Victorious

NC Wyeth, WWII

With this week's good report, I'm trying to be strutting around (on the inside) and feeling victorious.  I was genuinely feeling that way for a couple of days, but then I heard about a couple of people who aren't doing well and some things about a couple drugs in development that aren't that good and suddenly it feels like a weird thing to be feeling so great about a good report when I know I still have incurable cancer.

Maybe it's because every good tragedy has those temporary highs to key up the emotion before the great fall.  Hamlet had his "I gotcha" play within a play, MacBeth was crowned king and so was Oedipus, even Romeo and Juliet were married with a plan. And obviously every one of these characters fell.  And fell hard.

Maybe somewhere inside I'm sort of thinking, "well, if I can manage to avoid the glorious high part, the one where I think I'm all that because I have no idea what the future holds, you won't be able to go on with the part about the terrible downfall, right?"  I guess I forget sometimes that the author of my life isn't Shakespeare (you can tell, just look at my words, not very melodious and not a bit of iambic pentameter, or at least not on purpose).

Besides, we live in a culture that frowns on that kind of thing.  When I say, "Pride goeth before a fall," you're probably not thinking, "Who says 'goeth'?" Because, it's that familiar to us.

And so I need to keep keep reminding myself that I can celebrate this good news and not think too hard about the next scans or the ones after that or the ones after that.  My husband and I have a joke about getting the 10,000 steps a day: "How do you get 10,000 steps? You take 1 step 10,000 times!" (yes, we're really that corny, that's another reason you know the author of our lives isn't Shakespeare).  If I'm fortunate enough to live a decade it will be because I've strung together good scans 3 months at a time 40 times in a row, not because anything could made it so I could just relax and know I'm good to go for the next 5 years or so.  Stupid cancer doesn't work that way.  I just heard about a woman who made it 5 years on Faslodex and just now has progression--there may be rhyme and reason, but I sure can't see it.

But at the same time, who would want to look back over 10 years of beating cancer and realize that it was just ten long years of stress and worry about what the future held?  If I'm lucky enough to make it 5 years on Faslodex, do I really want that to be 5 years of fear and trepidation?

So I'm pushing myself to live in the moment.  Allow myself to feel victorious today and not to worry too much about tomorrow.  Go all Matthew 6:17 on this business and have a little party.

Sometimes my blog is pretty much just one long attempt to talk myself out of worrying (one more reason you know Shakespeare had nothing to do with this, he'd have let me go on this way for a minute, tops, before throwing in a comical secondary character and a few bawdy jokes to lighten things up already).

So instead, today, this afternoon, I'll be trying something different.  Today I'm going to be poking the universe with a sharp stick and pretending I'm not afraid.  And every time I think, "well, but..." I'm following that up with, "JUST STOP IT!"  Because I can't really stop bad things by tempering good things, that's just dumb.

Besides, you know what?  My latest scans were pretty awesome and physically I feel great.  So there is that. 

I'll have let you know later how this little experiment works out.

A very good day

Today I got my latest scan reports:

For those of you who don't speak cancer and/or radiology (and never mind the slight/slightly thing, because that is not what matters here!), it means the cancer hasn't spread in the last 3 months and some spots even seem to be getting better--this is fabulous news!

No guarantees what the next scans will hold, of course, much less the future as a whole, but for now and most likely for the next 3-4 months, it means stay the course and feel very happy, which is exactly what I'm going to do!

A quick one on exercise

I know I've been MIA for a while now, again.  I apologize for that.  I'm happy to say I am still doing well.

I've seen someone about some brain issues, probably lingering chemo stuff, not very likely directly related to cancer itself, thank goodness. I'm planning on blogging about that at some point.

Also have scans scheduled next week. It seems like I just did that, but fall is a busy time and it seems to make my days fly.

Probably speeding things up even faster is that this is my first stage iv Christmas and I'm simultaneously feeling the urge to celebrate how well I'm doing and to make it a good one in case next year is not as good or even worse than that.  For me, that mostly seems to involve baking and cooking.  And eating, lots of eating.

On the other hand, although I did take a couple of days off for Christmas eve and Christmas day, and 2 particularly busy days of prep the week before, I'm still getting my steps in most of the season and plan on continuing that moving forward. 

It's funny, because I've always known exercise is a good idea (who doesn't?) but I guess when an oncologist tells you something, it just carries a little more weight.  And for me, at least, that's made it much easier to be consistent.  And to get back up and try again the next day if I've had a particularly bad day.

