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! 


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.

Tuesday, October 20, 2015

Five months

October 19th was my five month mark. I spent the day doing this:

(Not pictured is the 8 hours I spent in the car with Jo. Good thing we like each other so much, because GPS thought that was going to be a 4.5 hour drive. Clearly, GPS under (or maybe over?) estimates how often two 40 yr old women need to stop for bathroom breaks. And snacks.)

And considering that I'd spent the weekend in Vegas doing this

And the weekend before in California, doing this

I say that I'm still winning.

I'm tired and I'm glad to be home in my own bed, and I'm really looking forward to staying here for all of the nights until I go back to Houston  (11/7), but I am ofiicially over five months into the anticipated 3-6. I am tired, but I am happy. 

Oh, and winning. 

Wednesday, October 7, 2015

The last 36

Initially, I was going to title this The Last 48, but then I realized that would imply that Monday night was rough, and that just isn't (wasn't) the case.  Monday night, I had Target popcorn for dinner. Monday night was awesome. That said...

The last couple days have been rough.

It started with my port flush yesterday. Combine a (foolish) nurse (who had, clearly, never had the pleasure of dealing with yours truly) who felt the need to warn me that that the hospital changed needle providers and this stick was gonna be worse than usual with a crippling anxiety disorder that automatically turns any mention of needle-induced pain into a high speed come apart... and all sorts of ugliness ensued. 

She was right. It did hurt more than usual. Not that she was the nurse who ended up sticking me. She sent in a replacement, real quick, after I asked her "Who would say that?!", followed by, "I'm going to have to ask you to stop talking and just do your job."

(Right now, any and all of my nurse friends are lifting their eyes to heaven and hoping they never have anyone the likes of me as a patient, I know.)

Anyway, the port was the beginning. Yesterday, around 11:00, I had the first of what would turn out to be... I don't even know how many, because I've lost count, total meltdowns. (I'm talking, repetitive, rolled up in a ball, crying so hard that my eyelids are swollen, meltdowns.)

It'a been a rough 36.

Mostly, because I'm in more pain than usual, but between the pain and stress, it's a vicious cycle.

The tissue surrounding my port is always tender for a few days after it's accessed, and I had not one, but two nurses poking and prodding me yesterday. 

The pea in my back is aggravated, because I felt crappy yesterday and spent much of the afternoon lying or sitting in an unusual position, trying to alleviate the pressure near my port.

This caused some (by which I mean: a crap ton of) back pain that was exacerbated by me spending too much time hunched over a laptop. 

Throw in stessors in every single area of my life this week, and I now have pain in my neck and between my shoulder blades that's making it painful to breathe. 

Like my body itself isn't enough to drive a girl to drink, the effect that stress has on my body anymore just makes me want to rock in a corner  (or curl up in the fetal position and cry... tomato/tomahto).

And while I've been lying here in bed all day (not really all day - I got home from work at 12:20, so it's really "only" been seven hours), I've been thinking that (feeling like) something needs to change. 

I don't know what that change is (who's kidding who? let's go ahead and upgrade that to what those changes - plural - will be), I do know that something's got to give. Soon.

And while I know that sounds like I'm being crazy dramatic at the end of a couple really hard days, what I know is that I need a change in the way the wind is blowing. (You know I do love me a solid Mary Poppins reference.) 

Fingers crossed that there's more than the fall weather coming. Maybe there really is a major change on the way. 

I hope so, because the last couple days have been hard. I mean HARD.

I'm really grateful that I don't have hard days really often, because man... when I do, they're brutal. 

Wednesday, September 23, 2015

First in a series

I've been getting a lot of questions lately about how I'm feeling, what I'm doing with my time, why I'm choosing to do that with my time, etc., and while I'm doing my best to answer these questions, individually, as stuff comes in... I figure that not everyone feels like they can ask these questions. (And we all know that I have basically zero pride and will totally overshare when it comes to the details of my life.) So, I've decided to devote a few blog posts to hitting the high/low lights on a few different topics.

First up...

I've been getting asked A LOT if I'm back at work, mixed with why I'm back at work.

Yup. I sure am. I went back on a super part time basis at the end of June. Because I wanted to. (You heard me. ... I literally asked for it.)

When I went to Texas in June and was given those first two months chemo-free, one of my first calls was to the CFO, to ask if we could meet and discuss the possibility of me either returning to work or being armed with a laptop that I could bring home. We had dinner that week, and I was at work bright and early the next Monday.

I started at two hours a day (yup, ten hours a week... told you it was very part time) and gradually worked my way up to a full part time week of 20 hours. ... I keep trying to go over four hours a day. Every once in a while, I'll hit five hours, but then the next day, I feel like death and get pushed back to 3 or 3.5 hours before I know I need to be done.

