The other shoe drops

Kinuko Y. Craft's divine Cinderella

My nice and relatively easy 20 month run on Xeloda is officially over. 

It was a good run but the drug has finally failed me--or my cancer has bested it, whichever--in a fairly dramatic way.

I had had a CT scheduled for later this month, but for 3 or 4 weeks before that I had developed a worsening cough and found myself more and more out of breath.  I was hoping it was a cold, a viral or bacterial infection, just something (anything) normal that normal people get and normal people get over.

It was not.

Last Monday I called the triage nurse in oncology.  I had been ok waiting 3 more weeks for my CT scan but things were getting worse and over the weekend it developed into a case where something like going upstairs made me feel like I was drowning.  Even little Pollyanna wannabe me know that was not good.  So, with my smart husband's increasingly strident suggestions, I called oncology the minute the office opened for the day (the triage line is 24-7 but that seemed a little like overkill since it wasn't an emergency and they would probably need to consult with my onc when she came in anyway) and told the triage nurse what was going on.

The triage nurse talked to my oncologist.  My oncologist moved my CT to first thing the following morning.

I had the CT, got a call from my oncologist, and went in the following day to see her and talk lungs and CTs.

During the previsit vitals the tech moved the pulse ox monitor from finger to finger.  She asked me if my fingers were always like that (fingernails of ghostly white), she mentioned my oxygen was low and my pulse was high.  I assured her that I was there to talk lungs so it might not be so surprising.  After bloodwork my onc had the tech walk me around with the pulse ox on to see how low it went (within reason, of course).

 My oncologist showed me my CT scans.  She showed me the plural effusions (liquid surrounding my lungs) and how on the right side it covered the length of my lung (mercifully less on the left) and how there was much haziness throughout both my lungs that hadn't been there in April.

That explained a few things.

She said the CT couldn't say if it was infection or spreading cancer.  It could also be heart failure.  She admitted me to the hospital to let pulmonary do their thing and get some heart scanning done.  They also gave me supplemental oxygen which is a wonderful thing.

Long story short, they diagnosed me with bilateral plural effusion, acute pulmonary failure with hypoxia, and something else I don't remember that meant there were things in my lungs.  They drained 750 ml fluid from my right lung and sent some for testing (the pulmonary fellow said that would make me feel better and it does a bit but, honestly, not enough to feel normal like I had hoped). They did a million other tests, put in a mainline to access my vein, drew a bunch of blood, took an EKG, an echo-cardiogram, and a follow-up lung X-ray.

And this is what they came up with:  it's not an infection of any kind, my heart is the same as it ever was, but the plural effusions show cancer and both lungs have "diffuse interstitial infiltrates seen throughout both lungs more pronounced at the lung bases" aka cancer.

So, that's dramatic.

But my oncologist is no stranger to drama because she's an oncologist.  And so she has a plan.  On Monday, first thing AM, I'm going in to to the usual pre-visit testing, talk about the plan, and start right in on a combination IV chemo treatment.  They aren't even waiting to place a port; we are, apparently, going hardcore offensive against this cancer to try and clear out those darn lungs. 

I believe the plan is a drug called Gemzar combined with Taxol.  But I'll know more on Monday at my appointment before they give it to me. 

So this weekend I am taking it easy, monitoring my oxygen saturation, wondering how much longer I'll have hair.  And Monday, I'm back to my chair in the infusion suite and back to the wars. 

Up, Down, All Around

Bottecelli's stunningly pretty Primavera - I love this painting and
someday I probably should blog about how we were able to get
in and see it despite long lines and limited time, and in a completely
rules-following way, too (one of my proudest moments!).

But for now, just notice those are definitely primroses on that path!

Life has been good but cancer has been a little weird lately.  My tumor markers have been going up, up, up and are now at an all-time high but my scans have been stable twice in a row now.  Very strange.

My oncologist seemed surprised by the scan results the first time (or maybe that's just me still obsessively trying to grasp clues out of voice inflection and tone?) but she says the scans always trump tumor markers so we're just keeping on keeping on.  But it's strange.

Cancer usually changes all the time.  That's why stage iv patients have to keep changing treatments.  First something like Faslodex that prevents the cancer from feeding off of estrogen can work well, but over time the cancer evolves so that it does just fine without estrogen or maybe it figures out a different way to get around the Faslodex and still get estrogen, thank you very much.  At that point you're done with Faslodex.  So maybe you move to a different anti-hormonal that works on estrogen just a bit differently, but if/when that one quits (assuming it ever works in the first place), maybe it's time to go to a chemo like Xeloda.  Xeloda tries to sabotage cancer at certain times in the cell growth cycle, but over time the cancer adapts and Xeloda will stop working and it's time to try a different avenue of attack.  And so on, and so on.


