Where's a free dishwasher when you need one?

Want to hear a very weird but absolutely true story?

My dishwasher has been slowly dying for months (that's not, by the way, the weird part.  unpleasant, but not weird).  The dishwasher wasn't that old but the racks (top and bottom) had already rusted to ruin a couple of years ago.  We'd bought replacement racks, foolishly thinking that was a wise decision, and those, too, had rusted almost to ruin, yet again.  And the ruin didn't limit itself to just the racks, either--nope, other rust spots have been showing up on the washer itself.  About a week ago it flaked off the paint to show a nice quarter-sized spot of rusted through area and started leaking through said spot on the door. I caulked up that spot as a (literal) stopgap measure and we started looking at the options and prices of new dishwashers.

We'd hoped to have a little time left to get our ducks in order, but last Monday, it was pretty undeniable, our dishwasher was not only rusting apart, but also was now not even doing even a minimally acceptable job of cleaning--which, when you think about it, was the only job we were even asking the poor, rusting, limping appliance to do.  It was time to call it what it was: a kind of expensive and not particularly good looking drying rack for our newly remembered handwashing ways.

Handwashing isn't all bad. It gave me a chance to remember my youth.  And my grandmother who never owned a dishwasher.  And it was an interesting thought exercise but also a little sad to try and remember whether it was my grandmother or my home ec teacher who insisted that silverware and glasses should be washed before dishes and then pots (I never did figure out who it was, which, honestly, bothers me a lot because it's not like the two had equal impact on my life so how come I can't remember?).

But handwashing isn't fun.

But, here's the really weirdly cool part.  As I was leaving the office for lunch the next day, I saw it, this amazing miracle of a thing: in the foyer of the office building was a dishwasher just sitting there hanging out on a large sheet of cardboard with a sign that read:

FREE working dishwasher

As crazy as it sounds, I swear this really happened!

One of the downstairs offices had been renovating, which I knew because there were boxes in the lobby for a week, followed by cabinets parts sitting in the hallway, followed by more parts and a used office-like pieces.  But a dishwasher?  Our office doesn't have one and I honestly can't remember that I've ever worked in a place that did.  What are the odds, and less than 24 hours after we realized we couldn't use ours anymore?

So yeah, I put a nice addition to the note thanking them and telling them we'd pick it up that afternoon--didn't want to risk the awesome thing disappearing, especially not to a "guess no one wants it" dumpster.  It actually took a day while we arranged to borrow my brother- and sister-in-law's van (thanks, J and J!) since it wouldn't fit in a car (we tried) and last night, a mere 3 days after we started handwashing, I bought a new $12 drain hose and installed this thing (installation manuals and YouTube are wonderful things), and--get this!--ran a load of dishes.  Three days.

It's not new, probably about 5 years old, judging from the model number, but it works beautifully, and has neither rust nor leaks.  It's also the right size for the space and even the same white finish to match our fridge and oven.  Honestly, it's weirdly perfect.

Looks good, right?

 I just keep shaking my head.  I mean, what are the odds?  Just what we needed, perfect, free, and right there the very next day.  I've never seen a free working dishwasher hanging out in a hallway before, not in that office and not any other hallway that I can remember.  I know I have stage IV cancer and everything, but I still feel like I must be the luckiest person EVER.  What a crazy blessing. 

Do I believe in miracles?  Theoretically I'd say yes, but happening to me, if I'm honest, no, I didn't really believe miracles on that scale can happen in my own life.  It's like they're nice for other people, but this is me we're talking about here.  I generally feel more like a "make it happen" kind of gal than the "charmed life" type.*

But maybe I need to rethink that a little bit.

Does a free dishwasher mean anything at all about doing better than average with metastatic cancer?  Well, no, not really.

I know that.

But, on the other hand, which of us really knows what treatments will work for how long and what new therapies might come down the pike?  Who knows what the future holds?

