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!)

My life as a spoiled toddler

The amazing Barbara McClintock's "Fairy Bread"
from A Child's Garden of Verses

It's been a while, hasn't it? 

I'm happy to say it's not because I'm doing terribly. I'd like to say it's because of I've just been too busy being fabulous to take the time to post, but that's not really it either.  Mostly, I've haven't been blogging because I've been mentally acting like a spoiled toddler going all, "I can't hear you, I can't hear you, I can't hear you!" to my cancer.  For a long while there, I just didn't want to deal with dealing with it.

Real mature of me, right?

It started in May.  I had my usual appointment and got my tumor marker numbers.  I'd been really, really hoping they would be continue their downward path right on down into "normal" range, finally.

They weren't.

They weren't bad, less than 1 point up, from 47.5 to 48.3, so stable, and I know I was damn lucky to have that, but, like a spoiled toddler, it really ticked me off not to get my way.

In June, they were a little lower, 45.1, so again essentially stable with a twist of "lower" but my white blood cells were just on the edge of "trouble" and I still wasn't into the normal range, so my funk continued.

It's kind of weird, I know, especially looking at where the number were.  I should be dancing in the streets to remain decently stable.  I think, really, it's just that I've been fighting this stupid thing non-stop for years, now, and I just wanted a break.  I really wanted Xeloda to shove me right smack dab into "no evidence of disease" territory and let me stop worrying for a little while.

And, yes, I know "stop worrying" wouldn't really happen because cancer is never going away even if it's not detectable and every single day is an opportunity for the cancer to outsmart the current drug and come storming back, etc, etc.  But the dream was so strong.  And so beautifully tempting.

It's hard, sometimes, to know I'll never get that.

And so, here we are today.  Another oncology visit last Thursday, waiting for more tumor markers to see how things are.  They may even be lower, they hopefully will be stable, and no matter what they are, it's been a good month and I feel good, so there's always that.  But still, the uncertainty.

Added to the uncertainty, my neutrophils (you'll remember those suckers are the white blood cells that fight infection and my inability to keep enough of them while on Ibrance last year is what tanked that drug for me), which had been trending down slowly but surely over the past many months, are now officially below 1.00 so I'm ordered off of Xeloda for an extra week to give them a chance to regroup.  No one really knows if the week off will make any difference in the cancer fighting.  I guess it doesn't even matter since the risk of infection is such that there isn't really any choice but to take a break, but still.

Yet, in the meantime, life has been pretty normal.  I get tired, I get painful feet and hands, I have trouble sleeping sometimes, but I also go to work, spend time with my family, grow my summer garden, and I just got back from a dream vacation with my daughter in Spain (so that was awesome!).

It's hard to live with the uncertainty, never knowing what's going to happen from one month to the next.  I would like nothing better than to "get through this" or "lick this thing," and some days it's all I can do to stay in the moment and not let fear creep into my enjoyment of the day (although, I'll admit, Spain was pretty distracting and so many great moments to enjoy).

I tell myself to trust God, I tell myself to be not afraid.  But sometimes it gets the better of me anyway.  And sometimes I'm just tired plain tired of dealing with it.

But I think, for now, I'm mostly over being a spoiled toddler. And I'm definitely going to try and be a better blogger.

Thank you for having some patience with me while I go through the ups and downs.  More news on tumor markers hopefully coming soon.

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.

And away we go...

James and the Giant Peach cover by
Nancy Ekholm Burkert. I love these
illustrations.

When I was in 3rd grade, my teacher read James and the Giant Peach out loud to our class.  As I recall, it was an exciting beginning and a great adventure for most of the book. But I don't remember how it ended. In my memory, there was something about the peach rotting and things going badly and a desperate crash landing and James' animal friends going away forever and James ending up alone.  In my mind, it was not a happy ending at all.  In my memory, it was a sad and brutal finish to a story that had started out so full of joyous promise.

But today, looking at Wikipedia's entry for the book, trying to remind myself exactly what happened in the ending, the Wikipedia summary describes a story that ends happily, not at all sad and lonely the way I remember it.  Now I don't know what to think.