Different people's cancers give off different amounts of the proteins measured in tumor markers.  That's why someone might have a few small spots of cancer and have tumor markers in the 1000's and someone else might have cancer on multiple bones, liver, too, and still have tumor markers in the low 100's (waves and points at self like a crazed game show contestant).  It can be a huge source of panic for someone with really high tumor marker numbers to realize how high they are in comparison to other people, but it doesn't necessarily mean they're loaded with cancer.   It's an easy rookie mistake, though, because it feels like it just makes sense!

Some people don't really have useful tumor markers at all, and for people who do, they usually do track well against cancer increases and reductions compared to the same person's previous numbers, but, my oncologist tells me, cancer, in addition to changing to work around treatments, can change in other ways and sometimes for some cancers that can mean changing so the same amount of cancer creates more of the proteins that are measured in the blood in tumor markers.  She thinks that's probably what we're seeing here.

Are we positive?  Well, no real way we can be.  But with two stable CT scans, two stable bone scans, and a clean brain MRI (except for the bone mets in my neck and skull bones that showed up, but we already knew about bone mets) there aren't really any places this much extra cancer can hide so it seems likely.  And, as long as I'm feeling well and the scans and liver/blood cell numbers aren't showing trouble, she thinks it's unwise to burn through the limited number of treatments available based only on tumor markers not backed by anything else.

So, until that something else happens, I keep looking at things like this:

 

and keep reminding myself not to panic.  Easier said than done, I'll admit, but in the absence of other choices, or at least other smart choices...

And, honesty, although I completely miss having these tumor markers serve as my own personal oracle, ignoring the tumor markers and skipping down my own happy primrose path does seem to get easier with time (primrose path's are quite lovely and a lot more fun than constant fear, after all).  At this rate, whenever my scans do get bad again, I'll probably be incredibly shocked even though of course, rationally, I know it's going to happen at some point.  Apparently, I just really like pretending I'm unstoppable, I guess.

But, until the scans tell me it's time to worry again, primrose it is! My (real life) garden is planted, I'm doing some alterations to our baby's prom dress and planning the graduation party with my husband (and there were people who told her I probably wouldn't live to see her graduate!), getting ready for a couple of nice trips, and generally going about life.

I've said before how in my opinion the uncertainty is one of the toughest part of this stage iv thing to deal with, but I guess for now a little bit of "ok at this moment" mixed in with a few decent scans and some nice distracting events isn't so bad a way to welcome the summer.

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.

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.

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!)

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!

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.

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.

Well, would you look at that!

I'm in the middle of my 6th Xeloda cycle now and yesterday I got the results for the tumor markers from my latest oncology appointment.  Take a look:

See that steep downward drop at the end?  Pretty, right?  That's the additional 40% dive they took from 127 to 76 over the past month on Xeloda--very good news!

My liver numbers are back in the normal range, my tumor markers are dropping noticeably, and the Xeloda side effects aren't as bad as I'd feared.  Win, win, and win!

Normal for this type of tumor marker is below 40--I've been close to that on Faslodex, but never quite got there as a stage IV patient)--but if things can just keep on this way, I'm beginning to think it may be possible.  Wouldn't that be cool?

But whatever the future holds, thank God right now I'm responding well to this drug. 

A few Xeloda bits and pieces

Illustration by Joanne Negro from Wonder

Books' Let's Give a Party

I've obviously been thinking a lot about Xeloda these past few weeks.  "Thinking about" mostly means incessant Googling, worrying, wondering, and guessing.  But it also means talking with my oncology team and doing what they say.  So, and this is mostly for those of you who find yourself on Xeloda, but it's sort of a progress report, too, I have a few Xeloda related thoughts I'd like to share.

30% - Assuming I'm reading things right, Xeloda works in only about 30% of women with metastatic breast cancers.  That sounds terrible in real world stuff ("here, take this pill, it has unpleasant side effects and less than 1 out of 3 people found it either helped or at least kept things from getting worse"), but that's how these things go when your dealing with cancer.  I know I'm not going to convince anyone I'm made out of luck since I have this cancer thing plus I never, ever win raffles, but I feel like blessings are raining down on me that the first preliminary indications are that I'm one of that lucky 30%.  And the side effects haven't been so bad all things considered.

Fatigue - That's one side effect I've been feeling but I'm actually finding that in addition to early bedtimes and resting when I can, surprisingly a little moderately paced walk helps.  Well, that and sometimes coffee.  I'm finding that I'm having more trouble sleeping during my 7 days on weeks, so that might play into it, too, hard to say.