So, I've pretty much plateaued at 20 hours a week. Which is kind of frustrating, but what I've been learning in the last month is that there's a time to push boundaries, and there's a time to just be glad that I can do what I can do.

What's great about going to work:

I have a reason to get up and put real clothes on every day.

I have somewhere to be.

I have a project. And more than just having a project... it's a project that I have about 98% autonomy on, which has been really good for the parts of my brain that need to create a working wheel. I can't tell you what it has meant to me to have something to think about outside of planning my funeral. (Don't get me wrong, it's gonna be a rocking awesome funeral, and it's actually been sort of fun for my weird control-freakish self to feel like I have a guiding hand in my final party. But still, there's a sense of accomplishment that comes with this work project that I'm sort of missing when I'm working out funeral plans.)

I have responsibilities, but I also work for and with the most accommodating people. They're awesome about when I need to come in later or  leave early for an appointment... or when I can't make it in. (Because some days I just flat out hurt too bad to sit up in a chair that day.)

Going to work gives my life a semblance of normality. ... Even if I stagger up the stairs at 1:00 and am putting myself into bed as soon as I can get back in my pajamas, my mornings feel like I still have my normal life.

I'm working because I want to. The bank has been awesome to me - for all the time that I've known this management team, they have been awesome to me - but this year, especially, they have worked with me as my body's taken a turn for the worse. I'm working because I want to give something back to the bank, because of all they've done for me.

I'm working because I believe in doing all that I can do, and right now I can work part time. It's been my experience that when I do everything I can do, everything else just sort of falls into place when I can't keep going anymore.

What's hard about going to work:

I have somewhere to be, where I'm required to wear real clothes. (It's both a blessing and a curse, man!) I have this project that I'm working on, and every once in a while I have a bad pain day (or... erm... days) and then I start to wonder if/when I'll be able to finish it. And that can stress me out.

But at the end of the day, I am choosing this. I am choosing it because I want to be productive, because I want to contribute what I can, where I can. Because I want to finish this project, and then I want to be strong enough to start on another one.

Because... you guys... if I live, I need to know that I've done everything that I could, for as long as I could. That I never slacked off and let go of what I think is important. ... And if I don't live, I need all the people that I love (especially the kids) to know that I did everything I could, for as long as I could. That I never slacked off and let go of what I think is important.

Here's what I think matters: showing up in your life, doing everything you can do, trying every day to be even a little bit better than you were the day before, never giving up on what matters to you (even if what matters the most is keeping a smile on your face). And, right now, what matters to me is that I'm doing everything I can.

So, yeah, I'm working.  Because, right now, I can. And because I want to.

Sunday, September 20, 2015

Sept 20th

Today was a good day.

We have a missionary leaving our ward this week (the bishop's oldest son), so church was totally packed out this morning with Bill's high school friends and families that used to live in our ward but have since moved out into bigger homes in nicer neighborhoods. (It happens.)

It was like old home week. 

The high school kids reminded me of the time in my life that my friends and family were leaving on missions and we'd travel to be there for their "farewell" talk, and the families who'd come back to visit the ward reminded me of good times I've had with those women in the (almost ten) years I've lived in this ward.

It was kind of surreal, but in a good way, to have memories and emotions from two totally different times in my life converge. I spent all of Sunday School in the chapel, having a mini-reunion with the families who were visiting for the day, and hearing the chattering and laughter of teenagers behind us, as Bill's friends gathered around him, one last time.

It's been a while since I've had a day where I felt like so many conversations I was having were good byes, but today has been full of so many of those. I'm sure that part of that was brought on by saying goodbye to Bill, who I'm so glad I've been able to watch grow up... he's a great kid, and will be an awesome elder. But some of it is that... frankly, I'm not well.  

Between saying goodbye (literally) to Bill, having my sweet little old lady friend, Ruth, reach up and out of her wheelchair to pull me into a hug, and being (albeit temporarily) reunited with so many people who used to be a part of my weekly (and sometimes daily) life, just made today... more real than a lot of other days have been lately.

I don't really know what I'm trying to say. I don't feel like I can find the right words to make this make sense to me, let alone anyone else, but I needed to document this day for my own self. It's so weird to know that you're sick in a way that you don't have a guaranteed outcome, to know that your time with the people you love might be shorter than you want it to be. Usually, the lack of control over the length of my life is just a punch that I roll with. (Because, really, who knows how much time they have? Uh, no one.) I make the choice daily to make that day the best that I can, and I don't generally feel like I have a certain number of days hanging over my head. But today... today has been different. Not bad, just different. 

