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.

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.

Seventeen Magazine

Me in red, back in the day.

When I was 12, my mother started buying me Seventeen magazine.  She had read it when she was a kid and remembered it fondly.  I can still remember picking up that first issue, it seemed so grown up and sophisticated with fashion spreads, make-up tips, newsy articles and short stories.  As a 12 year old late bloomer, there was very little of me actually reflected on those pages, but that was hardly the point.  It was the possibility that mattered.

You would think something like Seventeen wouldn't have suited me very well.  I grew up learning survival skills like "keeping 'my place' is important for self preservation" and "displaying more than the minimum necessary self-esteem will be considered as a dangerous sign of rebellion and will be dealt with."  I knew from an early age that my mostly Lebanese features (and not the pert-nosed, doe eyed kind, either) in no way resembled the perky fresh-faced beauties that graced the covers in those days before the "United Colors of Benetton" told us all that ethnicity was ok.  I was hardly the country club set or even the sort that the country club set would bother to hang around with for comparison's sake.  And I was never one of the popular girls.  But still I loved reading Seventeen.

It may seem an even odder choice to those who met me by the time I was a senior in high school or in the first couple of years of college, when I was sporting punk hair and a wardrobe of Salvation Army selections as an outward expression of my inward "I'm damn well done playing a game I can never win" attitude (ironically, coinciding with the time I was an actual seventeen).  But as a younger teen studying each glossy new page, I believed.  I believed with all my heart and soul, and Seventeen was my bible of hope.

I believed that if I could just master the right make-up tips, maybe put together a few crafty room upgrades, get the right wardrobe essentials for my shape (stick) and personality (really quiet), figure out how to fix my personal flaws through the variety of useful tips gleaned from well considered articles and helpful quizzes, then I could somehow turn my life around and rid myself of the anxiety and disappointment that seemed to track my every step.  I was sure--deeply, determinedly sure--that the answer was in there somewhere and if Seventeen and I could just figure out where I kept going wrong, I could finally turn it all around.

Yes, I really was once that naive.

In those days before internet, every issue was valuable, but the highlight of the magazine year, the issue that I would study carefully from cover to cover and return to again and again, was the giant August back-to-school issue.  That issue, above all others, contained a bumper crop of self-improvement ideas just in time for the fresh start of a new school year.  If the regular issues hinted at the promise of better things to come, this giant issue screamed loud from the rooftops that change was possible and this very year really could be the year when I finally had "my best year ever!" (easily obtainable with just a little attention to my personal style, the 12 simple pieces that would update my wardrobe, some focused dedication to avoiding these 8 annoying habits, and perhaps a quick quiz to determine what my favorite color said about me).

For me, in those days, hope really did spring eternal and self-acceptance was nothing more than a foolish distraction intending, unsuccessfully, to waylay me on my path to a better life.

Strangely, after a having couple of days to let it settle in, this news from my oncologist that I'll probably never run again feels a lot like giving up on the Seventeen dream.

In high-school I ran track, in college I ran track and cross country.  I made good friends doing that and found a slightly healthier outlet for my compulsive drive toward self-improvement and belonging than my previous focus on being "as good as" the girls on the pages of Seventeen.  In various stages of my adult life since, I've gone out for a run and, in doing so, once again was remembered what it was like to be young with the world rushing past me.

But, truthfully, my last college workout was the last time I ever seriously committed to being a runner.  And my last semester of college was the last time I ran regularly for any length of time.

It's not that this news about not running has really stolen that much away from my actual life.  It's just that it's nibbled away a little bit of promise.  That little voice inside me that whispers, "Hey, I could do that again, it's possible!" is now is followed by a sightly terse, "No. No you can't."

I will make peace with it, of course.  I will continue walking. I will cheer on my daughter as she runs, enjoy hearing about my brother's track team, and the 5Ks and half-marathons of family and friends.  I will take pleasure in all the things I can still do and remember that I'm lucky to be alive and lucky to have only minor cancer-related restrictions at the moment.

But it may take me a little while to get comfortable with the understanding that this particular hope for what my future might hold isn't going to be.

Still, August is just around the corner, and who knows? Maybe this year will turn out to be "my best year ever!"  Only this time it would be on my own terms.

About that running thing... (this month's update)

William Rimmer - Flight and Pursuit

I went to oncology today for my monthly check in and injections.  Fortunately it was another good visit.