I know my cancer odds aren't excellent.  My odds are actually pretty damn crappy.  But who knows? I could be one of the lucky ones who pull this thing out for a long while.  I mean, stranger things have happened.  Like this dishwasher, for example.



*Just to clarify, since my husband read this differently than I intended, so he's probably not alone, I don't mean my life isn't great, because it is and full of blessings--I'm just trying to say that we have to work for things, usually anyway, rather than just putting out our hands and watching them fill with diamonds.
-----------------------------------

(Also, I went for my monthly oncology appointment today, white blood cells are low but acceptable so no need to take extra time off of Xeloda, plus my liver numbers are back to normal again which is great--guess that's kind of par for the course this week!)

Live like you were living

"Live like you were dying," is one of those things.  It's supposed to be a freeing, YOLO inspiring, "go get um!" kind of rallying cry.

I get that.  It's not good to waste your time procrastinating.  It's not good to spend all your time doing only what you hate thinking "someday" you'll stop. 

The problem is, with all due respect to Tim McGraw, it's also kind of hard to plan all that skydiving, Rocky Mountain climbing, and 2.7 seconds on that bull named Fu Manchu when things are uncertain.

There's the obvious cancer uncertainty where you don't really know what the cancer's doing or when it's going to work around the current drugs.  But there's also the less obvious uncertainty, the one where you think life just might stay relatively normal for a long, long time.

It would be wonderful if that happened, if I was part of the small percentage who got years out of Xeloda.  Or at least enough time for something else to be discovered that worked well and made life more normal than unending IV chemo.

Actually, it would also be wonderful if I felt relatively good on IV chemo and stayed on it for a long, long time.

And it probably would still make me happy if I felt bad sometimes on IV chemo but still was able to stay on it for a long, long time.

But any of that would make it a terribly stupid idea to cash in everything and spend the next few months going crazy doing all those Tim McGraw sung things.  Because with nothing to live on but memories of being tossed off a bull, life would be kind of rough.

Pencil pushing gets a bad rap in our society, but let's face it, when pencil pushing puts food on the table and a roof over our heads, it has its uses. 
 
In my head I know the key is trying to walk that line between doing things in the moment and planning for the future.  If only that line was easier to see.

But I'm trying.

I'm planning a vacation this summer.  Flying with my daughter to a country we've dreamed of visiting, where she can practice the language and we can stroll around and see wonderous things.

I'm researching sites, looking at the budget (thanks, Mom and Dad), deciding how to pace the trip and what to see.  I'm also planning around my energy levels, my drug shipment schedule, my poor feet and hands which are fragile these days and, even with good care, hurt a few days every couple of weeks.  But it feels doable.  Doable and a heck of a lot of fun.

...

Next month we'll be at a road race and arts fair in memory of my stepdaughter's boyfriend's sister who was tragically killed in a car crash in her early 20's. 

Earlier this year, Holley Kitchen, the woman whose awesome metastatic breast cancer video became a viral sensation passed away as a result of her cancer at the age of 42.

Last week my mother-in-law's cousin died after a short illness.  She and my mother-in-law used to waitress together in the Catskills when they were teenagers, an age where just about everyone believes their lives stretch in front of them in an unending line of health, fun, and freedom. She's survived by her children, her 14 grandchildren and 1 great-grandchild--probably not at all what her teenaged self was thinking about back then, but part of what it really means to have had 70 additional years of living. 
...

What's the lesson in all this?  I have no idea.

Tomorrow's a gift? Life is fragile?  Life is for living?  Live like you were dying?  Live like you were living?

I don't know.  I'm really just trying to figure it out myself.
 
And, I'm looking forward to being there for a memorable vacation this summer. 

I hope that's the right balance.  Or at least the right balance for me, now.

Maybe about Ibrance, maybe not

Edgar Degas - L'Absinthe

Two weeks ago, I was on a dream vacation to Italy.  One week ago I came home and started my 2nd new drug, Ibrance, meant to work alongside the letrozole I started the day the new bone and liver mets were discovered.  I've been feeling sick ever since.