Just know that if you're reading this, I love you. I'm glad you're in my life. That, at some point in time (maybe even now), you've been part of my daily, weekly, monthly, annual self, and that means that you're part of who I am. Thank you, and I love you. 

Saturday, September 19, 2015

Four months

It's one of my favorite days of the year!

That would be: International Talk Like a Pirate Day.

AKA: Get a Dozen Free Donuts if You Dress Up Like a Pirate and go to Krispy Kreme Day.

This morning (after having had a sleepover last night with Maggie (7) and Sally (5), during which very few people got any kind of decent sleep), the Wood kids and I (sans Roomie, because she had a soccer game and thinks her priority needs to be with her team and not with us and our glazed donut pirate booty - lame!) dressed up and went to claim our goods.

One dozen donuts per person in costume = 5 dozen donuts. That's 60 donuts for five people to eat, kids.

And while we didn't eat all 60 of them, we ate... a lot of them. Like, until we all felt sick.

It was a very awesome morning.

And then, this afternoon, I met back up with the Woods to see this Mormon movie.

And, you guys... IT WAS FUNNY.

As in, actually funny. Not just laugh-at-Mormon-culture, funny. (Okay, mostly it was that. But I think it would be funny even for people who don't know about camp songs or ridiculous, totally contrived, but still somehow effective spiritual object lessons.)

I laughed. I cried. I thought about my life, about the people I love the most and would do anything for (including putting myself right back on chemo, even though it made me wish I could just die, in case it'll give me more time with them... but that's a post for another time). And then I laughed again.

At one key moment, I had just taken a swig off my ever-present water bottle and something happened that made me laugh. I mean, out loud. ... After spitting my entire mouth full of water into my hands and then letting it fall into my lap. (It was a super full theater, and I didn't have any napkins. Or warning. What was I supposed to do? Spew water on the kids sitting in front of me? ... I felt like spitting it into my own hands and then dumping that popcorny spittle into my lap was the right thing to do.)

You guys. This movie is funny. If you live somewhere that you can see it (which, mostly, is... Utah), you should. It was a good time.

And, when the movie was over, I walked outside to see this. You can try all day long, from wherever in the world that you are, but I'm telling you straight up that you just can't beat an Arizona sunset.

Pirate costumes. Free donuts. Harkins popcorn. A movie that made me laugh and made me cry. All kinds of quality time with my favorite little weirdos. A gorgeous sunset.

Topped off with the fact that, as of today, I'm officially four months into the 3-6.

It's been a really good day. ... And, so far, I am winning.

Saturday, September 12, 2015

September 11th

Two weeks ago, I sat in an exam room in Houston, and I heard that, while my little friend had been growing... it wasn't growing fast enough to merit starting chemo right away.

A precious few thoughts went through my head:

Thank you.

I get to have my birthday month. ... Again.

I'll be able to see The Sound of Music in the theater on Tuesday.

I'll get to go to Tempe Town Lake on Sept 11th.

I've got another couple months to eat chocolate, and see if I can't get my stomach to tolerate beef and/or bacon again.

I have more time.

Thank you.

I love Tempe Town Lake. All the time, during all of the seasons. I love the lake and I love the park and I love the bridges. I love it during the light of day, and I love it at night when the bridges are alive with twinkle lights. I love it!

But I especially love it on Sept 11th. They plant a flag for every life lost on the planes and on the ground. Each flag has a name and a brief bio for the man, woman or child that flag represents.

It is a beautiful, holy, experience to go and walk among the flags.

Last year, I was still recovering from surgery and I remember walking through the flags very carefully, taking mincing steps as I made it from one end of the park to the other... grateful that I was strong enough, well enough, to be there - but frustrated that I couldn't stop and stand at each flag, reading the bios, as I had done in years past.

This year, I walked into the park and I stopped at three flags. I read three bios. And then I had to sit down. (Most of these pics were taken from a bench. Or as I walked into or out of the park.) I can't meander through the rows of flags anymore, and I can't bend down to read the names tied to the combat boots. But I was able to be there, and I hadn't been sure that would be possible this year.

I am still here, and I still get participate in the events and the lives that matter the most to me.

I'm so grateful. To be an American, for the memory of September 11, 2001 and the weeks that followed. For my life, and everything that has happened in it. That I got to spend yesterday morning in a park, looking at flags, thinking about life and remembering what matters.

Friday, September 11, 2015

Project Chia Pet - Week 12

See? It's getting more and more out of control every week. Last week, I could (sort of) pull some bangs down onto my forehead. Now, it's just a big, bushy mess of curls.

I'm pretty sure that all twelve people who work at the bank commented on how curly it's getting today.

And by "curly", I'm pretty sure they meant "big". But hey, big hair has always been my trademark.

So, that said... It's good to be back.