Most of my numbers look good.  No tumor markers for today yet (those take some time to get the results on) and my white blood cells are continuing to drop downward, which isn't great, but the thinking is that that's due to the radiation therapy and it's effect on the marrow in the several large bones that were radiated.  They're doing a WBC panel to better see what's going on, but, especially coupled with last month's stable scans and the dropping tumor markers, it doesn't seem to be really worrisome.  I guess I'll need to dig out the Purell supply I laid in the last time this happened and try to stay clear of sniffling people.

But since I'm feeling well, with only some hip and back pain that was there before the good scans, etc, and isn't getting worse, it was a lot of "keep it up!" and not a lot of worry.  I've had my share of the worry filled kind of appointments, so I'm just going to take this one and enjoy it for all it's worth!

While I was there, I asked about biking and running, and that didn't go quite as well as I had hoped.  The consensus is that biking is ok as long as I don't fall off, but running is definitely out and is not likely to ever be back on the table, at least not in the foreseeable future.  Looks like my "Couch to 5K" dream will need to be truncated to just "Couch," as the 5K part is not going to happen.

From what I understand, with impact absorbing bones fragile with cancer, and radiation therapy adding brittleness to the mix, high impact activities are just too risky.  Yep, that's right, I'm still a delicate flower.

I didn't exactly expect to get the go ahead today, not while my scans are still showing activity (my "stable" scans last month mean that the cancer isn't spreading now, but it doesn't mean the lesions are gone or healed at this point), but I was hoping they might tell me that it was likely in a few months maybe.  Instead, I was told it was unlikely that I'd ever be cleared for high impact stuff.

But, know what?  I'm actually ok with that.  I'm enjoying my walking and I definitely don't want to trade that in for a hip fracture and indefinite bedrest, pain, and rehab just because I went for a run.

Plus, not only do I feel better than before I started walking, I also saw today that my pulse has been dropping each month since I started the 10,000 steps a day in May--for many months before that I'd been having the same conversation with different techs:

"Is your pulse always, um, kind of high?"
"Yeah, it's always like that, Dr.___ is ok with it."
"Oh, ok, 'cause it's kind of scary high."
"Yeah, it's always like that."

But last month my pulse was right on the edge of normal-high and today I've dipped into the normal range, so that's nice (not to worry, my blood pressure, thyroid, and weight are fine and my doctor isn't worried, my pulse is just sort of naturally scary high, or was anyway).

Also, gentle biking is back on the table (as long as I just don't crash).  And I've been muttering through some Nordic Track workouts lately when the weather is bad, which is sort of like running in a throwback workout kind of way.  And I could also do an elliptical workout or other things like that if I were to rejoin the Y or something, so there are still lots of options, just no high impact options.

I guess a big part of adulthood is realizing that most of life is filled with tradeoffs.  That's certainly true in cancer care.  Side effects in return for more time alive?--I can deal with that.  Can't run but get to walk and live fracture free?--that sounds like a pretty fair trade to me.

Half a million

The view from Georges Island  - We went there on a day off
because it is both beautiful and walkable.  20,000 steps that day!

You may remember back in May how my oncologist recommended I get more exercise and suggested I try and walk 10,000 steps a day (if you don't remember, the post is here).  At first, 10,000 steps a day was an effort.  And that's putting it nicely.

But, despite whatever grousing you may see here, in all this cancer stuff I do try and be grateful for everything I can do that helps fight cancer.  With that (and the fact that my smart oncologist said to), I've worn a pedometer every day since and made the 10,000 steps a day goal my own.

The rest of this post comes awfully close to a long brag, so unless you already love me and my family, this may be a good place to call your post reading done for the day and congratulate yourself on good a decision.  But, if you do love us or are exceptionally brave, well, here we go!

Last week, I hit day number 50 of this walking 10,000 steps a day effort.  I haven't always hit the 10,000 point each day, especially in the beginning, but my average over those 50 days is above 10,000.  Which means--get this!--since May 22 I've taken over 500,000 steps.  Half a million. Crazy, right?

A few weeks into it, I bought a FitBit to replace my mechanical pedometer.  By then I'd proven to myself that I was pretty committed to the walking, and the mechanical pedometer kept periodically jamming which was frustrating (to say the least).  I'm finding the FitBit more accurate than the pedometer I was using, plus it doesn't click when I walk (annoying at work), and not only does it call me "champ" when I hit my goals (love that), it also tracks lifetime stats--so without a lot of effort, I can now tell you that since I began using the FitBit, I've walked 120 miles.  That's spread out over a number of days, of course, but it still feels pretty cool!

