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.

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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.

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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?

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*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.

7 months (or the natural history of breast cancer)

Cancer, chemo, and chocolate chip cookies

I read something interesting this morning.  I was searching for a chart I had seen a while ago and came across an article that included data I hadn't seen before about the "natural history of untreated breast cancer," which, at least in this context, means what happens if you just leave the cancer to do what it does and don't try and stop it.  I guess I don't really need to tell you, but, as it turns out, things don't go well when you do that.

For very obvious reasons, the patients studied for this were diagnosed between 1805 and 1933.  It basically looks at women who had breast cancer before there were treatments for breast cancer.

(On a related note, be aware that the article itself is over 10 years old and a lot has changed in the treatment of metastatic breast cancer in the intervening decade, so I wouldn't actually recommend reading too much into the facts and figures quoted in the rest of the article any more than I would recommend going right now to Blockbusters so you can rent that great new movie Moulin Rouge! on VHS to keep you busy while waiting for book 5 of the Harry Potter series to come out.  Especially because the stats reported on in the article were from a time when Tupac was alive and Friends was a new show on TV.)

But anyway, I had read some time ago that untreated breast cancer patients had a median survival of about 2.5 years from the time the lump was discovered to eventual death.  Turns out it's actually 2.7 years and this article reports some more figures I didn't know before, including that women with untreated grade 3 breast cancer (the faster growing kind that mine is) lived a median of 22 months--that is, half of them died in less time and half of them survived past that point.  Also, not one of the untreated grade 3 patients was alive 5 years later.

So, I am very happy to report that 22 months from finding the lumps, for me, was last February and, I can assure you, I am still alive.  Go science.  Better living--and just plain being alive--through chemistry is at work in my life.

February, you know, was winter, spring, summer, and newly fall crisp days ago.  Also 41 blog posts of varying degrees of stress, hope, resignation, and silver-lining-searching ago (wouldn't you know it, exactly, to the very day, 22 months after my first biopsy that confirmed my stage III grade 3 cancer, I posted this stressed out little post about my impending stage IV diagnosis.  Which, quite frankly, while a difficult and unpleasant time, was still better than being the day I died.)  And, it was also lots of nice, normal, going about life days ago--which is kind of a miracle given what would have been going on (or not going on) had I been born roughly 80 years before I was.

I have more scans coming up next month that will give us a better idea of what's happening now, but at the moment I feel really good.  And happy.  And definitely not 7 months in the grave.  And for that, and every single anything I've done over the past 7 months (including the stupid things like mopping the floors and playing Plants vs. Zombies, and also the fun things like vacation days, birthday parties, and dying parts of my daughter's and her friend's hair blue, because it all works together to make up a life), I need to thank my surgeons, oncologists, and all the people who brought us some really spiffy advancements in chemotherapy, radiation therapy, and hormonal therapy.

What have you done in the past 7 months that you're glad you didn't miss?

Where did August go?

Ok, it's been a while, hasn't it? Like all of August without a single other post.  And my last post a serious downer, too.

As you could probably tell, in the first part of the month I had some real thinking to do about where I am with this cancer stuff and how I'm dealing with it.  Part of the time has also been spent consciously dialing back on how much I'm focusing on cancer for a little while, reading about it a little less, staying off of online boards a little more, and generally trying to make it a smaller part of my life for a while.  

Which didn't, of course, include making oncology a smaller part of my life--I've been going to my medical appointments, taking my pills, getting in my steps, and doing all the things my oncologist tells me to do.  Because oncology is important.  Also because if I think cancer is tiresome when I am doing well...

But, as it turns out, August 2014 has been very good to me. 

In August I passed One Million Steps mark (at least since I started counting steps).  On that day my husband, daughter, and I walked down to our local gourmet cupcake shop and got a few treats to celebrate.  My lemon-drop cupcake was huge, buttery, and delicious (as it should be!).  I also bought a creamsicle cupcake to have the next day.  Because 1,000,000 is a big number.  And it looked delicious.

Also in August, we celebrated my daughter's 15th birthday.  It was a fun, lovely day with most of her siblings (including her sibling-in-law) here and a nice, low-key celebration the way she wanted. When I was first diagnosed with cancer, she was 12 1/2 years old.  Somehow, the 2.5 years between 12 1/2 and 15 seems like a huge leap, much bigger that 8 1/2 to 11 or 5 1/2 to 8.  I feel very privileged to still be here watching her make these continued steps toward adulthood.  

Cake and jello with family make for a happy birthday

In August, we also met up with my brothers, sister-in-law, nephew, and niece for a fun sibling day at the ocean.  It was a great, relaxing day filled with good food and good company.  With life, kids, and many relatives, I realized on that trip how rare it's been for me to have a conversation with my little brother--he's a good kid who's grown into an excellent grown up, and it was nice to have the chance to talk with him (nice to talk with my sister-in-law and brother, too, but that's not quite as rare).  Also, my daughter adored being the older cousin to the adorable little ones.