When I was in 3rd grade, life was a different kind of stressful, unpredictable, out of control, and too often lonely and sad.  It's entirely possible that what was a whimsical funny ending for many 8 year olds just hit all the wrong chords for me at the time.  Maybe what was supposed to be a fun and goofy ending just didn't work that way for me and the life I was living at the time. It's entirely possible.

I never re-read that book, never wanted to. I've read 100's of my old favorite books to my daughter and some to my step-kids, too, and I've delighted in the stories we've shared.  But James was purposely not one of them. I never wanted to revisit James and the Giant Peach and the terribly disappointing ending.  But maybe I should have or still should, at least so I could see if the ending is good or bad.  Maybe with experience I'd finally be able to see why someone I remember fondly as a very kind and caring 3rd grade teacher would think it was a great book to read to her class.  Because in my memory, I still don't understand the choice.

....

Do you want to know something surprising? My Xeloda didn't take 3 weeks to arrive.  It actually took 3 days (well, 3 business days, anyway) to show up on my doorstep.  After all the trouble with previous drugs, how's that for a surprise?

Maybe Xeloda has less paperwork and insurance approvals, or maybe it's just that with the Ibrance and Afinitor approvals, any questions for Xeloda were already answered in the system?  Whatever happened, it was pretty nice to have the pills so fast and without a single phone call to see what the heck was going on.

I got them so fast, in fact, that I actually had to message my oncologist and see if I needed to wait the 2 weeks it was expected to take after stopping the Afinitor and Aromasin or if I should start it sooner since I had the drug.  She told me a week would be plenty, so I took my first 3 pills last night.

I'll be taking 6 pills a day--3 in the morning and 3 in the evening--for the next week, followed by 7 days off.  Why didn't I start it yesterday morning to make a full first day like a normal person would?

Oh, come now, if you've read more than a couple of my posts, you know me and my story enough to already know the answer to that one! The reason is because I had taken my Aromasin in the morning before seeing my oncologist/nurse practitioner in the day so it wouldn't have been a full 7 days off of the prior drugs if I took it in the morning.

So, again, only if you're new here, your next question is probably, "Do you really think those extra few hours make any difference at all?  Really?!?"

Well, no, not really, but still it seemed like the thing to do, and when I'm anxious or afraid I find keeping things as predictable and well controlled as possible is sort of comforting.  There's so much with cancer that I have absolutely no control over whatsoever, I try to take advantage of the things I do.

So there you have it, and as of this morning, I'm 2 doses and 6 pills into my new stint on Xeloda.

It's really too early to tell how the side effects are going, much less whether it's going to do a good job reducing the tumors.  I felt a little nauseous this morning, but better after breakfast.  Also, my hands and feet felt kind of ichy/tingly yesterday evening and I didn't sleep well.  Does any of that mean anything after only just barely starting the pills?  Probably not.  I expect what it really means is that I have Xeloda on my mind and am hyper-aware of (read: madly, obsessively focused on) every little thing that could possibly ever be related to it in any universe, known or unknown.  Hopefully I'll be more relaxed about it in time.

I've read blogs and posts from a number of people who have had really great rides on Xeloda.  I've also read about people who didn't have so much success on it, but for now, because there's not much to be done about it anyway, I'm trying really hard to focus on success stories and the good potential this has for me with relatively few side effects as far as chemos go.

....

As far as entertainment goes, on the other hand, whenever I read fiction books these days or pick out movies to watch, I always cheat and find out the endings before I begin.

You might think it's James and the Giant Peach related madness, a crazy obsession focused on avoiding the same kind of disappointment, but I can't really blame it on that.  In my teen and young adult years, I used to love tearjerkers and loved all kinds of books with deep, sad, bittersweet endings.  For many, many years my favorite book ever was The Unbearable Lightness of Being, I loved the story, I loved the philosophy, I felt deeply for the characters and the tragedy of the situation, and I found the sad ending of inevitable destruction so beautifully perfect given the poetically tragic set-up that brought our characters to that final resolution.

