Sunday, February 5, 2017

Post 103, in which I get a wire in my vein and an excellent surprise

Garth Williams from Little House in the Big Woods
Living with cancer means living with constant uncertainty.  For me that's one of the worst things to deal with.  You never know what's coming next and every single decision you make feels conditional.

Thursday I had my scans, a bone scan and a CT scan.  A good and a bad surprise there.  The good surprise was that my facility seems to have changed their oral contrast protocol, they've gone from nasty barium "smoothies" (2012 through 2015) to something else (iodine based, I think, early 2016) that tasted and felt better, to no oral contrast at all  (October 2016, February 2017) which is better still.  Twice in a row now it's been no oral contrast, so I think it must be a done deal.

I guess that's the joy of being a "frequent flyer."  Most people wouldn't know what they were missing, but with more CT scans than I can remember it's enough to know which flavors of barium smoothie to request (berry) and which to avoid at all costs (mochaccino), I know what I missed and I was thoroughly glad to miss it.

The bad surprise was apparently I don't actually have veins in my arm.  Ok, that's an exaggeration, I do have veins, but they're getting wise to the world of medical procedures and I guess they've decided it's time to fight back.  The first stick got in but hit some scar tissue or a valve and the IV had to be scrapped and the vein team was called in.  The vein team nurse tried again and the second vein collapsed so she decided to call in the top vein nurse.  The top vein team nurse tired a few different things and eventually called down a 3rd vein team nurse to put something called a midline catheter in a vein in my upper arm using ultrasound to guide it through.  More dramatic than I would have liked and kind of bad that it added an extra couple hours to the schedule, but, still, highly effective.

So I had my scans and went in the next day for my appointment with my oncologist.  I was honestly expecting, what with those rising tumor markers and having discussed potential next steps at last month's appointment and all, that she was going to tell me there was progression. Instead, I got an excellent surprise: turns out I'm stable and continuing on with Xeloda!

I asked about the tumor markers, but my oncologist told me that sometimes the same amount of cancer can evolve into one that just gives off more markers, so it could be that.  But also, she feels that it's not a good idea to switch treatments on tumor markers alone if I'm feeling good and the scans (and therefore the bones and liver) aren't getting worse.  You use up treatments that way for no good reason.  I like the way she thinks, it makes sense to me.

There had been some lessening in the cancerous lesions in the scans before this one, so I guess the news isn't quite not as great as it could be, but keeping the beast at bay another few months and not burning through another treatment is still, I think, always good news.

So now I'm in my kitchen, getting ready for the Superbowl.  Between typing I'm stopping to turn the bacon frying for potato skins.  Crockpot pulled pork is cooking away, a Turkish-Lebanese bread with feta and walnuts is rising on the counter and artichoke dip is mixed up and ready to heat. I'll be making cornepones to go with the pork closer to game time.  Our "baby" and I spent time yesterday trying on prom dress styles (with photos carefully emailed to her sister) and looking at fabric and patterns so I can begin sewing a dress once she decides on a style.  Nice to be here feeling well and feeling able to do these things I love, almost 3 years after my stage IV diagnosis, going on 5 years dealing with cancer.

It's good.  And I'm glad to be able to put off worrying about the next treatment, the next side effects, and how well the "next" will even work and if so for how long, at least for another few months.

I hope "our" Patriots win, but (and don't tell the rest of New England this), it's ok with me if they don't get this one.  I'm still going to consider this a winning kind of weekend.


Sunday, January 29, 2017

Distractions

Sans (female) by Eric Fortune
Has it really been 5 months since I last posted?  Doesn't seem like it but clearly it has been.  Sorry!

I'm happy to report I'm still ok, showing signs of starting to fail on Xeloda, but nothing too dramatic.

Mostly, it's those stupid tumor markers (still? again? always?).  After that nice dramatic slide when I started Xeloda, it looks like my cancer's doing what cancer does: evolving around the treatment.  Regular blog readers and metastatic cancer patients will both recognize this as a regularly recurring  theme with cancer.   You can throw all kinds of everything at it but all the while it will be figuring out how to get around it one way or another.

No matter how much I just want to have this cancer wiped out and stop having to worry about it, that's not how it goes.  It's really just a life-long game of wack-a-mole, over and over and over again.  And lots of prayers that, God willing, there will still be mole-hammers aplenty to keep on whacking.

So anyway, tumor markers. Since last September, mine have been slowly going up.  Not a lot, just a little bit each time, a tiny little jump but it just keeps jumping.  So that's not terrific news.
I had scans (bone scan and CT) in October which showed some nice improvement since the April ones--the mets in my liver shrunk by two-thirds.  But it's just comparing 2 snapshots, without a lot of info on what's in between.  And besides, those tumor markers...

And on top of that, I ended up having a brain MRI earlier this month.  I'd been having these weird headaches on only the right side and they weren't getting better.  So of course I was afraid.  I had headaches and rising tumor markers and breast cancer which most likes to metastasize in bones, livers, lungs, and brains.  I wasn't 100% convinced it was brain mets, but I wondered.

