Going down

Got more tumor marker results on Monday, down again, which is the good direction (as one of my nieces wrote, "Keep it up! And by up I mean down!"). 

Here's the latest:

Just 7 points from the "normal" range, dropped 70% in the last 4 1/2 months since starting Xeloda.  As you can see, I haven't had numbers this good since 2014, before Faslodex started to fail. 

Nice, right?  I hope to have a lot of time to get used to this. Go, Xeloda, go (and by go, I mean stay)!

Who doesn't like good news?

I don't really believe in luck, but if I did I'd swear this

girl was dodging my every move yesterday.  (image source)

Great day yesterday! 

I spent the morning in the hospital and started another cycle of chemo.

Why is that great?  Well, I'll tell you why.

The hospital visit was my progress check CT scan and oncologist appointment, the chemo is still Xeloda.

If you're a mets patient like me, you've probably already made the connection and understand why that's great news.  But for everyone else, let me show you a bit about our world:

Basically, with metastatic breast cancer (and probably other incurable cancers, but I'm no expert), the routine is to use a treatment (generally starting with the one least likely to have the most unpleasant side effects, so for ER+ cancer like mine, start with the anti-hormonals and move on to chemos like Xeloda and then on to harsher chemos when needed), check the cancer periodically, and either continue with a treatment that's at least preventing continued cancer growth or switch off of a treatment that's failing and try a different one.

See why it's good that I'm still downing Xeloda pills morning and night? Yep, my CT scans showed it's still working.  Not only working but, actually shrinking the tumors in my liver!  That's great news.

CT also showed that the lesions on my bones are not visably growing and there are no new lesions on my bones that the CT could pick up.  And, my oncologist said it looks like a few of the eaten away parts on my spine are filling in a bit with some denser sclerotic bone growth (admittedly, cancer progressing can also look sclerotic under certain conditions, but in context my oncologist believes it's a good sign).

How much are the liver tumors shrinking?  I don't know yet.  My oncologist showed me the scan images from December and yesterday and, to my totally untrained eye, the biggest tumor looked about half the size, which is cool to see.  But the radiologist's report wasn't final at the time of my appointment so I won't get a copy of it to read the measurements for about a week until it shows up in my online interface. But still, it looked good and my oncologist was pleased, so I'll take it!

Other great things about yesterday:

• The hospital had switched from barium smoothies to an oral iodine-based contrast.  This tastes so much better and is much, much easier to drink and digest than barium contrast (barium is a chalky pulverized rock--suffice to say the barium "smoothie" doesn't get it's thickness from ice cream or yogurt).  That was 100% win!
• The CT technologist got a good vein on the first try!  Herself!  Without having to call in the IV team!  And it wasn't in my hand as a last resort which hurts like heck when the push in the IV contrast!  Again all win.
• Technology and patient-centered processes are a wonderful combination.  I went in at 7:40 am to start drinking contrast and had my results from my oncologist less than 5 hours later!  And that included time for her to walk down and discuss some things with the radiologist.  Do I love not having to wait for days for news?  Yes I do!  (and, incidentally, Blue Cross/Blue Shield, this is one of several reasons why I am not interested in your phone calls every time I get scan preapproval suggesting I cancel my imaging appointments and reschedule them to whatever random facility your software tell you will do it slightly cheaper. If you could stop with those phone calls already, I'd really appreciate it.)
• It was bright and spring-like when I arrived at the hospital and made my way into the basement rooms where they house the imaging department.  After my scans, as I was walking down the hall to oncology, I was noticing for the first time how beautiful the blue sky and soft, fluffy clouds looked overhead through the glass ceiling that covers that particular hall.  I'm told it was pouring rain in-between but I missed the entire thing.  Nothing but blue skies for me!
• As I was going up the stairs from oncology I happened to be there at the right time in the right weather to have rainbows under my feet where the glass under the railing reflected the light from the skylights--lovely.
• When he came home, my husband made his awesome chocolate-chip cookies and I ate several.  Hot out of the oven.  And they were delicious.
• And, of course, the best thing, I got good news to share.  And that's always a win!