I've been doing this step counting thing for 221 days now. It took me a bit to get into the routine, but I've now only missed the 10,000 step goal 9 days out of the last 190 or so (I love spreadsheets and tracking things, can you tell?), so that's something I'm proud of myself about.  As a kid I had a bad reputation with my mom for not finishing projects, and goodness knows I've had a number of self-improvement plans fall by the wayside over the years, so setting and actually meeting goals like this feels especially good.

I recently read this article titled, "Research: Breast Cancer Treatment Should Address Obesity," which has me again thinking more about exercise and cancer.  The article says a lot about exercise and quantifying how much it helps reduce the odds of relapse.  I know it's too late for me to worry about relapse since I'm already well down that particular path, but I have to think the benefit is still there. 

I don't know that everyone finds their oncologists motivating, and having cancer is stressful and I know for a fact that it doesn't always inspire the most rational thought processes (been there, done that, and oftentimes still at it), but I think it is a good idea for oncologists to talk about this kind of thing with their patients.  It runs the risk of sounding like blaming or piling on to add this discussion to the mix, even if it's addressed carefully (I often wonder if things would have gone better if I'd been exercising regularly immediately before 2012 or for most of the time between 2012 and 2014), but when you have cancer, you have so little control over what it's doing inside you that I really think it's helpful to have at least this one small thing that is in your power.

Anyway, Happy New Year, everyone! 

Halcyon Days

Autumn Leaves - John Everett Millais, 1856

Ok, fair warning, I'm feeling very introspective today.  Thinking on the meaning of things, time, and so forth.  I had my latest dose of Faslodex last week and that always leaves me feeling moody for a few days.  Please just take this for what it is, or please just feel free to skip this one and come back in a few days when I'm back to usual again.

__________

I'm living some halcyon days right now.

By all medical measures, I'm doing so well.  As I've mentioned before, my tumor markers continue to go down, my scans seem to be stable, I'm feeling pretty good, getting in my steps (just hit the 2 million mark this past week!), and even the pains in my hips have been there through 2 stable scans which I take to mean, whether they're arthritis or nerves or something else, at least they're not cancer.  Even the drug side effects are predictable and consistent, which makes them a lot less worrisome and a lot easier to deal through.

Halcyon days, indeed.

I have to confess, I needed to google that phrase to figure how how it's supposed to be spelled.  The way it sounded in my head, I had assumed it had something to do with Helios, the sun, but it doesn't really.  It's actually from an ancient Greek story about a husband who died at sea and wife who followed in grief, untli both were transformed into sea birds, halcyons--the 7 peaceful days were a gift her father, a god, gave her each year to lay her eggs on the beach.  I learned something new there.

I don't know where I first heard the phrase "halcyon days" (or read the phrase, really), but it always reminds me of some well loved Victorian children's books or something by Tennyson.  Knowing the story behind the phrase, I like it even better.  I like the idea that it's not just a label for sunshiney pleasant days between the darker times, but something more intentional than that.  An actual gift, a grace of peace to hold on to when the harder times come.  I like that halcyon days aren't just here and gone, but rather part of a cycle that will return when the time is right again.  It's still bittersweet, but beautiful, too.

I'm never sure just how to think about these kinds of days in my life.  I can remember very clearly thinking of that phrase, halcyon days, the summer my daughter turned one.  As I was watching her grow and change so quickly, I was acutely aware that those glorious summer days of spending our time together exploring and discovering couldn't last forever.  It's a notion that I think about often, as she and my stepkids grow older.  As my husband and I do, too.  Time continually moves on and, as it does, I'm usually left questioning if each lovely thing will be back again in one form or another, or if circumstances, time, and place will never quite fall together that way again and this time will actually be the last.  And at times like those, I'm usually left wondering why there would be such a craving for consistency in an ever changing world.  I honestly don't understand what God was thinking there.

I know I don't want to waste these halcyon days--here, now--worrying about the next storm, or at least worrying about what the future might bring.  I know with the cancer, like everything else, there's no real way to know if these particular days will be over in a few months or many years.  I know what the basic odds are, but have no way of knowing where my own life will fit in to them.  But I also know I don't want to look back at these times and regret that I spent so much of them worrying about what was next.