But these days, after cancer, I can't stand to spend my time on sadness like that.

If I do ever re-read James and the Giant Peach and find out for sure if it's a crazy fun ride that leads to a whimsical, joy-filled resolution, or a crazy fun ride that leads to inevitable sadness, loneliness, and loss, I know myself well enough to know that it will be a re-reading that begins last-chapter-first and will not go any further if I don't like how that first look at the last chapter goes.

I know that sounds crazy, I understand it's a little nuts. But, I'm ok with that.

These days, I just can't take spending my time getting to know a story, getting to know and love characters, just to watch them end in sadness and despair.  Even beautifully tragic sadness and despair, I'm just not interested.

Really, in these post-cancer days, I can't even take spending my time getting into a story not knowing the ending and just having to worry that it will all end up in tragic sadness and despair.  Even if the ending turns out to be happy after all, I'm just not willing to put that kind of stress on myself.  If I'm going to put my heart and soul into a story for fun, I need to know it will come out well before I even start or I'm not willing to put my time into it.

Yep, I'm sure that makes me certifiable.  And I don't care.

But I do find it kind of ironic, as I sit here in real life typing this, less than 24 hours after starting yet another new cancer drug.

The upside of insurance issues

Van Gough - Portrait of Dr. Gachet
(who, I'll grant you, was not a medical
doctor, but I think it still works)

I know that over the past week, this blog has turned into insurance gripe central, you one stop shopping place for all things problematic with insurance and specialty pharmacies.

It's been heavy on my mind over the last week and a half.  But now that my new Ibrance pill case is filled up and I'm 2 days into smashing back my CDK 4/6 action with Ibrance, I feel like it's important for me to acknowledge the upside of having these problems.

I live in one of the few countries where Ibrance is currently available and I have insurance to pay for it.

And that's a huge bright side.

At least as of last April, the Ibrance list price was around $11,000.  Per month.  Approximately $523 per pill for the 21 day course. Or $392 per day for the 28 day cycle.  And that's not even including the unused 125mg and 100mg pills I had to stop taking and not restart when my neutrophils tanked.

But I have insurance to cover it.  And even with the 20% copay from my prescription coverage, because I have commercial insurance I have access to Pfizer's copay assistance card which knocks that down to $10 a month for most of the year.

And even at $11,000 per cycle, this regime is not significantly more expensive than the Faslodex I was on.  And it's not more expensive than chemo or radiation therapy.  All of which were also covered by my insurance.

I doubt its more expensive than whatever I'll be on next, which should also be easily covered by my insurance.

Cancer is expensive.  I'm really, really (really!) lucky to have good insurance that pays for most of the scans, pills, injected drugs, doctor's visits, nursing care, lab work, and lymphedema compression garments that I burn through on a regular basis.

Good insurance with a low out-of-pocket yearly max and low deductibles.

And I'm even luckier that this insurance is through my husband's work and not mine, since I'm the one with the cancer.


I read about the Affordable Care Act/Obamacare, Medicare and Medicaid, insurance exchanges, Social Security disability, and all that related mess of things.  I try to understand it, but honestly? I usually get overwhelmed and give up.  And I'm not a stupid person.  It's complicated stuff and I have the great good fortune of not needing to understand it right now.

I wish I had the answers.  I wish I could use this platform to clear everything up and we could all go off dancing in sunshine and roses. I don't have that.

And I think it's important to at least acknowledge that I do know and I do understand that for all the grousing I've been doing lately about insurance an pharmacies, at least I have them to grouse about.  I'm grateful for that.  And I know there are lots of people who only wish they had such problems.

(Also, I promise, I'm going to try and write about something that isn't a downer next time. Things around here are really quite good, honest!)

Lighthouses, numbers, and upcoming scans

See all those inlets around Brunswick?
Wish I'd know what they meant to
the ocean *before* I got there!

It's been a while since I've posted anything.  Sorry for those who have been worrying.  Somehow as an adult, summer seems to have completely lost that "long days to do anything" quality it had when I was a kid.  It just seems like there's so much that needs doing in every direction!  Part of it's cancer (appointments every couple of weeks to check my blood counts as the regular protocol on Ibrance, or every single week to see if they're back up into "low but safer" range yet, walking every day) but a large part of it is just life with a job and a home and a family and a lot going on.  Just like everybody else!