I can't really blame it in the Ibrance, at least not fully.  I was, after all, on airplanes, in new places, finishing a busy week with not much sleep.  My meals in Italy were delicious but not full of whole grains, fruits, and vegetables the way I try to make sure my normal meals are.  So, like millions of travelers, I caught a bad cold.

Strangely, with all the medical stuff I've had over the past several years, stuff including chronically low white blood cells, I don't get sick much. That's part of why this one has me shooting dirty looks in Ibrance's direction.

I also can't remember in recent times having a cold that lingered this long.  First a couple of days of sore throat and body aches, then add in a bad, tickley, barking cough, toss in a stuffy/runny nose for good measure, and make sure there's enough exhaustion so that the nights spent sleeping poorly with constant coughing and sniffling really hurt.  And keep up with it through what is now day 8.  Yuck.

To be fair to Ibrance, none of those are recognized side effects of Ibrance.  Plus, as of last Wednesday at least (at the time sore throat and body aches), my oncologist wasn't worried.  She pointed out that 3 days on Ibrance (at the time) wasn't really that long to be building up side effects.  So that's all good.

But, since you know me by now, you know I still worry.

I worry about the common side effects of Ibrance like lowered white blood cells and chronic upper respiratory infections.  Low platelets an poor blood clotting.  Anemia and fatigue. I worry that all of that sounds like an invitation to catch everything that may be going around.

I worry that those things, even if they're just starting to develop in me aren't helping me get over this cold.

I worry that this isn't just a bad cold based on bad luck but actually a sign of how my live is going to be on Ibrance.  Catching everything.  Taking too long to get better.

My oncologist is smart and careful, and in my head I know she's probably right, that this is just a cold and that's that.

And hey, last night, I only woke up once in the night, which is much better than the several nights before.  And yesterday, finally, for the first time in a while, I felt better than the day before instead of worse--both facts that help bolster my faith  in a non-Ibrance illness.  Or at least an illness that can run its course despite Ibrance.

But, with a cold that's unpleasant and lingering, it has me thinking back to my chemo in 2012.  That time was tough but bearable, mainly because I knew that in 16 weeks from the first dose I would be done.  That's the thing missing with stage 4 treatments, there isn't a checkered finish flag.  You start with one (hopefully the one with least potential side effects and most likelihood of good results) and keep on until the cancer gets worse.  Then  you pick another and do the same thing.  Over and over again until you run out of treatments.

Its a great system if your side effects are minimal and your success is long lasting.  It's an ok system as long as they meds are giving you good results.  But if the side effects are difficult and the drug is still effective, at some point you may have to deal with the fact that this is now just how your life is. And if the drugs aren't effective, well, you know that's not good.

Clearly, a lingering bad cold (or a series of lingering bad colds) is livable if the anti-cancer results are good.  And I have hope that Ibrance will generally go better than this first week has been, despite low blood counts that may or may not be in play and may or may not be keeping me sick longer.  At least for now, I feel like maybe I'm starting to get over my cold and coughing a little less.  Hopefully that's a good sign that it won't be like this for the duration.

I've always said, and always meant, that I'd do whatever I had to to be here for my husband and the kids for as long as I can.  But this cold serves as a reminder that so far in stage 4 I haven't had a whole lot of things that would put that to the test. I'm hoping my Ibrance experience won't be much of a challenge, either.  But this week of illness is a reminder to me that there are a lot of different things living with stage 4 can mean.

But right now, there are just too many unknowns about what this cold might mean, how Ibrance might go, how long I'm going to be feeling under the weather, and even how effective Ibrance may be for me.

So, here's hope for feeling better soon, a long and successful run on Ibrance, and no more illness.  And the hope that I'm just a traveler who caught a bad cold unaided and unabetted by any other factors and just need to get over it soon.

Where is my mind?

Bad news and stress always seems to leave me forgetful.  It's like my brain can only take so much before it's out of room.