To be fair, many of those steps and miles were steps and miles I would have taken anyway just going about my day.  But I've found that I can't get 10,000 steps just going about my day (even if I park a few spaces farther, or make a couple trips to the photocopier, or make separate walks to the printer and inbox instead of combining them into one trip), but instead, for my lifestyle, it requires the extra effort of going out for a walk daily.  So, I still feel pretty proud of myself for accomplishing this goal.

Well, proud of myself and also grateful for my family.  I mentioned a few weeks ago (here, if you want more info) how my husband helped me get the steps on a particularly bad day--every day since that day I've had the company of my husband and/or my daughter on these walks (and when she was over here my grown stepdaughter, too).  They're consistently good cheerleaders which is immensely helpful. My mother-in-law has begun tracking her own steps which is pretty cool, and, especially because she knows what goes into getting those steps, she tells us regularly how impressed she is that we're doing this, which also feels pretty good.

All this "way to go" attitude has been good for me and I obviously enjoy it. But, for someone like me who tends to mistake urgency with importance all the darn time, even more important has been my family's attitude that getting the steps in is important and how they've made it a priority.  Because, in all honesty, even knowing it's important, without their support it would be way too easy for me to say, "Eh.  Today I [am busy/have a lot to do/feel tired/(whatever other excuse you can think of)], I'll just skip it today and try again tomorrow."  I can be kind of lazy that way, especially when in the moment.

And it is important that I get some exercise.  Aside from the general knowledge that fitness is good for  people (even people like my cancer-free husband and daughter, actually), there have been lots of studies showing that women who have breast cancer and who exercise tend to have better outcomes than those who don't.  You may have seen the flurry of news about one such study that hit mass media a few weeks after my oncologist made the recommendation (one such article here).  I wish I could say exercise was guaranteed to cure me, but the best I can say is it might help and it certainly won't hurt.  Which is actually still good enough to make me think it's worthwhile to do.

And, truthfully?  I'm really enjoying it.  I love the time with my family.  I love feeling a little fitter and a lot better (really, I do feel healthier now and walking is no longer embarrassingly difficult for me, which is definitely progress).  I like the feeling of achieving a daily goal. I like being out on the town track with all sorts of other people of all ages doing similar things, and I like being there looking pretty much like everyone else because when I'm walking I'm cancer patient incognito. And most of all, since I don't actually know how to cure cancer, I feel better being able to take action myself on something that might be helpful (in addition, of course, to the Faslodex, Lupron, and Xgeva that others prescribe and inject into me--I do my "show up for it" job really, really well, but that's not the same thing, obviously!).  And, I suspect taking whatever action we can is part of what my husband and daughter are feeling, too.  There isn't really that much we can personally take the lead on to fight this cancer, but this is the thing we can do, so we are bound and determined to do it.

Want to know something crazy?  I've lately been wondering, assuming I stay stable or show regression and regrow some bone, if I might someday be able to work through a "Couch to 5k" program and sometime in the next few years run in a 5k road race.  I would need to get medical clearance before taking on high-impact stuff like running on these cancery bones, of course, but who knows what might be possible?  Besides, I've read that running may be even better than walking for breast cancer survival....

(Edited to add:  My husband read this and thinks I'm not bragging nearly enough, so let me assure you, I'm all kinds of "FREAKING HALF A MILLION STEPS AND KEEPING THE 10,000 THING UP FOR 50 FREAKING DAYS!!!!!!!!  EEEEEEEEE!!!!!!!" but on the inside, of course.  Well, mostly on the inside.  Well, sometimes on the inside, anyway.)

Again with the garden

Heliotrope: Too poison for rodents, too textured for
slugs, and still it smells lovely in the evenings

Remember a couple of months ago I wrote about the garden I was planting this year and how I was trying to stop putting things off?  (here)  Since writing that in early May, the weather has warmed (maybe a little too warm) and summer has come.   All my little windowsill seedlings are long since gone from my windowsills and sent out to the garden to take their chances with the uncertain world outside.

Unfortunately, as it turns out, the world outside has not been very gentle with them.  The very first week some kind of animal (chipmunks or rabbits, probably, I've seen both around from time to time) decided to eat all my broken plate 4 o'clock seedlings, all my moppy white snowdrift marigolds, 11 out of 12 of my summer berries scabiosa, and 11 out of 16 of my 2 types of zinnias.  It was a massacre out there, no doubt about it.