It's not that I don't have time to post a quick update, of course, and I'm sorry I haven't.  Mentally, things feel very overwhelming these days.  Again, cancer and life.

I'm back on the Ibrance now, so that's good news.  Finally, on July 23rd my neutrophils went up to a whopping 1080.  You'll notice 1080 is higher than 1000 which meant I was cleared to start on the 75mg of Ibrance.

I went back to the hospital at the end of last week to see if my neutrophils were still ok after almost 2 weeks of the new, lower dose of Ibrance.  I honestly wasn't expecting good news because, come on, 80 points above the cut line isn't a lot of wiggle room!  But, much to my surprise, my neutrophils had actually gone up to a crazy 1400--still really low for normal people, but awesome in context! I guess there must be some lag time between cause and effect with the neutrophils, but I'm hoping it means we may have finally gotten to the sweet-spot between the two.

Actually, I really, really hope so because this current 75mg dose is the lowest one there is, so if I flunk out of this one, I'll have flunked out of the entire Ibrance regime.  I don't really want to burn through another one too fast!

Which, of course, brings up the only question that really matters here: it's all well and good that my neutrophils are doing better, but how's the cancer?

And for that, I have no idea.  My tumor markers were up a little bit in late July, but not as high as they were in June, so who knows if it's a trend or just normal variation?  I've been taking Ibrance since the end of April now, so almost 4 months, but I've successfully completed exactly one 28-day cycle, and I don't know what all that extra time off might mean. Luckily, I'm in the last week of pills for this current cycle, so that'll be two full cycles--go me!  I'd actually forgotten about the exhaustion and irritated throat/stomach/nose that come with many days in a row of this stuff, but after all the on and off with this drug, how can I complain?

At least this week I'll finally have some more answers--that CT scan we'd scheduled at my last appointment is finally coming right up, and that should tell us a lot more.

------

Almost a month ago already, my husband, daughter, and I took a nice weekend in Freeport, Maine.  I take a lot of my PTO for medical stuff, so a little Saturday-Sunday vacation away was just the ticket.

Maine was lovely, the weather was lovely, and strolling around Freeport made for a very relaxing time.

On Sunday morning, after we'd had Lobster Brunch (nice!) at the inn and checked out, we thought we'd go enjoy a little time on one of those beautiful beaches I thought Maine was known for.  Although many of my friends growing up went to Maine all the time and I'd heard about the beautiful beaches (Old Orchard! Oguncuit! Scarborough!), this Massachusetts girl has only been to Maine once, and that was for a wedding not swimming.  But I figured it's the same ocean we've been to here a 1000 times, what could go wrong?

Well, turns out, a lot could go wrong!  We went to a private campground/park nearby on the ocean, paid our per-person entrance fee, parked the car, grabbed our beach bag and walked to the water edge only to find our "beautiful Maine seacoast" was actually a mass of clay sludge and shallow, dirty water with sharp shells and seaweed everywhere.  We actually walked all the way around the point looking for the ocean we knew and loved (we are such rubes!).  We never found it.

I know, I know, should have done some research first!  I guess it never occurred to me that the Atlantic Ocean could be so different a few 100 miles up the coast. 

Part of life is knowing when to say when, and this one was an easy call.  We stopped just long enough to unsuccessfully try and wash off the sticky clay from our feet at the spigot before hopping back into the car and hightailing it back to the highway and heading home.

It was disappointment, for sure.

But a funny thing happened on the way to Massachusetts.  We'd been talking about how disappointing it was and my husband, who was driving, was secretly thinking about maybe trying one of the other beaches to maybe redeem the day a bit.  It might not be great, either, but it could hardly be worse.  As we were plugging down I-95 along with hundreds of other people at the end of a summer weekend, we came around a curve to a pile of breaklights just at the exit marked "York Beach".  Wait there with the rest of the traffic or take the exit?  That's an easy call!