When my grandfather died, I locked my keys in the car.  When I was first diagnosed with cancer, I drove all the way from the surgeon's office to work before I realized I'd left my purse on the chair at Dunkin Donuts.  So far with this most recent bad news I haven't done anything that dramatic, but I'm definitely finding myself realizing that I am not, at the moment, at the top of my game.

But still, without any real alternatives, the thing to do seems to be soldier on. And I'm sure my brain will catch up eventually.  It always has before, right (ok, maybe don't answer that)?

I don't feel bad physically.  Which makes sense, it's not like I'm any sicker than I was before Wednesday, it's just that I have some scary news.

So I go through moments of normalness and moments of terror and moments of worry and then back again.  I remember how this goes and I know it will get better.  And, God willing, Ibrance and Letrazole will do a good job and I'll get some good scans under my belt again.  That would go a long way toward helping me relax.

But for now I try fairly unsuccessfully to stop borrowing trouble.  And stop googling advanced liver failure.  And stop imagining I'll have every unpleasant side effect in my little Ibrance pamphlet.  Kate's helpful cancer hint: excessive "worst case" research is rarely helpful (see, now you know!).

And, besides, I'm not a rookie at this anymore.  The progression, drug regime failure, and liver mets are new, but I'm practically an old timer at having cancer now.  So I know if I can just ride out this "just found out" phase, I will get mentally better.

And you (yes, you), please be patient with me while I get through to that.

And maybe also let me know if you see my purse or keys in all the wrong places?

Moving on

Edward Hopper - Compartment C Car

I got some results from the bone scan I had last week and the CT and MRI earlier this week.  My brain still looks good, but my liver and bones are starting to show signs that the cancer is evolving its way around the Faslodex.  There are some new spots on my spine and some smallish areas on my previously unaffected liver.  It's not terrible, but it's not that great, either.

I also have more kidney stones.  Because today is my day, it seems.

So, at the recommendation of my oncologist, I'm moving on to a new drug combo and last month's Faslodex was my last Faslodex.

It was expected that this day would come, and I think I still did better than average, but I was hoping I'd get a longer run of it.

But, starting tonight, I'm on to Letrozole, an aromatase inhibitor.  I'll be combining that with Ibrance, the  new drug from Pfizer that was just approved by the FDA 2 months ago.  Timing is everything.

The Ibrance will take a few weeks to get (it has to come through the mail from a speciality pharmacy) and my oncologist wants me to wait until after I get back from the first away vacation I've taken in years later this month--it should be fine, but it seems a little ironic that I had 12 mostly uneventful months on Faslodex and the one week in 3 years that I plan to get on a plane for fun, and this happens.  As I said, timing is everything.

Letrozole's side effects should be similar to Faslodex.  Ibrance brings fatigue and low blood cell counts (red and white), so that may be a little more of a challenge.  Or maybe not.

The good news is, in the clinical trials, the Ibrance/Letrozole combo had a median progression free survival of 20 months, which compares to 10 months with Letrozole alone.  Those were women who had not already failed a different hormone drug like I did on Faslodex, so it may not be as good for me, but obviously median PFS is a guideline not a promise, anyway.

I guess I'm getting better at cancer these days.  I'm sad, but for now I'm feeling like it's ok.  It's time to roll up my sleeves again and move on to this next treatment.  And fortunately I'm not out of treatments yet.

And so I move on.  And hope this next new thing will be the next new thing.  And so it goes.

I Remember 2012

I tend to get pretty wistful about life before cancer.  It didn't seem especially carefree at the time, but in comparison I guess it was.  Back then, like most youngish adults in the first world, I expected to live pretty much forever and I took it for granted that I'd someday be an old lady bouncing grandchildren on my knee.  I may still get there, but if so, it's going to be through the wonders of science and a whole ton of things all lining up in just the right way.

Sometimes thinking about how things were back then (you know, waaaaaaaay back in 2012--but it sure does feel like a long time ago) makes me smile.  And sometimes it makes me cry. And a lot of the time I just kind of puzzle over everything that's happened between now and then and try and put it all together.