View from the beach

In August, my step-daughter was given the opportunity for a few days away from the store she manages to help set up a new store in the next town over from us, which meant she was able to stay with us for a few days while that happened!  It was wonderful to spend time with her for nearly a week of days and it seemed like old times when the kids were younger and had weeks at a time in the summer to visit.  We all did a lot of cooking, a lot of me walking/the sisters running, and whole lot of relaxing and just hanging out.

Grilled pizza--still working on technique, but off to a good start

A silly-fun thing from August: my husband and daughter conspired to create a new cover for the "back to school" issue of a Seventeen magazine (you'll recall I posted recently about the impact that had on my teenage years). It had a photo of me looking every inch the 44 year old I am, with headlines like:

"Kate's 7 tips for a happy and successful school year!"

and

"Fitbit: New secret tips for Champs!"

It definitely brought a smile to my face, and I thought it was very sweet that they read my blog and thought to do something fun with it.

Another thing in August, my daughter and I joined my sister- and brother-in-law who share our moderate obsession with "Dancing with the Stars" for an evening out at "Ballroom with a Twist" featuring Maks and Val Chmerkovskiy,  Karina Smirnoff, and Sharna Burgess.  They were really delightful bantering with each other and the audience, and the dancing was superb.  

Them doing that (here)--how can you go wrong?

What else happened in August?  Do you remember when I blogged about my garden and what the morning glories meant to me, especially when I was sick with cancer treatments in 2012?  Finally in August, the dark blue morning glory bloomed along with the light blue ones--those are my favorite, and I was glad to see it.

Another thing in August, with all the walking, all the treatments, all the benefits of the radiation in the spring--more than once I've actually found myself standing there thinking, "Hey, I feel really good!"  Not just ok for having cancer, but really feeling really good.  I don't know how long I'll be able to hold onto that, but right now it's a real treasure to feel that way.

And finally, not quite August, but last night, my moonflower bloomed.  I had mentioned them briefly in a post caption way back in April.  I love them.  I try to grow them every year.  Some years are charmed enough that I get some blooms, some years aren't.  Turns out 2014 is one of those charmed years.  But I guess I already knew that, didn't I?

Finally

So over this

I'm a little tired of cancer right now.

I'm tired of thinking about it.
I'm tired of worrying about it.
I'm tired of it being the first thing on my mind in the morning.
I'm tired of it being one of the last things I think about at night.
I'm tired of it being the reason I can't run.
I'm tired of it being the reason I must walk.
I'm tired of being stiff.
I'm tired of having hot flashes that never go away for good.
I'm tired of my hips hurting, presumably as a side effect from one cancer medicine or another.
I'm tired of wondering if my hips are really hurting as a side effect from one cancer medicine or another, or if it's cancer.
I'm actually just plain tired of cancer medicine, side effects be damned.
I'm tired of having short hair.
I'm tired of looking at myself and seeing scars and radiation damage.
I'm tired of wearing flat shoes.
I'm tired of wondering how many more summers, birthdays, hummingbirds, vacations, big dinners, holidays, firefly evenings, barbecued pineapples, and Wednesdays I'll have.
I'm tired of trying to live consciously and not waste too many moments.
I'm tired of thinking I should really do something important so there will be some kind of lasting meaning to my life and feeling like I'm "on the clock."
I'm tired of thinking that I should probably not stick my head out too much or say too much about what I want or hope for, in case when I'm not here it makes people feel bad.
I'm tired of thinking I should probably organize the photos and sort the junk in the basement in case it's too much for other people later.
I'm tired of wondering if my hair will ever get gray enough to dye.
I'm tired of being hopeful.
I'm tired of being cheerful.
I'm tired of not knowing what to say.
I'm tired of reading about cancer.
I'm tired of talking about cancer.
I'm tired of writing about cancer.
I'm tired of ignoring cancer.
I'm tired enough to be sick to death of hearing about people suffering and in pain from cancer.
I'm tired enough to be sick to death of hearing about people who died of cancer.
I'm tired enough to be sick to death of using phrases like, "sick to death" and then thinking about what "sick to death" really means.  Because cancer.
I'm tired of getting heart-wrenching mailings about events to raise money to cure cancer.
I'm tired of hearing heart-wrenching radio commercials about events to raise money to cure cancer.
I'm tired of having heart-wrenching thoughts about cancer.
I'm tired of knowing that if I'm not in church for a few weeks in a row people will assume that I'm near death.
I'm tired of feeling like if I'm doing well that people will start to wonder if I really have cancer or if it's really that bad.

I'm sure in a day or two I'll be back to cheery and hopeful and living full force.  Because that's what I do.

But I bet I'll still be tired of cancer.