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.