Yesterday, I pulled up the medical files I had requested last February when I was newly officially diagnosed as stage iv (at the time I had requested them for my second opinion appointment).  I wasn't planning on researching my whole breast cancer history at the time, I was really just looking for one specific fact.   But, it sure was a trip down the rabbit hole reading through all the scan reports, visit summaries, surgical reports, pathology reports, test reports, and so on dating from my clean mammogram in October 2011 to the April 2012 first cancer diagnosis to that diagnosis in February 2014.  Well, not really reading it all, more like skimming, reading, skimming again, actually--there are over 300 pages there, and they only pulled the things relating to breast cancer. It's a crazy big chunk of my life in there.

I saw things in the reports I don't think I knew before, although that may just be my pretty shoddy memory and a function of how much was going on all at once at those times.  It turns out I had a tumor marker test run in the summer of 2012 and it was only 9 points lower than my latest scores--of course, those 9 points make the difference between "elevated" and "normal range" but still, less than 10 points seems like it must be good, right?  I knew I had had a blood transfusion during my epic many hour surgery to remove and reconstruct, but if I knew my bloodtype at the time, I had since forgotten it (for the record, it's O+).  I'd also forgotten how many days I was in SICU (2 days) before they wheeled me in my bed around to the elevators and up to a regular floor, but I do remember how kind the nurses were and how the nurse who oversaw my transfer up to the regular floor told me the sunsets were just gorgeous from my new 6th floor room--she was absolutely right, too!

But a lot of the fascination for me was in seeing again how it all unfolded, remembering and being reminded of those early visits from the appointment summaries.  Starting with that first appointment where my gynecologic nurse practitioner felt the lumps I had discovered and ordered some tests, to the imaging, to the biopsy, to the various scans and planning appointment and procedures, assessments, treatments, and on and on and on.  

I know some people dislike the word "journey" applied to cancer, but reading through all that stuff, remembering how I started out not at all worried and things just kept moving farther and farther away from what I wanted, I'm thinking journey is about right.  Not a journey in the sense of "hero's journey" with a nice story arc of personal growth and increased ability and confidence.  More like the "what a long, strange trip it's been," kind of journey.

In many ways, I'm 100% still the same.  I'm in the same job, in the same house, loving the same family, cooking the same foods, holding the same faith, living the same life.  Even physically, I'm not that different.  There's cancer in my bones, sure, and scars on the outside, a million tiny surgical clips and other evidence on imaging scans, but it's not something most people can tell by looking at me or anything.  It's not a huge piece of my daily life that's different now, but it's a piece whose impact just keeps echoing back, forth, and all around into just about every corner of my formerly well-ordered life.  

I'm learning to live with the changes and I'm getting on with living a life and not being just cancer, but looking back at the woman who walked into the doctor's office in April 2012 and looking at the one who walked out of the doctor's office in January 2015 and will return again in February and March and April and May and on and on, thinking about everything that has happened between then, sometimes it just kind of floors me to look at how much everything has changed.

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! 

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.

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!

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.

An Update and Baby Steps

Van Gogh - First Steps, after Millet

I had appointments with both my Radiation Oncologist and my Medical Oncologist last week and another round of injections (Faslodex, Xgeva, Lupron).  I don't enjoy the shots, of course, but somehow it feels more comfortable to have recently seen doctors.  I'm still waiting a few more weeks for my  CT and bone scans to see if this Faslodex is doing anything, but it's nice to have doctors check me over and decide there's nothing noticeably bad that they can see.

Of course, as I used to hear a lot when we were discussing different treatment options when I was stage III, I'm very healthy except for the cancer (yep, all except for that).  It was a good thing at the time because the comment was part of the decision making for whether there were additional worries about me going through the surgeries (there weren't and I did well) and being prescribed a nice aggressive chemo plan (it was a go and I made it through), but it always sounded funny to me.