Nausea - This was hard the first week.  It wasn't the terrible all consuming nausea like I had the first day or two in 2012 before we got the right mix of antiemetic drugs during my stage III chemo, but it was happing a lot and it was unpleasant.  But I think I posted about my oncology nurse practitioner's advice to try taking a daily Prilosec (or 2 a day if it sort of helps but not all the way).  I thought it sounded a little unlikely to help since I wasn't having reflux or acid-type symptoms, but given that she's a) smart, b) experienced, and c) trained in oncology, I gave it a shot.  Besides, as she told me (and as I remember from 2012), traditional antiemetics tend to have more unpleasant side effects (sleepy, jittery, foggy, twitchy--tons of fun!) and if the Prilosec doesn't help those are still on the table.

And, I'm happy to report, I'm glad she's on my team because the nausea was much, much better the 2nd and 3rd cycle where I was also taking Prilosec.  I had a few waves of it during the week, but not so bad that I wanted to reach for my Compazine and not enough to impact my life.  I'm calling this a win!

Hand and Foot Syndrome - This side effect has been tricky.  I've been moisturizing all the time and had even taken to gooing up my hands and feet with Aquaphor ointment at night and walking around in white cotton gloves (think Mickey Mouse or a butler) to protect them, but was still finding my hands hurt and I was developing some raw spots on my hands and hard callus-like patches on the balls of my feet.  They seemed to be getting slowly better on my off weeks of the 7-days-off-7-days-on Xeloda cycles but starting up again quickly just a few days later when I was back on the on week.  It wasn't, so far, bad enough that I would need to cut back on the Xeloda but since the H/F thing is cumulative, it was a worry for me.

But, talking with my oncologist this week, she suggested trying 20% urea cream.  She mentioned Udderly Smooth Extra Care 20 as a good one, but the 20% urea was the important part rather than the magic of udder cream in and of itself.  As it turns out, my older brother (who, to the best of my knowledge can't predict future oncology recommendations, but I may need to rethink that one) gave me a tub of that at Christmas, so it was easy to give it a shot. 

One of my sisters-in-law always says to make sure you have the smart people on your team, and I'm glad I do because at least for me the 20% urea cream made a big difference.  The feet are better and the hands are a lot better in how they look and feel.  Everything isn't perfectly normal, but much easier to live with. 

I couldn't find the 20% urea Udderly Smooth in my local drugstore, but I did pick up some Excipial brand 20% urea cream to keep in my purse and desk because, like the Prilosec, things that are working without much downside are worth keeping on with.

Moving Forward - Well, first and most constant prayer is that the tumor markers continue to drop and future scans show things getting better or at least not getting worse, and that those things will repeat over and over again for a long, long time (or forever, because forever would suit me just fine). 

The fact that Xeloda seems to be working for me so far is a big win and the fact that the side effects are so far very manageable is also a win. As is the fact that, so far, there's no reason to need to drop down the dose or take and unscheduled break from it as has been my recent experience with the last few cancer drugs.

And honestly, for me, with the right steps, the side effects have been really manageable.  I'm able to work and cook, clean and take care of my home and family, do normal things without a whole lot of changes.

It seems from breast cancer forums I read that a lot of women are starting Xeloda recently.  It may be just that I wasn't paying attention before, or maybe it's that a lot of women started Ibrance when it was first approved and if you gave that the required 3-4 months and then a different antihormonal like Faslodex or Afinitor another 3-4 months, that brings us to now and Xeloda as a good first line chemo to try. 

If you're one of those women trying to find out what to expect with Xeloda, hopefully this will give you at least one snapshot of what at least the first 5-6 weeks of Xeloda can be like.  Not as good as not having cancer or not being on chemo, but not that bad, either.

And now I'm off to do the breakfast dishes (yes, it is after 12:00 noon now) and then I'll take down my Christmas tree and pick up some groceries.  Because I'm feeling well enough to do that sort of thing.  And that, to me, is exactly what winning is made of.

To exhale

Caspar David Friedrich's Wander Above the Sea of Fog 

I feel like I can finally stop holding my breath for the first time in 5 weeks.  Or maybe the first time in 9 months.  Whichever.

This evening I got a note from my oncologist with results of my latest tumor marker test and my tumor markers are actually down.  From 157 to 127 in  the past 5 weeks, just like that.

Finally another drug that's started out by working, thank God.

It's been a while. 

Except for a 1-time dip in June, I'm pretty sure this is the first time the tumor markers have been meaningfully down since July of 2014.  Even for most of my time on Faslodex, they were mainly holding steady.  And then, as regular readers will know, 2015 was a year of multiple failed drugs, ever increasing tumor markers, and scan after scan showing things going in the wrong direction.

It's a great relief to have some good news for a change.

I promise I really do understand that the expectation is still for the cancer to work it's way around Xeloda sooner or later, at which point we'll move on.  But at least Xeloda isn't another total failure (yes, Ibrance and Letrozole, Afinitor and Aromasin, I am looking at you). And even if Xeloda does punk out sooner rather than later, I figure we'll still be dealing with growth from a better point then we've recently been at.  At least that's something.  And you never know, maybe Xeloda will just keep on doing this beautiful thing for a while and exceed expectations.  It could happen just that way.