Occasionally I do get back to the mindset I want to be in, something like Matthew 6:27, "And who of you by being worried can add a single hour to his life?"  But, lets be honest, it takes a lot of effort for me to get past the feeling in my gut that if I don't worry about things, if I let my guard down and just enjoy the present, then some crazy universal all powerful karma enforcer will notice what I'm doing and punish me for it.  I know, when it's down in a sentence like that it sounds pretty crazy, right? 

I think that's part of why I really like the Greek story behind the phrase "halcyon days." I like thinking that halcyon days aren't a final peace to think back on when the inevitable troubles come but part of a continuous cycle.  That each year for a certain time, the storms will subside, the gale winds will calm and roiling waves will settle, and the halcyon bird that was once Alcyone will have a time of peace to line her nest and lay her eggs before the storms rise up again.  Every year.  Always. Like a promise.

As I sit here now, typing a blog post, listening to the sound of my daughter's keyboard as she writes an essay for school, looking at the blessing of a young woman the little imp of that summer years ago has been growing up to become, just as her brothers and sister have done, seeing the sunshine streaming in the windows of our snug little home on this chilly autum day after another summer has come and gone, I try to stay present in the blessings I have here, now.  I try and trust that it's safe to enjoy them and not worry.  And I try to remember that I've had in my life many halcyon days. There have been other times of storms and shadows, to be sure, but those, too, have been followed by different kinds of halcyon days. 

I know at some point I will reach the end of my time here, the same way the ancient Greeks did, the way the author of the book of Matthew, the Victorians, and Alfred, Lord Tennyson himself did, immortal as some of their works may be.  I like to think of Alcyone's bird children, born of those halcyon days, carrying on through life in times of storms and back again to halcyon days of their own.  Its's a cycle that includes them but neither begins nor ends with them.  It sounds a little sad, but I find it comforting, and beautiful, too.  A never ending circle of halcyon days dating back to the ancients and leading forward through the future until kingdom come.  A promise bigger than all of us, carrying forward through the ages.  And a promise, which right now, that I am very blessed to be a part of.

What hope looks like around here

These are the seeds I gathered from my garden as the autumn frosts moved in.  I have them all bagged up, labeled, and ready to keep over winter so they'll be ready to pot up and grow for the garden in the spring.  There are 4 o'clock roots I'll store in the basement and some pinched off pieces heliotrope that are sitting in a vase of water trying to sprout roots.  Once they do, I'll plant them in pots on my sunniest window sill to grow long and spindly until spring temps and sunshine come around again.

Of scars and bone

From Katie Thamer Treherne's lovely
The Light Princess illustrations.

When I was in high school, I used my own money to sign myself up for some adult beginner ballet lessons.  For pretty much my entire childhood I had wanted to learn ballet--never mind that the '70's and '80's were an era where the ideals of girlhood were more about sassiness and tomboys (think Paper Moon and The Bad News Bears)--underneath my '70's and '80's approved tough-stuff exterior, I longed for pink slippers and tutus so badly I could practically taste it. 

As instructed, before my classes began, I had gone to a local ballet shop and was fitted for a pair of soft pink Capezio ballet slippers.  And because it's not like I just started being a dork when I turned 40, after I brought them home, I spent a fair amount of time looking them over carefully, noticing the little pleats under the toe, the soft sheen of the fabric binding where the cord threaded through, the feel of that buttery soft, gently pink leather.  And it fascinated me that one of the slippers had a little scar in the leather, a tiny curved line healed over from a little cut where the animal must have brushed against when it had still been alive.

I was reminded of that scar again talking to my oncologist this past visit.  It turns out that our bones also scar.  With bone mets, the whole idea of NED (No Evidence of Disease) is a bit of a misnomer.  Even if my cancer were to be completely wiped away, the evidence would still be there in the sclerotic areas (abnormally dense and irregularly formed bone growth) growing in where the lytic (bone destructive) lesions had been.  Even if we were to get to a state where my bones were completely free from cancer (granted, an unreasonably lofty goal at the moment), like that little scar near the toe of my ballet slipper, my bones, in life or years after I'm gone, would always have marks that tell the tale of what has happened with me and this cancer.

The confusing thing is, as it turns out, new active mets can also be sclerotic, so sclerotic spots aren't always a sign of healing.  They can be healed bone scars or they can be the bones interacting with active cancer.  So they can be a great sign or a depressing one, depending.