But last week, my Radiation Oncologist told me I didn't need any follow up appointments since my Medical Oncologist is watching me closely and my radiated hip is doing nicely.  It does feel much better and the rectangles of skin that were in the radiation field have gone from dark-and-reddish to less-dark-and-brownish, so that's all good.

My Medical Oncologist was also pleased.  There was no blood work this time and I forgot to ask about my numbers from last time, but if there was something really worrisome she would normally have discussed it.  Nothing seems to be growing in the areas she felt and my lungs and heart are, apparently, sounding as they should.  So it was a nice easy visit--long may those last!

The one thing she did say was that I should try and get more exercise.  She suggested I use a pedometer and try to get in 10,000 steps a day.

Now, as I've mentioned before, I'm pretty much the most goody-two-shoes of all possible goody-two-shoes patients, so when I went home I diligently dug out the free pedometer I'd gotten at that cancer walk we did last October (the one with the weirdly self-conscious-making survivor sash that I guess I was lucky to be able to get while I still felt like a survivor without restriction...) and the count was on.

That first afternoon after the appointment was not to the 10,000 standard.  Part of that was doubtless because my sister-in-law met me at the medical center and we sat for an hour or so in Starbucks eating buttery pastries and drinking syrup laden coffee (well, syrup laden coffee for me anyway, she ordered something else but the pastries were a nice joint effort, and well worth that effort, too).  Not many steps involved at Starbucks, but at least if laughter really is the best medicine we were golden.

But, back to that pedometer (although obviously not as much fun as Starbucks), the next day I wore it to work and home and noticed that my usual day get me about 6500 steps.  I discovered that it turns out the 10,000 step thing is kind of a head fake--sound like something you can just work into your day but, for me at least, it actually requires a bit more strategy and some concerted effort.  I really need to actually take a walk if I'm to have any hope of hitting that.

So each day since then, I've done that.  Intentionally strapped on my running shoes (which I'd bought last fall when I started running again so I guess I can still call them that, even though running with mets in both hips would probably be a spectacularly bad idea) and gone for a walk.  Sometimes with my husband, sometimes with my daughter, and once, while at the beach celebrating my brother's birthday at another sister-in-law's family beach house, for a little while by myself with beautiful ocean views and marsh grasses taller than I am.

I've been surprised at how hard it's been.  I'm finding spending that time with loved ones or just running through thoughts by myself is a treat, but even walking fairly short distances leaves me winded and muscle sore.

To mix things up a bit, I've started logging into my Sparkpeople.com account again and using their chair cardio videos (I may graduate to their low-impact cardio at some point, but for now I think no impact is probably best).  And, yep, 11 minutes of cardio while sitting down also leaves me winded.

Nice.

I've been so careful not to stress the hip mets for so long that it's now difficult to wave my arms and legs around for a few minutes while sitting in a chair.

I guess my oncologist totally pegged it, I need to get more exercise.  I mean I really need to get more exercise.  And by "more", it looks like a starting point of some exercise would totally fit the bill.

So I've been doing it. I've been taking steps and logging my "progress". I know it's a good idea and I'm not in a position to ignore my oncologist's suggestions (I could ignore them, of course, anybody can. But I don't. Because cancer. And also because, come on, it's just walking for goodness sake).  So each day I've been doing that and with the added walks I've been hitting that 10,000 mark.

I spoke to another of my sisters-in-law yesterday (I have 6 of them, and all of them are the kind of people you're glad to be family with, so if it sounds like my world is chock full of sisters-in-law, that's because it is), who had gone from being a complete and total non-runner to training for (and completing) a half-marathon.  She's pretty inspirational and one of the things she told me was, basically, "Look at everything you've already gone through, you can do this, and it will get easier!"

It isn't very flattering to get winded taking a walk, but I'm glad I can (pre-radiation it hurt like heck) and I know my sister-in-law is right, with consistency, my system will adjust and it will get better. I'm proud of and impressed by the people I know who run, and I look back fondly on my own time as a cross-country runner (in college, a couple of decades ago), but for me, for now, I need to look at my walking, my seated cardio, and my growing string of 10,000 step days and also be proud.  Because you have to start somewhere, and it is a start.

