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.