So we went to York Beach and it was stunningly beautiful.  Miles and miles of clear sand and blue water rolling up wave after wave after wave.  There was even a lighthouse in the distance where the land and water met.  We had a wonderful time.

And a funny thing about that lighthouse, too.  I've had radiation therapy 2 courses now, both times in the same planning room and the same treatment room.  They have pretty pictures on the wall and over the ceiling light panel.  Gives the patient something to look at while you're lying there day after day.  I bet you can guess what those pictures were of, can't you?  Yeah, it was that lighthouse, the one that was sitting there waiting for us at York Beach.

I'd know it anywhere.

I took this pic because I was there!

I'd had 50+ different occasions to study that house, that light, the little fenced yard, the little red shed.  It felt comforting to see it again.

Is it just a coincidence that we accidentally discovered the same lighthouse that figured prominently in my cancer treatments? Maybe. You could certainly make that argument.  But I don't know, I like to think of it more like Noah's olive branch, like a little symbol of encouragement during a difficult time.

Maybe it is just one of those things that happens.  But to me, finding it there like that seems like a good sign.  Not sure what kinds of ups and downs are in store or what "good" ultimately means here, but cancer is a rollercoaster and Ibrance is, too, and I think I'll just take whatever good I can get my hands on--to me, this is just the one I needed, and right when I needed it, too.

The most wonderful time of the year

Today is the first day of the 2015 Annual Meeting of the American Society of Clinical Oncology.

It's a time when all kinds of cancer researchers, cancer drug companies, and cancer healthcare professionals present papers and reports on their research and clinical trials, and already some releases are hitting the mainstream news.

There are other meetings throughout the year that have similar presentations--the results of the PALOMA-2 trial were released at last year's American Association of Cancer Research meeting, which resulted in early FDA approval of palbociclib/Ibrance, which resulted in me being able to take it now--but advance press on this one has been really promising.

And results on PALOMA-3 with news on whether Ibrance is helpful in Overall Survival (how long people live) in addition to Progression Free Survival (how long till the cancer evolves around it and grows again) are expected to be presented.  Obviously I'm very interested in news about that one!

A lot of the research they will announce is still years away from being usable as cancer therapy, but it's progress and a sign that there are new things coming.  And, hopefully, there will be something good coming to take the place once my cancer evolves around Ibrance.  Maybe even something more permanant.

My brother sent me a link to one article based on brand new research with the subject: "Hold the line!  Help is on the way!"

I love that!  That's the plan, that's the goal, hold the line long enough for the next army to arrive.  

And this weekend, we should get a first look at some of the armies making their way to my battlefield.  And God willing, there will be at least a few butt-kicking regiments all geared up and getting ready jump on in and save the day.

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?

My Aunt

Melozzo de Forli - from the Sacristy of St. Mark,
Basilica of Santa Casa, Loreto

Two weeks ago, my aunt died of ovarian cancer.  She was a lovely, lovely person and she died before her time.  I have no doubt that many people will miss her and the strength and grace she brought with her as she made her way about this world.
  
Her sister told me my Aunt mentioned me in her last days, I was touched when she told me and still now which it's making me tear up to think of i--she was that kind of a person and I think that shows a lot about how she lived her life, she was struggling and ill and she was still looking outward.

It's one of those strange ironies that funerals are often mixed with reunions, and loss gets mixed in with the joy of being together again, and this one was no exception.  It was sad that my Aunt wasn't there, it felt wrong.  Yet at the same time I had the joy of seeing wonderful family members I hadn't seen in a while and meet others I'd never met. Two of my cousins have babies now, and watching them play--both little boys are around 1 year old and cute as can be--seemed especially important at a time like that. We've never lived very close by, but I remember my Aunt teaching my own daughter a song with arm motions at that age, I remember her teaching me to say "cookie" in Spanish when I was only a little older, myself, and watching these beautiful little boys of her family, one her own grandson, exploring the world around them felt like a fitting tribute.