For me, for today, I will celebrate this little victory. Tomorrow will bring what tomorrow will bring whether or not I dance and cheer tonight.  And especially after 2015, where this cancer is concerned I'm glad to finally have something to cheer. 

And I can finally stop holding my breath, stop waiting and wondering whether Xeloda is going to do anything at all.

Nice start, Xeloda, thank you.

And away we go...

James and the Giant Peach cover by
Nancy Ekholm Burkert. I love these
illustrations.

When I was in 3rd grade, my teacher read James and the Giant Peach out loud to our class.  As I recall, it was an exciting beginning and a great adventure for most of the book. But I don't remember how it ended. In my memory, there was something about the peach rotting and things going badly and a desperate crash landing and James' animal friends going away forever and James ending up alone.  In my mind, it was not a happy ending at all.  In my memory, it was a sad and brutal finish to a story that had started out so full of joyous promise.

But today, looking at Wikipedia's entry for the book, trying to remind myself exactly what happened in the ending, the Wikipedia summary describes a story that ends happily, not at all sad and lonely the way I remember it.  Now I don't know what to think.

When I was in 3rd grade, life was a different kind of stressful, unpredictable, out of control, and too often lonely and sad.  It's entirely possible that what was a whimsical funny ending for many 8 year olds just hit all the wrong chords for me at the time.  Maybe what was supposed to be a fun and goofy ending just didn't work that way for me and the life I was living at the time. It's entirely possible.

I never re-read that book, never wanted to. I've read 100's of my old favorite books to my daughter and some to my step-kids, too, and I've delighted in the stories we've shared.  But James was purposely not one of them. I never wanted to revisit James and the Giant Peach and the terribly disappointing ending.  But maybe I should have or still should, at least so I could see if the ending is good or bad.  Maybe with experience I'd finally be able to see why someone I remember fondly as a very kind and caring 3rd grade teacher would think it was a great book to read to her class.  Because in my memory, I still don't understand the choice.

....

Do you want to know something surprising? My Xeloda didn't take 3 weeks to arrive.  It actually took 3 days (well, 3 business days, anyway) to show up on my doorstep.  After all the trouble with previous drugs, how's that for a surprise?

Maybe Xeloda has less paperwork and insurance approvals, or maybe it's just that with the Ibrance and Afinitor approvals, any questions for Xeloda were already answered in the system?  Whatever happened, it was pretty nice to have the pills so fast and without a single phone call to see what the heck was going on.

I got them so fast, in fact, that I actually had to message my oncologist and see if I needed to wait the 2 weeks it was expected to take after stopping the Afinitor and Aromasin or if I should start it sooner since I had the drug.  She told me a week would be plenty, so I took my first 3 pills last night.

I'll be taking 6 pills a day--3 in the morning and 3 in the evening--for the next week, followed by 7 days off.  Why didn't I start it yesterday morning to make a full first day like a normal person would?

Oh, come now, if you've read more than a couple of my posts, you know me and my story enough to already know the answer to that one! The reason is because I had taken my Aromasin in the morning before seeing my oncologist/nurse practitioner in the day so it wouldn't have been a full 7 days off of the prior drugs if I took it in the morning.

So, again, only if you're new here, your next question is probably, "Do you really think those extra few hours make any difference at all?  Really?!?"

Well, no, not really, but still it seemed like the thing to do, and when I'm anxious or afraid I find keeping things as predictable and well controlled as possible is sort of comforting.  There's so much with cancer that I have absolutely no control over whatsoever, I try to take advantage of the things I do.

So there you have it, and as of this morning, I'm 2 doses and 6 pills into my new stint on Xeloda.

It's really too early to tell how the side effects are going, much less whether it's going to do a good job reducing the tumors.  I felt a little nauseous this morning, but better after breakfast.  Also, my hands and feet felt kind of ichy/tingly yesterday evening and I didn't sleep well.  Does any of that mean anything after only just barely starting the pills?  Probably not.  I expect what it really means is that I have Xeloda on my mind and am hyper-aware of (read: madly, obsessively focused on) every little thing that could possibly ever be related to it in any universe, known or unknown.  Hopefully I'll be more relaxed about it in time.

I've read blogs and posts from a number of people who have had really great rides on Xeloda.  I've also read about people who didn't have so much success on it, but for now, because there's not much to be done about it anyway, I'm trying really hard to focus on success stories and the good potential this has for me with relatively few side effects as far as chemos go.

....

As far as entertainment goes, on the other hand, whenever I read fiction books these days or pick out movies to watch, I always cheat and find out the endings before I begin.