So, back to those scans, the news is that I have several brand new cancer-related sclerotic spots (dense areas of abnormal bone) on my lower spine, a previously unremarked upon vertebrae, my right pelvis (along with the long-known mets there), and on my formerly thought to be clean other femur.  Most of my mets were mostly lytic (the kind where the cancer eats away at the bone), but now there are also many little sclerotic spots but in new locations.

Since new active mets can be sclerotic, the scan report included text about the new spots saying, "It is unclear if this represents response to therapy or new metastatic disease."  That's the sticking point, the newly dense mets are either a sign that the meds are working well or a sign that they're starting to stop working well.  How's that for clarity?

My oncologist, looking at all of this within context of not just my CT scans but also my bone scans (among the usual bright bone spots there were also some notably less bright than before spots--which is what my girl-detective self thought I saw) and my general cancer history, was pleased.  She believes these are healing areas of bone-destructive mets, rather that new cancerous lesions of the abnormal bone building kind.  Meaning her assessment is that things are going well and some of the cancer is dying a bit (I think that means that the new ones are assumed to have been there but not really visible when they were just missing bone and not dense built up areas, but I clearly don't have an oncologist's training or knowledge about these things).  So this was good news, but the kind of good news that sort of leaves you not quite sure if you should really celebrate or maybe that might be a bit too hasty?

The unequivocally good news was that there was still no evidence of cancer spread to my organs. That was nice.  But, despite my oncologist's assessment, the bone thing was hard to feel easy about.  I felt like I should be thrilled at a good report and celebrate, but in the back of my mind I kept thinking, "Well, but what if it is spreading and my meds aren't working any more and...."

So mostly I was happy, but also holding my breath, not quite sure if I should relax for a few months of relief (at least until the next scans) or remain a little wary.

Fortunately, a few weeks later, I received my latest tumor marker results in the mail and those are down, too, which is good.  In fact, the number is now nearly half what it is in April and actually now just a few digits above the normal range.  Mentally, that news was the confirmation I needed to breathe again.  The markers match the good news side of the scans, so it seem I really am doing well right now, or at least signs are pointing that way.

For those of you keeping track at home, I now have a mix of sclerotic and lytic mets in my skull, neck bone, mid-spine, a rib, lower-spine, all across my pelvis, and on both femurs.  But, thankfully, it seems my meds are still fighting the good fight. Way to go, meds.

____________

And, while I won't publish this post until I read it over again tomorrow, right now as I type it's Saturday, November 8, so Happy International Day of Radiology, everyone!  It's held each year on the anniversary of the day Wilhelm Conrad Röntgen discovered x-rays, which, using knowledge about them gained from Marie Curie's related work, allow us to keep tabs on my cancer and know whether or not my treatments are working without cutting me open, which I think is extremely miraculous.  Here's to you, Dr. Röntgen and Dr. Curie, well done!

Girl Detective (cancer edition)

2003 version of the relaunched Trixie,
properly dressed for the usual October
breast cancer awareness activities.

As a young girl, I loved "girl detective" stories.

Before I could read (or read well), my dad used to read Nancy Drew stories to me, it was our thing.  We probably went through 30-40 of those books, and loved them all, no matter how far fetched they may have been.  The very first chapter book I read myself?  A Nancy Drew mystery, of course, one that transported me over the course of a summer from real life 1970's Iowa to fictionalized 1960's Hawaii through an action packed mystery that--no surprise here!--the Titian-haired Nancy solved with her usual blend of pluck and cleverness.

Later I devoured the Trixie Belden stories after finding a 1977 reissued copy of The Secret of the Mansion at a local bookstore.  I loved those books (plus the Trixie Belden paper doll set I felt lucky to find in those pre-internet days) and was delighted to find the series reissued in 2003, just in time to begin reading them to my daughter.  Unfortunately, I guess they didn't sell well enough for most modern girls, because the 2000's versions didn't go past book 14 or 15 out of the original 39.  But still, my daughter and her best friend loved them and, between my old collection from the 80's, interlibrary loan, and her friend's Ebay treasures, they were able to enjoy the whole series as part of their very Trixie and Honey like friendship (typing that, it occurs to me that those names are really better suited to gun molls than amateur detectives, but obviously no one thought to check with me before naming them).

In between those 2 notable mystery series, I, of course, read all sorts of other mystery books aimed at young girls that featured teen "girl detectives" and the crazy villainous criminals they each had the bad luck to run into over and over (and over and over and over...) again.