After the first strike, I sprayed liberally with Havaheart Deer-off (promising to repel deer and rodents, not, I should note, purchased because I was feeling like "having a heart" at that moment, because I really wasn't. Not at all.).  Deer-off, all promises aside, didn't seem to do much at first and the carnage continued, but eventually either the rodents got sick of Deer-off flavored seedlings or they found better things to destroy somewhere else.  At any rate, the 1 remaining scabiosa and the 5 surviving zinnias still live, so at least that's something.

It was depressing and maddening and not at all what I planned to happen.  That sort of thing seems to be happening a lot to me lately (Hi there, cancer, did you hear me say that? Yes, I meant you.).

After I got done screaming (figuratively, not literally), I ended up plunking more dirt in some seed trays and planting the remaining 4 o'clock seeds and some lunaria seeds that I had gotten as a freebie a few years ago (it was too late in the game to replant scabiosa or start again with giant marigolds).  I then went to the garden center and purchased some thick, healthy vanilla marigold seedlings (kind of like the snowdrift ones, but not as mopsy) and some heliotrope that I'd never heard of before.  I sprayed them 3 or 4 days in a row with Deer-off because by then it was like a talisman for me.  Also because I was already psychotically dousing the zinnias and that poor lonely scabiosa with it daily, so it wasn't much effort to get the other plants while I was at it.  And I laughed with evil glee when I read that heliotrope is poison to most animals and they tend to avoid it.

(And yes, I do know that a smarter woman would have probably skipped the marigolds and 4 o'clocks entirely instead of going for exactly the same darn things that got devoured last time.  All I can say is I wanted them so badly that I thought I might as well give it one more shot before giving up their ghost.  Besides, how much did I really have to lose at that point anyway?)

For reasons I can't explain, the rodents never even tried to eat the new marigolds and things seemed to be turning out safe enough for the new 4 o'clocks and lunaria (I'd like to thank Deer-off, but since it didn't save things much the first time I'm not really convinced it suddenly upped its usefullness now, but one can hope).  That was until I found out that slugs really, really like lunaria.  And vanilla marigolds. And also the purple nicotiana that I had previously thought was safe since it seemed to be of no interest to the rodents.

Those stupid slugs look relatively small and not very fast or smart, but, especially in large numbers, they can take down a ton of stuff in very little time.  My lunaria were mostly leafless, my marigold buds were half gone (not half the buds, half of each bud, which makes the blossoms look lopsided, nasty, and very obviously slug bitten), my nicotiana looked like Swiss cheese and never got any bigger because every time it made one small bit of progress, the slugs made two.

And again I was depressed and dismayed and kind of ticked off that no matter what I did, half of everything seemed to be failing and my stupid, beautiful garden plans were rapidly spinning into nothing more than a tasty treat for an ever increasing army of rodents and slugs.

But then I thought about these:

The crazy half-double petunias (or maybe double petunias, they look more double to me) that I'd never gotten around to planting last year and was determined not to put off again this year were blooming.  And no one was eating them. And they were making me happy and unreasonably proud.

So, after screaming and stomping my feet and shaking my fists didn't scare away the slugs (the neighbors are probably a different story...), I turned into slug hunter.  I bent over the garden in the mornings and again in the evenings, picking off the white slugs, picking off the orange-brown slugs, digging holes to sink in cut open soda bottles filled with beer (I'm told slugs like beer and the yeast smell lures them, if not maybe free beer will at least win back the neighbors).  Finally it looks like the slug population is dwindling.  My plants are starting to grow faster than the slugs can take them down and my slug hunting isn't turning up that many of the nasty slimy things anymore.  There are, of course, plenty more slugs in the world, but for now I seem to have the upper hand.

So now I have this:

And I have hope that the various remains of my poor ravaged garden will finally recover and grow and maybe, eventually, have more blossoms for me.

And, because metaphors are almost as much fun for me as imagining rodents grimacing and running off making gagging noises after eating Deer-off drenched 4 o'clocks, I'm sure you can see what I'm reading into this.  Plans getting thrown off over and over and over again; dealing with one problem (rodents, stage III) only to have to jump right back in with the next problem (slugs, stage IV); trying to keep one step ahead; and very consciously doing what I can to try and move past the setbacks.  And, hey, at this moment I'm winning on both fronts so that's something good.

Plus, for what it's worth (for those of you who read the first garden post), so far nothing at all seems to be bothering my morning glories.  No blooms yet, but they're vining all over the place and pretty morning flowers shouldn't be that far away now.

Tumor Markers (or more good news!)