You might think it's James and the Giant Peach related madness, a crazy obsession focused on avoiding the same kind of disappointment, but I can't really blame it on that.  In my teen and young adult years, I used to love tearjerkers and loved all kinds of books with deep, sad, bittersweet endings.  For many, many years my favorite book ever was The Unbearable Lightness of Being, I loved the story, I loved the philosophy, I felt deeply for the characters and the tragedy of the situation, and I found the sad ending of inevitable destruction so beautifully perfect given the poetically tragic set-up that brought our characters to that final resolution.

But these days, after cancer, I can't stand to spend my time on sadness like that.

If I do ever re-read James and the Giant Peach and find out for sure if it's a crazy fun ride that leads to a whimsical, joy-filled resolution, or a crazy fun ride that leads to inevitable sadness, loneliness, and loss, I know myself well enough to know that it will be a re-reading that begins last-chapter-first and will not go any further if I don't like how that first look at the last chapter goes.

I know that sounds crazy, I understand it's a little nuts. But, I'm ok with that.

These days, I just can't take spending my time getting to know a story, getting to know and love characters, just to watch them end in sadness and despair.  Even beautifully tragic sadness and despair, I'm just not interested.

Really, in these post-cancer days, I can't even take spending my time getting into a story not knowing the ending and just having to worry that it will all end up in tragic sadness and despair.  Even if the ending turns out to be happy after all, I'm just not willing to put that kind of stress on myself.  If I'm going to put my heart and soul into a story for fun, I need to know it will come out well before I even start or I'm not willing to put my time into it.

Yep, I'm sure that makes me certifiable.  And I don't care.

But I do find it kind of ironic, as I sit here in real life typing this, less than 24 hours after starting yet another new cancer drug.

On the move again

Good news is the mouth sores stayed better.  I had a couple in the last few weeks, but one at a time and they didn't take weeks to get better, so that was good.

The bad news is that while Afinitor was working great on creating canker sores, it wasn't working as well on my cancer.  I had an ultrasound last week and found out yesterday that there's more growth in my liver, so moving on.

It really isn't overly surprising, I guess.  So far since my stage IV diagnosis in February of 2014, we've been working through the arsenal of anti-hormonal drugs.  But of the Tamoxifen, Faslodex, Ibrance and Letrozole, Afinitor and Aromasin, only the Faslodex (my 1st stage IV treatment) had any real success.  After my cancer evolved around that, it seems to have been able to outsmart that type of treatment no matter what the form.  But I really had hoped for better.

The cancer in my liver didn't increase by that much, but my oncologist doesn't want to keep throwing time at the Afinitor given my history, so I stopped taking Afinitor and Aromasin yesterday and will begin a chemo drug called Xeloda as soon as my insurance and specialty pharmacies can get it together and send it to me, probably in a couple of weeks (but, obviously, given my history with insurance and specialty pharmacies, I don't recommend holding your breath, unfortunately).

Xeloda is supposed to be an easy chemo (as far as chemo goes, I guess), not like the dose dense adriamycin-cytoxan-taxol I was on at stage III.  It's not an infusion, it's a pill (well, 6 pills a day for 7 days, then 7 off, then on again, actually) and it doesn't typically cause hair loss so I'm not back to the wig just yet.

It can cause nausea, vomiting, other GI issues, and fatigue, but less often than what people think of with chemo.  It can also cause mouth sores, but I guess at least if it does, I'm good at working through those by now, right?

The big side effect, most common and most impactful, is something called Hand Foot Syndrome (not to be confused with Hand Foot Mouth Disease, which isn't a side effect of any chemo drug).  Hand Foot Syndrome is a painful burning, swelling, redness, chafing, blisters and peeling on the palms of the hands and soles of the feet.  Lovely.

But not everyone gets it and even if it does happen, the severity seems to vary a lot and really bad cases aren't common, so that's good.

My nurse practitioner has me taking really good care of the skin to get it in as good shape as possible when I start.  And the 7-on-7-off schedule is supposed to help prevent worse side effects as opposed to the older 14-on-7-off regime.  So I guess we'll see. I know I tolerated chemo pretty well the last time in 2012, so who knows?  I may dodge the worst ones this time around, too.  

And, to be honest, if I have to walk around limpingly for the next decade with flayed palms and soles frightening children with my blistery hands and who knows what other kinds of side effects of various unpleasantness, it will be ok.  If it works for a while against the cancer, I can live with the rest.

Doesn't mean I won't whine about it constantly, because you know I'll do that!  But where there's whining, there's life, right?  (just try and remember that when I'm at my most obnoxious, ok?).

For those of you who find big words as amusing as I do: by now my cancer has beaten an anthracycline antitumor antibiotic, alkylating agent, tubulin-targeting therapy, an estrogen receptor blocker, estrogen receptor downregulator, cyclin-dependent kinase 4/6 inhibitor, 2 different aromatase inhibitors, and a mammalian target of rapamycin inhibitor.  But it has never seen the likes of Xeloda's thymidylate synthase inhibitor action before.  

