting that stupid tooth? It's been real fun.)

I mean, my dentist is awesome. He was super apologetic. He took all manner of molds while I was doped up and is getting me in first thing tomorrow to re-crown my tooth. I'm real grateful that he has the time so soon after pulling #3 that he can fix #2. But still. It bugs.

And just when I started to think that things were stabilizing (I mean... tooth pulled, check... getting crown fixed in the AM, check... port no longer makes me want to scream obscenities on a regular basis, check), I got a call from MD this afternoon.

Remember how I was told that chemo would commence 2/2?

Well, uh... guess again.

It seems that my scheduler had the flu. And was out for a week. (Poor dear.) And no one picked up her work while she was out. (WHAT THE CRAP?!)

So, now all of that doctor's patients have been backlogged. (I'd laugh, but I'd have to open my mouth for that, and what I know is that air hitting that rear molar hurts like the devil. So, I'm not laughing.) To prep for chemo, I have blood work this Friday and an echocardiogram next Tuesday. I'll have a follow-up with my beloved H on Wednesday, and (fingers crossed) I'll get a hard start date at that time.

Insert eye roll here.

The upside? I'm hoping the gaping hole in my mouth will heal enough that I can start drinking soda through a straw again. Soon!

The downside. Can I plan nothing in my life, Universe?! NOTHING?!

What I want to do is sit in a corner and cry. But, what I've learned is, crying also makes me have to open my mouth far enough that air gets in there, and that hurts. ... Like the devil.

So, instead, I'll just roll my eyes and continue to roll with the punches, and think really (REALLY) hard that it's super awesome that I get at least three extra days.

Hopefully, I'll be able to cram a couple pounds of bacon and several hundred ounces of liquid refreshment in there while I wait for my next "official" start date. ... Stay tuned.

The Port

While I'm sure there will come a day that I'll be grateful that I have this hardware in my chest (and I'm pretty sure that day will be seven days from today, actually...), today is not that day.

Nor was yesterday.

Or the day before that.

Or the day before THAT.

(You get the picture.)

I"m so grateful for modern medicine. (Both the part of it that made it possible for me to have an outpatient procedure that will make my life easier when I do the chemo thing AND the drugs that are keeping me alive - albeit metaphorically - while my body heals from said procedure.) But still.

This port has been a misery.

I'm five days in and I can finally move my right arm without burning pain, but there is still an ache and a heaviness in my chest that wasn't there before I had a wire and tubes threaded through my veins and a little chunk o' metal sewn into my chest.

Did the nurses tell me that the pain would be manageable with Tylenol the next day? Yes. Yes, they did.

Did Dr. G write me a prescription for five solid days of narcotics that led me to believe the nurses may have been a little off in their calculation of my expected pain level? Yes. Yes, he did.

So, the nurses are liars. (The Pollyanna part of me wants to call them "optimistic", but the part of me that had a tooth pulled this afternoon wants to call every single person in the medical field way worse things, so I'm settling for "liars".)

It will get better. It HAS gotten better. ... But it has hurt like the devil, and it has been a misery, mostly because the heaviness in my chest feels very much like a panic attack. And while I know it isn't a panic attack, it still feels like one, so as soon as I start to come out of my narcotic-induced-haze and feel the weight of the hardware, my body associates the weight with anxiety, and before I know it, I'm in a full force panicky vacuum. Which, in turn, makes the pain worse.

It's been a real party, is what I'm saying.

But I am super glad that I was able to get it done before I started chemo. I can't even imagine how hard it would have been to have this pain, and deal with this new weight in my chest, while my body was also reeling from the side effects of chemo.

I don't know what I'd have done without the bed that allows me to sleep like I'm sitting in a recliner, and a bottle of vitamin P to keep the pain at bay.

Some other day - a day when I'm not sitting in front of my laptop with a wad of gauze stuffed up into my mouth where my tooth used to be - I'll write about this weekend with Julie. It was super fun to have a (erm... literal, actually) partner in crime  and a designated driver on hand for two and one half days

Until then, know that I am surviving.