Thankfully, my brain is still clear and I can stop googling "whole brain radiation" and "cyberknife" and "skull immobilization frame", so that part's good. And the MRI did show why I was getting those headaches, so that's also good, or at least helpful.  But it turns out some bone mets on my skull and the part of the spine at my neck are causing the weird achiness, nice and clear on the MRI and in exactly the 2 spots where I've been feeling them, so that's not terrific.

I still think it beats brain radiation, so I think I still get to count this one as a win.  But, obviously, as far as wins go, it's a mighty shaky one.  You kind of have to squint to see the victory in it.

So, in light of those tumor markers and the win-not-win MRI, plus just regular scanning protocols, my oncologist ordered more scans and talked with me a little bit about what comes after Xeloda, assuming thing keep going the way they seem to be going.  Not exactly what I want to deal with, but it's amazing what you can put up with when you don't really have a choice.

Now in the meantime, life's been pretty good, actually.  My stepdaughter got a great new job, my daughter got accepted to 2 colleges and is waiting on the third.  I started taking a dance class, had a nice Christmas and New Year's, some fun adventures, lots of great cooking, and am planning a nice couple of vacations later this year (assuming cancer and whatever's coming next is cooperative, but the expectation is that it will be).

I think if the only thing I had in my life was cancer, I'd be in a pretty sorry state.  I'm really glad it's only part of my life--an unpleasant part, to be sure, full of frightening news and unpleasant side-effects and a "can't look away" kind of way of drawing your attention all the damn time--but still it's not the only thing I have.  Which is a very good thing.

Now we'll just have to wait and see how these next scans go.  Never a dull moment with cancer, I guess.  More info coming soon.







Friday, August 26, 2016

Where's a free dishwasher when you need one?


Want to hear a very weird but absolutely true story?

My dishwasher has been slowly dying for months (that's not, by the way, the weird part.  unpleasant, but not weird).  The dishwasher wasn't that old but the racks (top and bottom) had already rusted to ruin a couple of years ago.  We'd bought replacement racks, foolishly thinking that was a wise decision, and those, too, had rusted almost to ruin, yet again.  And the ruin didn't limit itself to just the racks, either--nope, other rust spots have been showing up on the washer itself.  About a week ago it flaked off the paint to show a nice quarter-sized spot of rusted through area and started leaking through said spot on the door. I caulked up that spot as a (literal) stopgap measure and we started looking at the options and prices of new dishwashers.

We'd hoped to have a little time left to get our ducks in order, but last Monday, it was pretty undeniable, our dishwasher was not only rusting apart, but also was now not even doing even a minimally acceptable job of cleaning--which, when you think about it, was the only job we were even asking the poor, rusting, limping appliance to do.  It was time to call it what it was: a kind of expensive and not particularly good looking drying rack for our newly remembered handwashing ways.

Handwashing isn't all bad. It gave me a chance to remember my youth.  And my grandmother who never owned a dishwasher.  And it was an interesting thought exercise but also a little sad to try and remember whether it was my grandmother or my home ec teacher who insisted that silverware and glasses should be washed before dishes and then pots (I never did figure out who it was, which, honestly, bothers me a lot because it's not like the two had equal impact on my life so how come I can't remember?).

But handwashing isn't fun.

But, here's the really weirdly cool part.  As I was leaving the office for lunch the next day, I saw it, this amazing miracle of a thing: in the foyer of the office building was a dishwasher just sitting there hanging out on a large sheet of cardboard with a sign that read:

FREE working dishwasher

As crazy as it sounds, I swear this really happened!

One of the downstairs offices had been renovating, which I knew because there were boxes in the lobby for a week, followed by cabinets parts sitting in the hallway, followed by more parts and a used office-like pieces.  But a dishwasher?  Our office doesn't have one and I honestly can't remember that I've ever worked in a place that did.  What are the odds, and less than 24 hours after we realized we couldn't use ours anymore?

So yeah, I put a nice addition to the note thanking them and telling them we'd pick it up that afternoon--didn't want to risk the awesome thing disappearing, especially not to a "guess no one wants it" dumpster.  It actually took a day while we arranged to borrow my brother- and sister-in-law's van (thanks, J and J!) since it wouldn't fit in a car (we tried) and last night, a mere 3 days after we started handwashing, I bought a new $12 drain hose and installed this thing (installation manuals and YouTube are wonderful things), and--get this!--ran a load of dishes.  Three days.

It's not new, probably about 5 years old, judging from the model number, but it works beautifully, and has neither rust nor leaks.  It's also the right size for the space and even the same white finish to match our fridge and oven.  Honestly, it's weirdly perfect.

Looks good, right?


 I just keep shaking my head.  I mean, what are the odds?  Just what we needed, perfect, free, and right there the very next day.  I've never seen a free working dishwasher hanging out in a hallway before, not in that office and not any other hallway that I can remember.  I know I have stage IV cancer and everything, but I still feel like I must be the luckiest person EVER.  What a crazy blessing. 