And for those of you who have the sense of humor of a 12 year old the way I apparently do: Xeloda can be taken as a pill and not an infusion because it is synthesized in the liver into a compound called 5-FU which is the thing that does the thymidvlate synthesis inhibiting.  For my 5th treatment regime since my last clear scan in 2012, maybe sending the cancer a little gift of FU will be an auspicious sign.

We shall see...

A little better, a little motivation

Just a quick post this morning (getting ready for work and all) to say that with the weekend off, the sores are getting better and certainly more tolerable.  Thank goodness.

My diet has expanded beyond eggs and porridge and the pain is now situational rather than constant.  Such a relief!

I started back on the Afinitor Monday night (she said to do that when they were getting better rather than when they were gone).  So far still healing.  Fingers crossed that this continues!

Yesterday I also got back the results of my Ca27-29 tumor markers from my 2-weeks-on-Afinitor appointment and--surprise!--they were a nice steady 120!  That's basically the same as they were a little over a month ago when I stopped the Ibrance, had the 3 1/2 weeks off, and just 2 weeks of Afinitor under my belt.  I had expected them to go up with all of that and steady is always good, so I'm happy.  It may even make the mouth sores all worthwhile.

Hope it's the beginning of some good work from Afinitor!

Happy Wednesday, everyone!

A Rough Start

And for my next trick...

And the Lord said to Moses and Aaron, “Take handfuls of soot from the kiln, and let Moses throw them in the air in the sight of Pharaoh.  It shall become fine dust over all the land of Egypt, and become boils breaking out in sores on man and beast throughout all the land of Egypt.”

I've been taking Afinitor for 2 weeks now.  Math- and calendar-minded readers will notice that that was about a week and a half later than scheduled.

"Why?"  you might ask. Like Ibrance, Afinitor has to come from the specialty pharmacy and, as seems to be the way, there were delays getting the insurance to sign off on it.  You'd think I'd be used to that by now, but apparently my learning curve is a little slow.

But I did get it, finally, and started it as soon as it arrived.

Side effects:


Afinitor has some unpleasant potential side-effects, so I was hoping to dodge them all but not really expecting that would happen.

It didn't happen.

One of the potential side-effects of Afinitor is headaches (seen in 21% of trial participants). I started out with that one on the second day.

It wasn't the worst headache ever possible, but it hurt.  And it was persistent.  Very very persistent. This damn headache withstood Advil. It withstood Tylenol.  It withstood Advil and Tylenol.  For three long days it was there in when I woke up in the morning.  It was there when I went to bed at night.  And it was there every moment in-between.  But finally, on the fourth day, it broke and I've been headache free ever since.  Hooray for victories!

Another common side-effect is an itchy red rash (39% of trial participants).  On the third or fourth day, my upper arm started to feel like sandpaper.  I coated myself in heavy duty lotion to try and ward off anything worse, and that actually seems to have worked!  It's still a little rough and there are now some tiny red spots on my lower legs that I noticed yesterday, but so far so good.  I'll take it!

Also among the common side-effects is nausea (29% of trial participants).  That one came in waves on and off in the first week, but not so very nauseous, just a little.  And that one seems to have run it's course, too.  Hooray!

In that first week, I also had a little on-and-off fatigue (36% of trial participants) which resolved and some lingering dry-mouth (11% of trial participants), but nothing too terrible.

So after the first week, I was feeling pretty good.  "No big deal," I thought to myself, "this isn't so bad!"

Oh, foolish pride.

Because on the tenth day, I discovered the most common side effect (67% of trial participants): mouth sores.

Mouth sores:

Of course, I knew this was a possibility (ok, at 67% some might say likelihood), so I was taking precautions.

I was wrapping the pill in a thin piece of marshmallow before swallowing it (The internet recommended that to avoid contact with the mouth and throat.  I don't take something unauthorized or in high doses just because the internet said so, but it's a tiny bit of marshmallow we're talking about here.  And I am authorized to eat food, even health-free, smooshy food. So there isn't much harm in trying).

Swallowing gobs of mallow whole became my new party trick.

I also was swishing my mouth out regularly with baking soda/salt water rinse as a precaution to ward off sores.  I was even bringing a water bottle full of the stuff to work so I could continue my swish-fest during weekdays.

I don't really want to know what my co-workers may be thinking about my new found habit of bringing my water bottle into the public restroom with me.  Especially when we have a lovely kitchen with nice filtered water right there.  But my fear of looking stupid paled in comparison to my fear of mouth sores.  Turns out that was a good call. The only thing I missed was thinking it would prevent them.

Because on that tenth day, the couple sore spots in my mouth opened up and into painful sores on my tongue and the insides of my lip. And they've only gotten worse since then.

I could really use that mallow swallowing party trick, because I'm going to need something good to counteract this party-killer of having a mouth covered in sores.  It's not a very fun trick.