Chagall - Dance

This weekend I spent a day with a bunch of fabulous ladies who I've been friends with since my days as an overstressed and insecure undergrad (yes, that's right they knew me when and like me anyway, how about that?).  It was a wonderful time, and, truth be told, it was also just what I needed.  I've been a bit of a stressmonger with all this cancer stuff, and hanging out with old friends chatting, eating, and mulling over life was really nice.

And, you know what else was really, really nice (and cancer related)?  While I was there I got a call from my husband telling me I got a report in the mail from my doctor with the results from a recent tumor marker test which, like my scan results, point to good news.

I had gotten a blood work order in the mail in late March or early April that indicated I'd be getting the usual cancer blood work and also something called CA27.29.  At the time, reading the list of tests, I had actually assumed this CA business was something to do with calcium--not true, but what I thought at the time.

In fairness to myself, Ca is the chemical symbol for calcium and bone mets can put too much calcium into the blood because it dissolves the bones and Xgeva can leave you with too little calcium in the blood because keeps the bones from dissolving in a superpowered kind of way, so it wasn't that crazy a guess (or at least that's what I tell myself).

I really do try not to get my cancer knowledge unquestioned from the internet, but of course I later googled it.

It's obviously true that I'm not an oncologist and also true cancer doesn't give you super cancer knowledge because it turns out CA 27.29 has nothing at all to do with calcium.  The CA actually stands for "cancer antigen" and, as it happens, the test checks levels of a specific something that cancer can give off into the blood (for anyone interested, the best website I found on it is here).

I'd read other people posting about "tumor markers" and it turns out that these are what they were talking about--who knew?

So, not to belabor the point (or at least not to belabor it more than my belabor loving self can't help but do), I had the same test again on my blood work order for June and I got a report in the mail last Saturday.  The report listed my CA 27.29 lab report for June and a note from my oncologist:

This tumor marker came down from [number here] in April--Looks good

I'm still not an oncologist, and I do understand that at some point things will most likely change and we'll need more and more different treatments and "out of the woods" isn't something that happens with metastatic cancer, but when my oncologist says "Looks good," well, what the heck, I'll take it!

Magic comes with a price

Katie Thamer Treherne - illustration from
A Little Mermaid

Yesterday was not my best day ever.

I had my Faslodex, Xgeva, Lupron last week.  I'd even been upgraded to a 3-month dose of Lupron (1 injection, more medicine, lasts 3 months before needing the next injection), so for my next 2 visits I'm down to only 3 injections (Faslodex is 2 shots per dose).  So that's cool.

But in addition to the usual bruses, aches, and soreness from the various medications, and the physical side effects that are part of their life saving action, I've been noticing for a while that in the days after I get them, there are other side effects as well.

For one thing, they mess with my sleep.  Fortunately my oncologist has other things to help with that.  But, I've also been noticing more recently that they seem to also make it harder for me to be resilient emotionally.  I find myself less able to process stressful words, actions, events, right after I get the shots.  And I don't think that's something my oncologist can help me with.  So yesterday I was feeling that.  And even understanding that there was a chemical contributor, it was still a hard day.

Have you ever noticed that in some children's books magic is treated as a free gift with no-strings-attached, while in many, many others magic always comes with a price?

Mary Poppins is the free gift kind of magic, as she comes flying in out of nowhere to add interest and adventure to the lives of the Banks children.  Even when she flys out again, there's sadness, of course, but no one is the worse for wear, and there's even the promise (in French, in the book version anyway) to return again.

But in many other books and stories, when there's magic there's a bargain to be made, be it some sort of trade, tithe or blowback right from the start, or some sort of later discovered change or enslavement that turns out to come with all that power, or the dawning realization that the power or the situations you created with your magic because you thought they would be so lovely aren't all that lovely after all.

Medicine is kind of like that, too.  Some have side effects so minor that all you really get is win, but others have short or long lists of side effects and, like magic in books, the balance comes in determining if the reason to use the magic/the condition you need to treat with the medicine is worse than the side effects themselves.

I don't really find myself regretting the side effects of my medicines.  Especially after those nice stable scans that I also found out about last week, I'm feeling pretty warm and rosy about those little injectable buggers.  But they do have their price.

It's not as bad as the price of chemo, of course, and one of the biggest reliefs of the good scans is that it means I'm not back on chemo today.  Someday I probably will be (I'm learning to accept that), but I'm plenty happy that that day is not today.  Also, the permanent side effects from my previous chemos are really, really minor and managable, so that's also good.