I have a chunk of metal in my chest where there used to be nothing, and a gaping hole in my mouth where I used to have a tooth. It seems that I've traded one big, poky, hard piece of matter for another. The good news is that I really do prefer room temperature water over most any other drinks and I can open my mouth wide enough to shove both pain pills AND stool softeners in there. It could be worse, right? ... Oh, and I'm pretty sure the sun'll come out tomorrow. (Take that, Little Orphan Annie! ... I'll "out-positive" that spunky little kid - and her little dog, too - if it's the very last thing I do!)

It takes a village

Do you see that?

There's a TV in my bedroom. AND IT WORKS!

It's been quite the journey, kids.

Quite. The. Journey.

I won't go into all the harrowing details (you'll just have to trust me when I say this has been an experience, full of all kinds of pitfalls and miraculously lucky breaks). At the end of the day (this very long and not-super-fun day, specifically), I'd just like to do a shout out to the village that brought Downton Abbey to my bedroom.

Thanks,

Jo
Rhonda
Jeff, the Dobson WalMart store manager
Jake, the Chaparell WalMart store manager
Jo (again)
Joshua
Genevra Lynn
Andrew
Christian
Jo (one last time, because she came with her husband)
Dean
Uncle Robert

You all are my favorites!

Thanks for making a reunion with Lady Mary (and her many beaus) possible.

I wouldn't have been able to watch TV from my hospital-bed-like-bed without you! (And, boy, am I glad that I can!)

When it rains, it pours

So, yesterday afternoon, MD Anderson called. Like... at 4:45. (Turns out, they'd been trying to reach me all day, but my phone was off because my aunt and uncle were here and I was hiding from reality.)

It seems that the only time Dr. G had to put my port in (prior to 2/2) was... uh... tomorrow.

That's right. TOMORROW.

Tomorrow, I'm porting up.

(Gag me with a spoon.)

For real, I am horrified at the thought of having a hole in my chest that goes right to my bloodstream. It is completely disgusting, and I start to cry and gag simultaneously every time I think about it. But that's alright. ... Because the alternative to a port is a picc line that would leave tubes sticking out of my veins. (If there's anything grosser than a port it's a picc line. ... And that's saying something!)

I kept it together through the entire call with Michelle (my favorite MD Anderson nurse), and then fell apart for about three minutes... then I gathered all my gumption back up, picked up a pen, and wrote "port - 2:00" on the calendar that's stuck to my pantry door.

Anyway... that was yesterday.

Then, today... I went to the dentist.

Remember how I really wanted to make sure there wasn't anything that needed to be dealt with before I started chemo?

Uh, yeah. Good thing I went to the dentists, kids!

I have a root canal that's gone wrong. As in, there's an abscess between #3 and #4 and my jawbone has been rotting away. (Gosh, I love it when the medical professionals in my life say things to me that make me want to throw up.)

Awesome possum.

So, next Monday, I'm having a tooth pulled. (Is it still a tooth when there was a root canal and it's mostly just a crown? I'm not sure...) That will give me seven days to get a head start on healing... before they start pouring poison into that hole in my chest that's gonna kill my immune system and wreck my ability to heal.

I also collected a handful of fun flyers when I was at the dentist about what to expect to happen to my mouth when I'm on chemo. (I'm soooo looking forward to that, btw.) I won't go into all the gory details (I'll just say that you can trust me when I say it is gory), but I will tell you that I made a stop at WalMart this afternoon to pick up two prescriptions (antibiotics to kill the abscess, pain meds for the same), some all natural mouthwash that's supposed to help my mouth stay hydrated when I'm doing the chemo... oh, and a baby toothbrush (literally, a BABY toothbrush... as in, it's recommended for babies 5-18 months) because, per the hygienist, I won't want to touch my gums with anything firmer than a sponge or a super soft baby toothbrush. For the next six months.

(I'd have bought a sponge toothbrush, too, but WalMart wasn't that fancy.)

As much as I so do not want to have a tooth pulled next week, I'm choosing to be grateful that I'm aware this is something that needed to be done before I started chemo. As much as I hate that the dang tooth extraction is going to limit my bacon and soda consumption next week, I'm really glad that it's something I can get done before I start treatments. Having that week to start the healing process will go a long way towards that hole in my mouth getting better before I start puking. (I figure that vomit cannot be good when you have an open wound in your mouth.)

I feel like my spirit and my body are at war. Again. ... Still. (Whatever.)

There are so many things that my mind wants to do in the next two weeks, but what I'm learning (again... still... whatever) is that my body has other plans. Bloody and disgusting ones, actually.