It's probably not surprising, then, that somewhere inside my brain, there's still this urge to solve a mystery, even when faced with things I have zero actual knowledge about.   Last week I had another bone scan and another CT scan.  I'll get results next week.  In between is a 7 day long wait that is practically tailor-made for attempted mystery solving.

The creator of the Trixie Belden
mysteries also wrote some of the
Cherry Ames nursing mysteries.
In retrospect, I probably should
have focused more on those.

The CT scan does not make a good mystery.  For that one I just drink a lot of barium, get contrast injected into my arm, and wait for results with no indication at all of what they may be or what that might mean--aside, of course, from my usual failing attempts to "read" the technologists' expressions and find "meaning" in whatever happened to be the workflow patterns for that day (is that pause meaningful?  did they have me raise my arms above my head last time, and if not, why not?  what does that IV removal technique all say about the cancer in my bones!?!).  You'll notice, I didn't say I don't try to solve the CT scan mystery, I only said that it doesn't make a good mystery--not nearly enough clues (although I suspect Nancy would have figured it out, owing to her particular talent for knowing just what to ask and combining that with her skills at everything including, doubtless, skill as an amateur radiologist).

The bone scan, unlike the CT, has so many clues, if only I knew just what to look for!  For that one, the radioactive tracer works its way into my bones and then a  detector picks up each little gamma ray to form a dot on the study.  The isotope gets absorbed more where there is damage or healing, such as that caused by cancer in the bones.  The thing with the bone scan, though, is that, when turned on, the monitor in the scan room shows the dots in real time where I can view them!  And after the usual views, the technologist sends the images to the radiologist (who is, one hopes, an actual professional and not an extremely talented amateur like Nancy Drew), and the radiologist may ask for additional views where things look interesting.  How's that for clues falling right into my lap?

Last time I had a bone scan (June) the monitor was off, which was very unsatisfying.  But the one before that, in January while we were still working to diagnose the bone mets, I could very clearly see the hot spots taking shape.  When you hear about a PET or bone scan "lighting up like Christmas tree," that's what they mean--lots and lots of little rays clustering in different areas to form extra bright spots on the image.  And in January, I watched my hips, a rib, and a spot on my skull, all shine brightly, well before the rest of my bones had even taken shape.  What I didn't see clearly at the time were the spots on my femur and neck bone, but I guess that's why they let actual radiologists have a look and don't rely on me.

But this time?  I didn't notice all the hot areas glowing more than the rest of my bones.  My entire spine and the base of my skull looked pretty darn bright, which was scary until I googled and saw that that's how they look on many of normal scans, and maybe still something on my ribs?  Not sure what that glow was.  But what I don't know, unfortunately, is whether this lack of glow is a sign of good news, or just a matter of me not knowing a darn thing about reading diagnostic imaging?  Is it a sign that the cancer is, for now, slowing down?  Or is it like the spots I didn't notice in January, just a sign that there are spots I still didn't notice while lying on a scanner bed looking at a screen across the room out of the corner of my eye (yes, I know Nancy would have been able to make that work, but she could fill in for professional ballerinas and was a certified scuba diver, so there are actually a lot of things she and I don't have in common)?

I do realize I'm not going to be able to diagnose myself, plus there's a reason why the law dictates resolution for radiologist's monitors and it's the same reason why real radiologists have years more training than the zero I have, plus real radiologists will presumably also look at images from the CT scan instead of just relying on behavioral cues.  

I know that, in reality, I don't really know anything at all.  Well, anything except this: when I left the bone scan room in January, I knew I was in trouble.  I knew before my oncologist called me that what I had glimpsed wasn't good.  But now, even though I understand that the news could still be bad, despite knowing that at stage IV, good news is never a permanent state, right now, I still have reason to hope that the Faslodex, Xgeva, and Lupron are still doing what we hoped they would and I have hope that we will not have burned through those options just yet. 

Unfortunately, just like the tension-filled cliff hanger chapter endings in all the good "girl detective" books, I'm going to have to leave you (and me, too) hanging until I find out results next week.  When your dealing with amateur "girl detectives," isn't that always the way?

______________

*My High School guidance counselor, upon hearing that I planned to study physics in college, replied, "Oh, you want to be a lady physicist?"  That irritated me because what I really planned on doing was being a physicist.  Being a lady was unrelated.  In light of that irritation, I probably need to state clearly that I know full well Trixie and Honey would have just called themselves "detectives."  Although, Nancy, doubtless, was well above such quibbles herself.