Not a fortune teller

John Singer Sargent - El Jaleo

I have about a month until I get my first set of post-stage IV scans to see how things are going with my cancer and my treatments.  It will be the first real indication I have about how the Faslodex, with some assistance from the Lupron and Xgeva, is doing against my cancer.

In the meantime, of course, I'm continually focusing on every little thing to try and read it like tea leaves or the lines on my palm, looking for signs.  Wish I knew which one was the life line.

I do this even though I know looking for signs is completely useless.

My bones sometimes ache and my back or neck hurts.  It's a side effect of treatment, also not an uncommon thing for someone who's 44 not 24, but, at times I also worry that it's a sign that the cancer is spreading to more bones.  I try to remember which rib it was with mets.  I think about the neckbone that has cancer and wonder if it could be that.  Does Faslodex cause tumor flares before it gets to work?  What kind of timeframe would that be if it did?

I had a new cough about a week ago.  I sat there at work listening carefully and feeling better when I heard coworkers cough, too, because they aren't likely to have their nonexistent mets spread to their lungs, so maybe it's just a bug that's going through the office.  Or allergies.  Or part of the sore throat potential side-effect from one of my meds.  They say if it's cancer it will only get worse, not better.  It took a few days, but my cough is getting better.  Thank goodness.

The first two weeks after my first Xgeva shot I had vertigo most times when I shut my eyes.  Turns out it was a side effect of Xgeva that eventually went away.  But how cruel is that for a cancer medication to mimic a symptom of brain mets?

When I first was diagnosed with metastatic cancer, it was a strange relief not to have to wonder if every little thing was a sign that the cancer was back because, well, the cancer was back.

Turns out that relief was short lived. 

My mother sent me an article about a woman who is defying the odds and in her 3rd or 4th decade since being diagnosed with breast cancer mets.  I, unfortunately, recently read a different article written by the widower of a woman who lived only 8 months after her BC mets were discovered.  

I can't seem to help looking at these kinds of things trying very hard to see something in them that will tell me what my own future holds.  Some sort of similarity in the story I want to be, some kind of crucial difference in the story I wish I could forget about.  But you can't see what isn't there.  If the stories tell us anything, it's more about the crazy unpredictable nature of this disease.

And so, I try as best I can to remember that there will be plenty of time to worry about the bad stuff if bad stuff happens.  I tell myself that I'm getting the best medical care possible.  I remember that I'm doing all I can and I try very hard to let go and let God.

I wonder if it gets easier with time?  If my scans come back good, and the next set, and the set after that, will I start to be able to relax?  I have no idea, but I sincerely hope to be in a position to find out.

Like maybe in my 3rd or 4th decade from now, I'll update this post and let you know whether I'm still worrying.

In the meantime, I'll should probably try to stay away from runes and Magic 8 Balls. 

Morning Glories

One of the morning glory photos
my daughter took for me in 2012

Yesterday I started some morning glory seeds inside so they could get a jump on growing during this unseasonably cold spring we're having.  It's too damp and cold to plant them out and I don't want to wait too long or they won't bloom till September.

I've grown morning glories each summer for the last dozen years or so.  They were in pots on my balcony when we lived in an apartment and now grow on the rustic trellises my daughter and I MacGyvered out of sticks one year and leaned against the side of the shed.

Morning glories are easy to grow and I love the old fashioned beauty of them.  Plus, the worse you treat them they more they bloom, which is pretty nice for those of us who find ours our dedication to garden care sometimes waxing and waining as the summer progresses.

For 11 of the past 12 years, I grew my morning glories from seeds, usually saved from the year before and planted out when the weather was warm enough.  The only exception was 2012, the year I was first diagnosed with cancer.