I was talking to Jo today (I had called to ask her if she can be my designated driver next week for the tooth extraction) and I told her, half jokingly, that I'm starting to wonder if my body isn't working overtime, trying to break my stubborn spirit. She laughed, then told me I needed to just give in already, so the cancer will go away. ... The thing is, I'm pretty sure it's my stubborn spirit that's kept me alive thus far.

And, once I pointed that out, she agreed that was probably true and we decided it was probably best that we not call a truce with my disturbed and broken, sick and twisted, prematurely old body.

So, it is war.

Tomorrow, I get a hole cut in my chest. ... It's completely vile and totally disgusting to me. (But, really, it'll be better than blowing veins with IV's when I'm in the hospital for my treatments. So, there is that.)

And next week, I'll have a tooth pulled. (I can only hope this will be less traumatic than when I lost my wisdom teeth and it took 6+ weeks for my jaw to heal, so I could open my mouth wide enough for a hamburger. I have big plans for eating in the next 14 days and can't bear the thought of being on a mashed-potatoes-and-gravy-and/or-soup meal plan for that entire last week leading up to chemo.)

Hooray for pain pills and an iron will, right?!

Down the rabbit hole I go...

It's official, kids.

It seems that Tumor #9 (aka: JPII and/or The Possible Remnants of #6 and/or #7) has hit a growth spurt. What was 5.6 x 3.6 cm at the beginning of October is now 7 x 6.4 cm.

Which, really, all things considered, isn't all that big of a tumor for my body.

The problem with this pesky little dude isn't so much his size, as his location and his fairly rapid growth rate.

Dude is very close to my abdominal wall. (As in, I've been able to see/feel him for about three weeks now. I'd thought he was a new hernia, what with how much he pokes out when I'm standing, but the fact that I can also feel him when I'm lying down has had me a little concerned that he was a new tumor. ... Nope, not new. Just growing.) He's sitting on top of my small intestine, which means we run a risk of the tumor growing into my bowel and creating blockages if we leave him alone in there. (I know everyone loves it when I use the words "bowel" and  "blockage". This fun and special cancer of mine is the gift that keeps on giving when it comes to poop jokes. ... You're welcome.)

Anyway... this is not a tumor that we can continue to let grow.

So, we're gonna hit it - and the rest of my body - with some hardcore poison, in the hopes of shrinking - or at least stopping the growth of - this nasty little dude.

Chemo commences Monday, February 2nd.

The good doctor wanted to start my drip on Tuesday. As in, January 21st. That's right. In four days.

I ixnayed that plan. Fast. ... Mostly because I have a dentist appointment on Tuesday that I want to make dang good and sure I keep. (I have a friend who started chemo w/o having her teeth looked at first. Insert a sad tale of woe about a cavity that turned into an abscess because she lost her immune system and her mouth couldn't keep up with what was happening to the rest of her body. As for me and my house, we believe in learning from the experiences of others. No freaking way am I starting chemo w/o knowing that all is well with my upper right molar, thanks.)

Dr. H and I wheeled and dealed our way through the next two weeks to find a start date we could agree on (I need time to have any dental work done, obviously... oh, and I'm in a dead panic about having to deal with getting a port and passing an EKG and cleaning/organizing my pantry and getting the TV in my room online and finding a wig maker and deciding whether or not I want to cut my hair off before my first treatment, etc.) and ended up settling on Feb 2nd. (Which was, coincidentally, the very last date he was willing to extend my timeline to. Ha!)

As much as I loathe and despise the thought that it's really come to chemo (be looking forward to future posts that will detail some of the awesome side effects I have to look forward to), this is where I am.

Not one single cell in my body wants to do what I am about to do. ... But I'm alright with it. I need to know that I have done everything I can do, and this is the next thing on that list.

I am scared out of my ever-lovin' mind. ... But come 2/2/15, I am all in.

In the meanwhile, I'm so incredibly grateful that, not only did I get Christmas... but I was able to wrangle two additional weeks out of my cancer doctor before I have to hit the chemo wall.

Here's to fifteen more days of drinking all the soda and eating all the bacon that I can fit into my misshapen belly!