Do I believe in miracles?  Theoretically I'd say yes, but happening to me, if I'm honest, no, I didn't really believe miracles on that scale can happen in my own life.  It's like they're nice for other people, but this is me we're talking about here.  I generally feel more like a "make it happen" kind of gal than the "charmed life" type.*

But maybe I need to rethink that a little bit.

Does a free dishwasher mean anything at all about doing better than average with metastatic cancer?  Well, no, not really.

I know that.

But, on the other hand, which of us really knows what treatments will work for how long and what new therapies might come down the pike?  Who knows what the future holds?

I know my cancer odds aren't excellent.  My odds are actually pretty damn crappy.  But who knows? I could be one of the lucky ones who pull this thing out for a long while.  I mean, stranger things have happened.  Like this dishwasher, for example.



*Just to clarify, since my husband read this differently than I intended, so he's probably not alone, I don't mean my life isn't great, because it is and full of blessings--I'm just trying to say that we have to work for things, usually anyway, rather than just putting out our hands and watching them fill with diamonds.
-----------------------------------

(Also, I went for my monthly oncology appointment today, white blood cells are low but acceptable so no need to take extra time off of Xeloda, plus my liver numbers are back to normal again which is great--guess that's kind of par for the course this week!)

Tuesday, August 2, 2016

43.0



Can't believe I fell asleep before I posted yesterday!  I got my tumor markers and they, thank God, continue to be stable.  43.0 so even a little lower than the previous 45.1.  I'll take it!

Sunday, July 31, 2016

My life as a spoiled toddler

The amazing Barbara McClintock's "Fairy Bread"
from A Child's Garden of Verses

It's been a while, hasn't it? 

I'm happy to say it's not because I'm doing terribly. I'd like to say it's because of I've just been too busy being fabulous to take the time to post, but that's not really it either.  Mostly, I've haven't been blogging because I've been mentally acting like a spoiled toddler going all, "I can't hear you, I can't hear you, I can't hear you!" to my cancer.  For a long while there, I just didn't want to deal with dealing with it.

Real mature of me, right?

It started in May.  I had my usual appointment and got my tumor marker numbers.  I'd been really, really hoping they would be continue their downward path right on down into "normal" range, finally.

They weren't.

They weren't bad, less than 1 point up, from 47.5 to 48.3, so stable, and I know I was damn lucky to have that, but, like a spoiled toddler, it really ticked me off not to get my way.

In June, they were a little lower, 45.1, so again essentially stable with a twist of "lower" but my white blood cells were just on the edge of "trouble" and I still wasn't into the normal range, so my funk continued.

It's kind of weird, I know, especially looking at where the number were.  I should be dancing in the streets to remain decently stable.  I think, really, it's just that I've been fighting this stupid thing non-stop for years, now, and I just wanted a break.  I really wanted Xeloda to shove me right smack dab into "no evidence of disease" territory and let me stop worrying for a little while.

And, yes, I know "stop worrying" wouldn't really happen because cancer is never going away even if it's not detectable and every single day is an opportunity for the cancer to outsmart the current drug and come storming back, etc, etc.  But the dream was so strong.  And so beautifully tempting.

It's hard, sometimes, to know I'll never get that.

And so, here we are today.  Another oncology visit last Thursday, waiting for more tumor markers to see how things are.  They may even be lower, they hopefully will be stable, and no matter what they are, it's been a good month and I feel good, so there's always that.  But still, the uncertainty.

Added to the uncertainty, my neutrophils (you'll remember those suckers are the white blood cells that fight infection and my inability to keep enough of them while on Ibrance last year is what tanked that drug for me), which had been trending down slowly but surely over the past many months, are now officially below 1.00 so I'm ordered off of Xeloda for an extra week to give them a chance to regroup.  No one really knows if the week off will make any difference in the cancer fighting.  I guess it doesn't even matter since the risk of infection is such that there isn't really any choice but to take a break, but still.

Yet, in the meantime, life has been pretty normal.  I get tired, I get painful feet and hands, I have trouble sleeping sometimes, but I also go to work, spend time with my family, grow my summer garden, and I just got back from a dream vacation with my daughter in Spain (so that was awesome!).

It's hard to live with the uncertainty, never knowing what's going to happen from one month to the next.  I would like nothing better than to "get through this" or "lick this thing," and some days it's all I can do to stay in the moment and not let fear creep into my enjoyment of the day (although, I'll admit, Spain was pretty distracting and so many great moments to enjoy).

I tell myself to trust God, I tell myself to be not afraid.  But sometimes it gets the better of me anyway.  And sometimes I'm just tired plain tired of dealing with it.

But I think, for now, I'm mostly over being a spoiled toddler. And I'm definitely going to try and be a better blogger.

Thank you for having some patience with me while I go through the ups and downs.  More news on tumor markers hopefully coming soon.

Wednesday, April 13, 2016

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)!

Saturday, April 9, 2016

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.