That year, instead of growing them from seeds, I ended up buying a little flat of overgrown morning glories from a local garden center and stuck them into the ground between diagnosis and surgery.  As I recall, that year I had tried a few times to put some seeds in the ground between worry and uncertainty, but with so much rain and cool weather the seeds kept rotting in the dirt before they could take root.  With surgery looming and no morning glories in sight, I ran out of time and took what I could find so I could just have something--anything--that looked familiar growing outside my window that year.

I was so glad for that little flat of morning glories when I was recovering from surgery through June and July and dealing with chemo from July through October (well, no morning glories after the hard frosts in October, but you get the idea).  A lot of that time is a blur for me, but I remember distinctly asking my daughter to go out and take some pictures of the blooming flowers so I could look at them close up without having to go out there myself (I have to think that was after surgery because I was working part-time during chemo and, while not in fighting form, I should have been able to make it far enough to look without too much trouble.  But, as I said, details from that summer are a little hazy now).

Most years my flower garden is something I enjoy plotting out in the winter, starting from seed indoors in early spring, and planting out with care when May comes around.  I'm no expert by a long shot and things don't always work out, but I get a kick out of working on it and it makes my happy.  I even used to blog about my gardening trials and errors in those days before cancer (with actual readers, too--who knew other people would want to watch my seedlings grow?).  In 2012, by contrast, my flower garden consisted of the morning glories, some scattered marigold seeds, the 2 perennials I had planted in years past and the 3 random perennials that I grabbed from a plant sale right before surgery and shoved into the ground at the last minute so the dirt would have something in it besides weeds.

My mantra during 2012, with all the aggressive treatment aiming for a cure, was "next year."  Everything that was left undone, everything that was unpleasant, everything that made me sad, everything I wanted to do but wasn't up to doing that year was made a little better by remembering I could do it "next year."

Now it's two years later, and this year we're again dealing with a cool, damp spring.  I'm being good and babying my hip, but this year I'm not willing to wait until "next year," not if I can help it.

So now I have seedlings growing on my window sill, some purchased lobelia and dusty miller in the ground, and some bachelor button seeds scattered over soil in just the spot where I've planned them to be.  Those morning glory seeds are on my dining table, swelling up and getting ready to push up leaves and send down roots so they'll be ready to plant when the weather's right.  I'm not willing to put it off for "next year" when I have the chance to make it work now.

Pieces of my garden this year

I've become a bit obsessive about making this garden, this year, as lovely as I can.  I'm picturing a summer with days off spent sitting, reading, and drinking lemonade in the garden.  I want a place where I will spend some time smelling the evening fragrance of nicotiana and moonflower while dining with my loved ones on food from the grill and then toasting marshmallows while watching for fireflies and looking at the stars.

Goodness knows I'm no Martha Stewart, and I know full well there will be some (many) unexpected kinks preventing this from being a summer of utter and complete perfection.  I can live with that, but I just don't want it to be because I didn't try.  Not this year.

I  know not a single one of us really know what the future holds.  None of us know what the next year will bring, assuming we are even here when comes.  And I have to think sometimes that's a mercy.

But recent events, obviously, have helped give that abstract knowledge a hefty new reality.

So this year there will be morning glories.  There will be the deep purple nicotiana I love so much and the "broken plate" 4 o'clocks I've been meaning to grow.  There will be zinnias on the sunny side like my grandma used to love, but mine will be both solid and candy striped, because I think they look so pretty that way.  There will be the pot of pretty pink half-double petunia plants I started last month from the seeds I ordered last year but never bothered to plant.  In 2013 I thought it was no big deal, I'd plant those crazy petunias "next year."  Now it seems foolish to wait.

I know there may be dozens of "next years" given to me, and hopefully many "next years" where I feel great and put in every favorite flower I've ever had and some new favorites yet to be discovered.  But those years to come aren't certain.  What I do know is that this year is going to be beautiful because God has granted me enough health now to feel good enough to make it so, and I'm not willing to put it off to an uncertain future when I have the health to make it happen today.