They hurt when I'm eating.  They hurt when I'm drinking.  They hurt when I talk.  They hurt when I'm doing nothing, to the point where they wake me up at night. And, of course, they're on the left side and on the right, so there's no avoiding them.

Here's the list of things that hurt to eat:

• acidic foods
• sugary foods
• minty foods
• hard foods
• hot (temp) foods
• hot (spicy) foods
• firm foods
• salty foods
• gritty foods
• crunchy foods

half the time even water hurts.

Things that didn't work:

I raided my local drugstore.  Twice.  Here's the list of things that didn't help:

• Biotene mouthwash
• ACT dry mouth lozenges
• Canker Cover
• Baking soda paste

Orajel Mouth Sore gel and the baking soda/salt water swishes each helped for a little bit, but not for very long.  And since Orajel can only be used 5 times a day, "not for long" was less helpful than you would think.

I also bought a new toothbrush featuring Thomas the Tank Engine (soft, small, and very rounded) and new toothpaste featuring Disney Princesses (gentle and bubble gum flavored, not mint).  Keeping your mouth very clean is supposed to help, but where there are so many painful areas to jab and strong mint hurts, too, it was getting kind of hard to do.
 

I went ahead and emailed my oncologist on Wednesday.  I needed to know how much was too much with these sores.  She said to keep swishing and phoned in a prescription for something called "Magic Mouthwash."

Magic Mouthwash is a mix of the active ingredients in Maalox and Benadryl with liquid Lidocaine.  It can be taken every 4 hours and makes your entire mouth completely numb (look, another cool party trick!) but only for the first half hour and then sort of numb for another half hour more.  It doesn't work for the full 4 hours until you can take it again, but at least that first hour is pretty good.  Which is something to try and focus on during the painful remaining 3 hours.

To the oncologist's office:

Yesterday I went in for my 2 weeks on Afinitor follow-up with one of the oncology nurse practitioners.  I was feeling kind of defeated.  Mostly because in the war against those damn mouth sores, I was being soundly defeated.

We talked about all the possible side effects I wasn't having or had gotten through.  And we talked about the mouth sores.  I told her how hard it was to eat or talk.  I told her how besides the sores I felt really good, but when it hurts to even talk, that's hard to live with.  I had read that a lot of people find the side effects get better after the first month and I told her I was willing to put up with anything for a time, but I didn't know how I was going to do this if it was going to keep on like this indefinitely.

She looked at my mouth and tongue, said "ohh, yeah," and went to talk with my oncologist.

Things I hope will work:

My oncologist told me to take a break from Afinitor.

Not for long, just until the sores are more healed and aren't as bad.

She told me to keep using the Magic Mouthwash (which feels a bit silly to call it because, quite frankly, "Magic" is overstating it a bit).  She told me to keep swishing with baking soda and salt water.

And when my mouth is better, I'll go back on the same 10 mg dose I had been on.

Where this stands:

So right now, I've only skipped one dose of the Afinitor.  The sores on my tongue feel a little better.  And the newer sores on the inside of my lip haven't opened up, so that's good. But right now, the biggest sore on the inside of my lip is still painful and throbbing, so we aren't all there yet.

But I get another swish of Magic Mouthwash in half an hour and more Advil, too, which should give me a break. 

And at least now there's new hope.  Because taking a break from Afinitor is something I hadn't tried yet and it sounds like it should help.  Plus my tongue feels a little better.  And that big sore is pretty big so it's not surprising that it could take a while (it's about half an inch in diameter.  Not a pretty look. But at least it's not on the outside. And the resultant fat-lip is a little Angelina Jolie-ish, so there is that.).

And I'm not dropping down to a lower dose, at least not yet.  After tanking on Ibrance because I couldn't keep on the higher doses, that's something I'm wary of, so that's a relief.

I really want to stay on this drug, and stay on it at a good dose.  Because, as unpleasant as this is, if Afinitor doesn't help, the next stop is chemo.  And it's not like chemo is going to be more fun.

Plus, Afinitor has some unpleasant potential side effects (trust me on this one), but cancer's side effect is death.  So that's worse.

And besides, if the internet is right, the sores could get a lot better after the first month.  Which is good, because I could use some different party tricks.

Another breakup, another blind date

Screen cap from Music and Muffins' video for Kate Nash's
"Nicest Thing." Now there's a beautiful broken-heart song for you.

On Thursday I had an ultrasound of just my liver to see how the tumors there are doing (turns out I was right when I said it seemed like the liver had moved to the front of the focus line.  With the liver stuff going on, those poor bone mets can't even get the time of day anymore).  

Yesterday my oncologist called to tell me that the ultrasound showed that there's some more measurable growth in at least one of the bigger tumors in my liver.  Fortunately, my blood tests show my liver function is still normal so it's not an immediate danger.  But it is a move in the wrong direction.