I'll be taking exactly no prisoners when it comes to the consumption of pork products in the next two weeks, is what I'm saying. (Viva la bacon-loving vida, peeps!) ... Let me know if anyone wants to get together for a BLT or a Cobb salad or some candied bacon. ... Or all of the above. ... I am most definitely in an "Eat, Drink and Be Merry" phase, and any and everyone I know is invited to play along.

The 7 Day Countdown

I've been fielding texts this week from a few of you, asking the following questions... so I thought I'd do a shout out and answer them all, just in case anyone was wondering but didn't have my cell to contact me personally.

1. When do I start chemo?

Good question. ... I don't have an answer yet. I'll need to have my next scan first. Then, depending on what's going on in there, I'll either get a start date or another 6 week bye.

2. When IS my next scan, anyway?

Seven days. One week. Next Thursday. (Gulp.) And, as always, I'll get the results the following afternoon.

So, what I'm saying is... give me a week and I'll have a more definitive answer to the first question.

3. How am I feeling these days?

Listen, I'm not gonna lie to you.

I'm feeling... not awesome.

I mean, I've felt worse.

But I've also felt better.

I've had shooting pain off and on for a few weeks, but it got a little more insistent the week of Christmas. The 29th was the first day that I felt like there may be a shiv twisting its way through my left ovary. (The pain hit around 2:00 in the afternoon, and at 3:00, I had a coworker turn and look at me and say, "It must be bad... because I can SEE the pain in your eyes." ... Awesome.)

For those of you (I'm talking to you, Judy) who may not watch enough television to know what a shiv is, I've included the following:

Urban Dictionary: SHIV

www.urbandictionary.com/define.php?term=SHIV

Urban Dictionary

A shiv is a weapon made out of an commonplace object often in prison, also perhaps the origin of which is as a acronym a Self Honed Implement of Violence (SHIV). 

(You know me. Always looking for a way to increase the vocab...)

Thankfully, the shiv effect hasn't been constant. (It's been more of a day-on-day-off thing.) But there's something going on in there. And it hurts like the devil.

Give me a week and I'll know if it's a displaced organ (anything is possible with this body!), a growing tumor (or two), new hernias (always a possibility), or something else altogether. 

Meanwhile, I'm drinking all the diet soda I can (listen... I already have the cancer, what's aspartame gonna do to me at this point?!) and enjoying the crap out of all the delicious food I can eat. 

I'm hanging in there. Getting as much done as I possibly can. (That's right. I've done four loads of laundry this week. Also, I vacuumed.)

Speaking of, here's a fun little true story from my real life: I had a friend come over tonight to help me deal with the TV situation in my bedroom. Before I'd even had time to process the thought, it came flying right out of my mouth, "Ya know how pregnant women start nesting before the baby comes? ... It seems that cancer patients are hardcore nesters when they know chemo's coming. I've got to get this place set up!" Bless his heart, because dude didn't miss a beat. Just nodded, and then stayed long enough to make sure everything was fully functional. (Which may or may not have included taking apart the remote and flipping the batteries so they were right-way-up. ... I'd put them in upside down. Because I am adorable like that and all kinds of challenged when it comes to electronic devices.)

My body is a little broken, but life is good. 

I am SO looking forward to my dinner plans tomorrow night with a friend from home and her husband who is also fighting the big C. Aaaaaaand my sweet friend Genevra Lynn is coming into town and will spend the weekend with me.

The pain isn't constant... and the source of it is still unknown. It'll either sort itself out (displaced organs usually do) or it'll need medical intervention (tumors and/or hernias... story of my life). We'll see. Time will tell.

And as soon as I have answers to any/all of the three questions above, I'll fill ya'll in. In the meanwhile, know that I love you about 10,247 times more than I love my guts. (Which is to say: a lot.) 

Happy New Year!

Anyone who knows me even a little bit knows that I don't go in for New Year's Resolutions.

Never have. Never will.

But what do I go in for? ... LISTS.

Man alive, I do looooooooove a list. 

And this is a good one.

Even though I'd have to buy a new bathtub to make that bubble bath line come true (at this point in time, I doubt my bathtub could hold ME in all of my glory... let alone, me, several gallons of water, and a bunch of bubbles), I am all over making this list my mantra for 2015.

Starting, of course, with eating the damn chocolate cake. 

Happy New Year, ya'll! 

Much love!