As I heal up from the side effects of the latest radiation and am able to comfortably go for those 10,000 steps, I don't regreat having done that, either.  It occurs to me often as I go for those walks or tend my growing garden, or even use stairs easily on a regular basis, that those were the reasons I chose to get the hip radiated and here I am doing those thing, just like I wanted! 

But yesterday I wasn't feeling so jubilant.  And lack of jubelation was snowballing.  Among other stressful things to my resilliance-free self, I had not gotten in my 10,000 steps the day before (lots of driving and people over, so not bad reasons, just reasons) and had intended to make up for the missing steps by doing more yesterday.  But the worse I felt about it, the less I was able to just get up and do it, and the more time passed when I hadn't been able to get up and do it, the worse I felt.

Finally, my husband came home from work and I was at a paultry 3000 steps.  Not, necessairly the biggest deal in life, of course, but the walking is a "medicine" whose only real unpleasant side effect is time.  And it's something my oncologist recommended.  And it could help.  And it's something I can do, I can control in as world where the cancer seems to say "I'll do whatever I damn well please and there's nothing you can do to stop me." Which we deal with using "There are some major side effects but we hope it will slow down the cancer whose major side effect is death" medicine.  So getting in the steps feels really important.

And there I was at 3000 steps, failing at something important.  And that, tacked right on to my increasingly long list of other things that weren't being dealt with, seriously stressed my lack of resilience.

The crazy good part of all this is that when my husband came home from work, he suggested we take care of that walk right then and there, just go out and do it.  So, we drove to the local track (yes, we did drive out so we could walk) and together we walked around and around and around that track until we reached the 10,000 step point.

Instead of being a death march, walking with my guy on a summer evening, with other people coming and going and doing their own thing, watching the sky turn golden pink, seeing the birds and bees flit around in the overgrown border of weeds and wildflowers, it felt precious.

And, somehow, wasting the day and pulling it through at the end, against all odds, also felt important.  More important, even, than being virtuous all day and not needing to grab the fat out of the fire would have felt.  I guess it's because life is that way a lot of the time, crappy things happen, or are said, or come up as a consequence of something else, and sometimes resilience is in very short supply.  Yesterday I was coming up short on so many things, but we were still able to make good on a bad day.  It was like, for that day, with his help, the greedy gods of cancer and the dark price of magic were unexpectedly, at the very last minute, actually appeased.

With the work accomplished, we went home.  My husband baked chocolate chip cookies and my Fitbit dashboard called me a "Champ".

And I felt a whole lot better.

Good news!

Cliff Chiang's Wonder Woman

I got my scan results today and despite the hip pain, despite my fear, my cancer is looking stable, which is excellent news!

It seems a bit strange, I suspect, to people not dealing with cancer like this, because basically my scans told them I have cancer in a number of bones, but it's the same cancer in the same bones and not cancer spreading to new places.  It's not in new bones and it's not in my organs, so that's very, very good news.  Cancer gone would be nice, but stable is the name of the game and stable I am!

I'm thanking God tonight, that's for sure!

I was thankful to get more injections and be able to continue getting the injections.  Thankful to look at the paltry number of steps I've gotten in today and plan to go out when the heat abates to try and sweat through to 10,000 steps for another day.  Thankful to set my alarm to wake up and go to work and not  have to plan to add chemo to my schedule.  Thankful to take a little Advil for the hip thing since I'm no longer wondering if I'll need to stay off blood thinners so they can insert another port for infusions.

I'm sure I'll be back to complaining soon enough, but it would really take some doing to bring me down tonight, that's for sure :)

Post 48, In which I am Jacob (sort of)

Paul Gaugan - Vision after the Sermon

It seems like some bible stories get a lot of play both in and out of a religious setting (Noah, I'm looking at you!), some seem to never, ever come up in or out of churches, and some are just sort of "also rans" in the world of bible stories.  I think the one about Jacob wrestling with God (or an angel, I think it depends on the translation) is one of these "also rans," but it's one I've been thinking of a lot lately.

For those of you who didn't grow up with Arch books and Taylor's Bible Stories (which, let's face it, is probably all of you except my brothers and I) and are not fascinated by Puritan naming traditions or fangirling on the Mayflower passenger Wrestling Brewster (which, let's also face it, isn't going to be a lot of you), although I trust some of you still know about Jacob wrestling, let me give a very brief summary:

Jacob stole his twin brother's birthright, ran off to another land, worked for the right to marry one girl but was tricked into marrying her sister, worked some more and married the girl he wanted to marry, had a ton of kids through both sisters and their maids, stole some more stuff from his father-in-law and ran out in the middle of the night to return home to his presumably still really ticked off twin brother. 