So that's the end of Ibrance for me.

As of yesterday, I am no longer taking those Ibrace pills I fought so hard to wring out of my insurances and specialty pharmacies.  I still have roughly $7000 of that stuff left over (which is only about 2 weeks worth, which is pretty crazy, isn't it?) plus a cool Ibrance pill case, but I'm going to have to toss them.  With Ibrance, I'm done.

Instead, in 2 weeks I will begin a different drug called Afinitor.  

As I was writing an email about the whole situation, it became pretty clear that if I just replaced "Ibrance" and "Afinitor" with a couple of guy names, it would sound exactly like I was writing about relationships.

Almost 2 decades after I found my real life love and settled down, I'm about to go on a blind date with Afinitor just 2 weeks after a bad break-up with Ibrance.  Roughly 6 months after being dumped by Faslodex.  And a year and a half after I had to give Tamoxifen the boot. Honestly, I really didn't enjoy dating when I was dating, way too much stress and unpredictability for me.  And still, here I am.

Ibrance seemed promising back in April.  On paper it was a good match: me with ER+ HER2- metastatic breast cancer, Ibrance: dashing around taking the breast cancer world by storm with brand new "breakthrough drug" status and a reputation for being kind. 

At first it was the little things.  A bad cold, some scary white blood cells.  We tried taking a break, dialing down the dose.  Things seemed better but it was getting hard to ignore the bad omens.  More growth in my liver, tumor markers staying about the same but never going further down (seemed ok at the time but in hindsight...).  I kept trying, telling myself maybe things weren't that bad, maybe they'd get better with just a bit more time. But things never got better.  It just had to end.

At least, as they say, there are other fish in the sea, and one of them is named Afinitor.

My oncologist has had patients do very well on Afinitor.  Some women online have, too.  There's lots of reason to be hopeful.  

So, as people do all over the world wherever there are people who date, I'm listening to a few sad songs, lying to myself I never liked Ibrance anyway, replaying things in my head trying to figure out what went wrong,and then, ready or not, I'll picking myself up, brushing off past failures, suspending my disbelief, and starting all over again with something new.

This is me, giving Afinitor half a chance to prove that even after everything that's come before, maybe, just maybe, this next one will be just the one I've been looking for.

What do you say, Afinitor, shall we give this thing a shot?

The upside of insurance issues

Van Gough - Portrait of Dr. Gachet
(who, I'll grant you, was not a medical
doctor, but I think it still works)

I know that over the past week, this blog has turned into insurance gripe central, you one stop shopping place for all things problematic with insurance and specialty pharmacies.

It's been heavy on my mind over the last week and a half.  But now that my new Ibrance pill case is filled up and I'm 2 days into smashing back my CDK 4/6 action with Ibrance, I feel like it's important for me to acknowledge the upside of having these problems.

I live in one of the few countries where Ibrance is currently available and I have insurance to pay for it.

And that's a huge bright side.

At least as of last April, the Ibrance list price was around $11,000.  Per month.  Approximately $523 per pill for the 21 day course. Or $392 per day for the 28 day cycle.  And that's not even including the unused 125mg and 100mg pills I had to stop taking and not restart when my neutrophils tanked.

But I have insurance to cover it.  And even with the 20% copay from my prescription coverage, because I have commercial insurance I have access to Pfizer's copay assistance card which knocks that down to $10 a month for most of the year.

And even at $11,000 per cycle, this regime is not significantly more expensive than the Faslodex I was on.  And it's not more expensive than chemo or radiation therapy.  All of which were also covered by my insurance.

I doubt its more expensive than whatever I'll be on next, which should also be easily covered by my insurance.

Cancer is expensive.  I'm really, really (really!) lucky to have good insurance that pays for most of the scans, pills, injected drugs, doctor's visits, nursing care, lab work, and lymphedema compression garments that I burn through on a regular basis.

Good insurance with a low out-of-pocket yearly max and low deductibles.

And I'm even luckier that this insurance is through my husband's work and not mine, since I'm the one with the cancer.


I read about the Affordable Care Act/Obamacare, Medicare and Medicaid, insurance exchanges, Social Security disability, and all that related mess of things.  I try to understand it, but honestly? I usually get overwhelmed and give up.  And I'm not a stupid person.  It's complicated stuff and I have the great good fortune of not needing to understand it right now.

I wish I had the answers.  I wish I could use this platform to clear everything up and we could all go off dancing in sunshine and roses. I don't have that.

And I think it's important to at least acknowledge that I do know and I do understand that for all the grousing I've been doing lately about insurance an pharmacies, at least I have them to grouse about.  I'm grateful for that.  And I know there are lots of people who only wish they had such problems.

(Also, I promise, I'm going to try and write about something that isn't a downer next time. Things around here are really quite good, honest!)