Sometimes, at home, because I'm a dork, when things are going particularly well, I'll break out with "All I Do Is Win" (not the most PC of songs, but the refrain cracks me up).  Yes, I'm a 40-something wife and mother, but, like I said, I never claimed not to be embarrassingly dorky. I thought about using that as the title of this post ("All I Do Is Win," as the title, that is, not, "Embarrassingly Dorky" which is more true but less fun), but it seemed too much like tempting fate.  I have stage iv cancer so clearly I don't always "win, win, win, no matter what, what, what," but yesterday it was like the charm fairy suddenly decided to take up residence on my shoulder and stay there all day. And it was wonderful.

Live like you were living

"Live like you were dying," is one of those things.  It's supposed to be a freeing, YOLO inspiring, "go get um!" kind of rallying cry.

I get that.  It's not good to waste your time procrastinating.  It's not good to spend all your time doing only what you hate thinking "someday" you'll stop. 

The problem is, with all due respect to Tim McGraw, it's also kind of hard to plan all that skydiving, Rocky Mountain climbing, and 2.7 seconds on that bull named Fu Manchu when things are uncertain.

There's the obvious cancer uncertainty where you don't really know what the cancer's doing or when it's going to work around the current drugs.  But there's also the less obvious uncertainty, the one where you think life just might stay relatively normal for a long, long time.

It would be wonderful if that happened, if I was part of the small percentage who got years out of Xeloda.  Or at least enough time for something else to be discovered that worked well and made life more normal than unending IV chemo.

Actually, it would also be wonderful if I felt relatively good on IV chemo and stayed on it for a long, long time.

And it probably would still make me happy if I felt bad sometimes on IV chemo but still was able to stay on it for a long, long time.

But any of that would make it a terribly stupid idea to cash in everything and spend the next few months going crazy doing all those Tim McGraw sung things.  Because with nothing to live on but memories of being tossed off a bull, life would be kind of rough.

Pencil pushing gets a bad rap in our society, but let's face it, when pencil pushing puts food on the table and a roof over our heads, it has its uses. 
 
In my head I know the key is trying to walk that line between doing things in the moment and planning for the future.  If only that line was easier to see.

But I'm trying.

I'm planning a vacation this summer.  Flying with my daughter to a country we've dreamed of visiting, where she can practice the language and we can stroll around and see wonderous things.

I'm researching sites, looking at the budget (thanks, Mom and Dad), deciding how to pace the trip and what to see.  I'm also planning around my energy levels, my drug shipment schedule, my poor feet and hands which are fragile these days and, even with good care, hurt a few days every couple of weeks.  But it feels doable.  Doable and a heck of a lot of fun.

...

Next month we'll be at a road race and arts fair in memory of my stepdaughter's boyfriend's sister who was tragically killed in a car crash in her early 20's. 

Earlier this year, Holley Kitchen, the woman whose awesome metastatic breast cancer video became a viral sensation passed away as a result of her cancer at the age of 42.

Last week my mother-in-law's cousin died after a short illness.  She and my mother-in-law used to waitress together in the Catskills when they were teenagers, an age where just about everyone believes their lives stretch in front of them in an unending line of health, fun, and freedom. She's survived by her children, her 14 grandchildren and 1 great-grandchild--probably not at all what her teenaged self was thinking about back then, but part of what it really means to have had 70 additional years of living. 
...

What's the lesson in all this?  I have no idea.

Tomorrow's a gift? Life is fragile?  Life is for living?  Live like you were dying?  Live like you were living?

I don't know.  I'm really just trying to figure it out myself.
 
And, I'm looking forward to being there for a memorable vacation this summer. 

I hope that's the right balance.  Or at least the right balance for me, now.