On the night before he was to cross the stream into his brother's land, he sent his family across and spent the night alone.  Some strange man came up and fought with him but neither of them could overcome the other and, at dawn, the stranger tapped his hip and put his leg out of joint.  Finally they agreed to stop, Jacob demanded a blessing, the stranger revealed himself to be God (or sent by God) and blessed Jacob, but his hip never did get better.

I can see why this one is in the "also ran" pile, it's kind of a weird one and hard to make out exactly what the heck it's supposed to mean.  Good thing I blog about cancer and not biblical studies, because I'd totally throw up my hands and shrug over this one.

But, as I've mentioned before, even though my cancer is in a number of bones, it's really only my hips that have been painful and fragile enough to require me to remember not to do certain things. Radiation for me is not curative but just palliative (to kill enough cancer to stop the pain), and the radiation therapy I've gotten at stage iv has only been to my left hip.  And while I was feeling better for a while after that, in the last week or so, I'm feeling pain again not in the left hip but, this time, in the right.

So, lately I've been thinking of Jacob and God putting out his finger to give him life-long pain in his hip and wondering what it all could mean.

With cancer, probably at any stage, there's a lot of wrestling with God (or the universe or fate or whatever for those who don't believe in God).  I wish I had some idea what it all meant.  Why am I the one who puts my family through this? And why them? What have I done that I'm the one wondering if I'll live long enough to see how things turn out?  Why would anyone pick my sweet husband to be widowed and these kids to have to deal with this, my daughter to be motherless?  It's, to put it frankly, a pretty crappy thing.

I wish I could be like Jacob and just demand a blessing and limp over the river at dawn to a spiffy new life in a new-old land (at least until the whole Dinah so his sons murdered everyone in town, followed by the whole famine and Joseph sold to Egypt thing, which is another popular one, which I know because even my public middle school did a production of "Joseph and the Amazing Technicolor Dreamcoat" back in the day, so you know that story's made it to big-time).  And maybe I will end up with a great outcome, because, afterall, who knows?  It could still work out great.

But the new hip pain worries me, because, while I don't know the cause right now, new pain is not a good sign and could often indicate that the treatments I'm on are not doing a terrific job of keeping the cancer from continuing to grow.

Unlike Jacob, of course, I do have medical imaging and the combined forces of research and oncology on my side.  I had a bone scan and a CT scan last week, results to be discussed this coming week, so I'll have a few more pieces of the "what does this all mean" puzzle soon (at least in the physical sense. I don't know what kind of image it would take to clear up the spiritual questions but whatever it would take would probably net a pretty penny on Ebay).  Also, where this is all going to go in the end isn't something scans can tell me right now, although they should do a good job of helping decide whether we'll stay the course or go to something harder.

Modern medicine could have totally fixed Jacob's hip, or replaced it, or whatever.  But the story would still be really strange because a medical diagnosis wouldn't have answered the bigger questions like why God picked a fight with him and damaged his hip in the first place and what it was supposed to mean (it also wouldn't have kept him from being kind of a jerk and stealing from all kinds of everyone and being a really dysfunctionally bad father even after all the blessings he got, but that's going to have to be someone else's blog topic, not mine)

For those of you who've followed this whole indulgent post and have managed to keep your questions about brain mets to yourselves, thank you (and, for the record, brain mets are unlikely right now, not enough symptoms).  For those of you desperately looking for the exits, here's the TL;DR version:

My other hip hurts and I don't know why but I had some scans.  Also, I'm having trouble figuring out what it all means in the physical and universal senses.

More news later this week.

In the space between angels and decades

Dante Gabriel Rossetti - Sir Galahad and an Angel

As I've mentioned before, there's an online stage iv breast cancer forum that has become a place of respite for me.  I've been reluctant to take the time away from my family and real life to go to an in-person support group. And at stage iv, I'm even more reluctant to attend a local group since they're for all stages and I'd be the evil hybrid combination of momento mori and "but for the grace of God go you" come to life--it might be instructive for others but most likely it would just be frightening, and either way it would be singularly uncomfortable for me.

Plus, since I'm not even a very nice person, I would probably find it a little irritating to listen to people who beat this thing when I did all the same things and didn't.

I think we'd both feel a little better if I just stayed away.

But, through the magic of the internet, I can go online to a stage iv breast cancer forum and read from women who really get how I feel.  Women who understand that there's a sweet spot to be found between other people saying, "Eh, aren't you done with cancer yet? Any one of us could die at any minute, you know," and "Oh my goodness, you're going to DIE!" Who get what it feels like to wonder if that ache, cough, or dizziness is just stuff or the sign of increasing cancer.  Who also deal with the conflict between wanting to prepare your family for a possibly very bad future and at the same time wanting to give them the gift of normalcy and not spend whatever time you have together filling it to the brim with worry.

Stage iv cancer boards are a good place to hear about other people's experiences. To see that other women with similar disease characteristics are on the same treatments, have similar side effects, and, thankfully, some have had success with those same treatments.

But, the problem is, the sword cuts both ways.

As often as I find hope that helps me in this still new cancer diagnosis from women who post about the months, years, even a decade or more that they've been living with stage iv, that's not the whole story. There are always other women who are are doing badly.  Women who need their cancer-eaten bones pinned or replaced.  Women who are in pain that isn't very well controlled, even with heavy duty painkillers that leave you loopy and feeling like a stranger to yourself. Women who are out of options except for hospice.  And, because hospice isn't for people who are getting better, there are always posts in honor of women who die.

Cancer is serious business, you know.

There are some times when I avoid sad posts. I know what cancer does and some days I don't want to hear it. It's not an honorable reaction, I know, but sometimes going there is a little more than I can deal with. I guess I'm trying to spare myself the same reaction I would give others by showing up at a lower-stage support group, I just don't want to be reminded of how this thing can go.

But there are also times, especially as I get more and more used to being stage iv, that I'm glad there are people who post when someone has become "an angel" and glad there are women who can share how sad it is that someone else has been lost to cancer, how sad it is when a woman we have gotten to know and shared experiences with has passed on.

When I was young, we went to a church that had lovely* stained glass windows of angels. At some point, my mother told me that the faces of those angels were the images of the real-life children of the donor who had died. It seems certain people in the 1970's found the idea vaguely sacrilegious. I don't know, I'm willing to let go of taking the gesture as too much of a doctrinal statement. To me, then and now, it seems like a lovely, poetic gesture. A touching way to cope with the impossible sadness of losing that many children and a way to use art to help give them the legacy those poor children weren't here long enough to earn for themselves. I guess I always was a little maudlin.

I don't know what those children died of.  I have a vague recollection that I might have been told it was measles, but I don't remember for sure. The church was built in the 19th century. There were a lot of things for children to die from back then.

Because dying young wasn't so uncommon back then, I suspect there were plenty of people around at the time who shared the understanding of what it was like to live through something devastating like the death of so many children, even without having internet forums to help them find each other.

I also suspect that to some parishioners, especially in the 1800's when the death of children was not uncommon, those windows served as both a momento mori and a "but for the grace of God go you."  It was a time where untimely death must have seemed a lot more random and a lot less avoidable than we typically think of it today. I wonder if it seemed like a good thing to be reminded of something so sad?  Was it an opportunity to cherish the time while they had it?  Or would they rather not have had their fears stoked with such a reminder each and every Sunday?

Today, we live in the age of "10 things" and "top tips" lists that seem to promise health and longevity. I think sometimes it catches us a little off guard that bad things can and do happen anyway.

Maybe that's a good thing. I can't quite decide if being reminded that untimely death can still be random and unavoidable is helpful or not. As much as I don't want to inflict myself on support groups or be reminded in the forum of how mean this disease can be, I still feel like it's important to understand the full range of what this is really about. And yet, the sword does cut both ways. You can't talk random and unavoidable death without bringing worry and sadness.

I suspect if more people understood the randomness, there would be more understanding of how to handle things like this. But I don't know if that would be a good thing or not. I'm pretty happy with untimely death being fairly uncommon in this time and place. And I'm obviously not at all eager to take it on myself just to be a helpful reminder for others. I'd much rather be a case study in defying cancer and living a long darn time, thank you very much.

But maybe more understanding that today is what we have, that now is the time to plant morning glories and half-double pink petunias, to laugh with my family and cherish all the sweet little moments of normal, isn't such a bad thing. Maybe we can strike a bargain, I'll tell you all to remember that people die and cancer is bad, you can all take it to heart and live in the moment, and I'll do the same thing for the next 30 to 40 years. Deal?

Now we just need to find a way around the random and unavoidable part.

*I've tried a number of times over the years to google up pictures of those windows, but so far no luck. Someday maybe I'll drive down to Rhode Island on a Sunday so I can have another look.  My memories are weak, but in them the windows are sublimely lovely.