I also had the pleasure of meeting the in-laws of one of my cousins, one of the daughters of my Aunt who passed away.  Her in-laws are very special people who have been helping out when they could during my Aunt's rough last 6 months, cooking and coordinating and just generally taking care of things where possible without the slightest bit of "look what we're doing!" or "what about us?"  They're like my own in-laws that way, so I can confidently say that people like that are truly a blessing.

I was thinking about them during my walk today.  How easy it is for people to get caught up in feeling like you need to make a grand gesture.  And how easy it is to get caught up in trying to be careful not to say or do the wrong thing.  And how both of those can make you so paralyzed by the weight of them that you end up doing nothing.  I know this because I struggle with both tendencies.

But the truth is, most of the time it isn't the grand gestures or the perfectly done things that matter, it's being there and giving of yourself and trying.  The fact that these in-laws were great cooks and delightful to be around was beside the point.  It was the pure, simple beauty of people doing what they could do to help and comfort in the middle of an unchangeable and difficult situation.

And I'll tell you, I've had people who helped me through some of my difficult times with my own cancer and an unsolicited meal brought over with love, or an offer for a ride "anytime" that really meant anytime, or a card saying "we're thinking of you" meant everything.  And that had nothing at all to do with whether the meal was delicious or how nice the car was or how eloquently phrased  were the words on a card. It had everything to do with making that connection and saying, or showing, that you care.

People say, "It's the thought that counts" and in matters of feelings and caring, I believe it's true.  Maybe not always true--I'm sure there are some people out there who are looking for stuff or looking to be haters--but when it matters I believe it's completely true.  You can bank on that.

I wish it were true for the physical world.  My Aunt was a person of grace and class and kindness.  She was someone who took care of herself, exercised, saw doctors when needed.  She had a loving family who will miss her terribly and a grandson not quite 1 year old who she won't be able to see grow up.  She deserved things to be different.  If intentions were what counted in the physical world, if being needed was what killed cancer cells and doing all the right things was enough to always bring good health, her family and friends would not have been at her funeral last weekend.

I think most of us know that in healthcare, having a good excuse isn't the same as doing the right things, but it's hard to wrap your head around the fact that even doing the right things doesn't always mean the right outcomes.

My Aunt had a hard time of it over the last several months and in some ways, her sister and immediate family say, that made it easier to say good-bye when the time came.  Knowing that she was now in peace and no longer in pain was a blessing, despite how much they would have liked it to have come about in a better way.  She was also a woman of strong faith, and it's easy to see her watching over her loved ones now from above, like people say, a special guardian angel.

I wish I had eloquent words, special powers, or a better ability to say here what she deserves to have said.  My Uncle did a wonderful job on her eulogy, his eloquent words were beautiful and fitting for the beautiful woman she was.

I wish I could return the favor for the example she set in how she lived her life.  I don't have grand gestures or perfection to offer.  So what I hope is that everyone reading this will understand what I'm trying to say, and maybe take a minute to say prayers, or think warm thoughts, or whatever you have to offer to her husband, her daughters, and the memory of a lovely woman who lived life with courage and grace.  

2015

My older brother and me, 1976 style

When I was a kid, I remember very clearly sitting with my older brother playing with our Mickey and Minnie Mouse bicentennial spark-making toys--"friction sparklers," the kind of toys we played with in the 70's, probably while smoking our candy cigarettes and rolling around unbuckled in the back of someone's station wagon, because apparently child safety hadn't been invented yet back then--and talking about how old we'd be in the year 2000.

As a 6 year old, being 30, which I was in 1999, seemed impossibly old.  Old in the way that was unimaginable back then and did not truly even feel attainable.  Me, 30?  And here I am already 45.

And thinking on it, our 2000 lives really were unimaginable to us the way we lived in 1976.  Microwaves were new and amazing, as were 4 function calculators.  Color TVs were rare and there was no such thing as TV remotes or VCRs, much less DVDs or Blueray. Computers, video games, digital cameras, cell phones, the internet were all strictly sci-fi creations.  There was really no way we could have made that mental leap from 1976 to 2000 without so very many things that happened in the intervening years, all the different steps that brought us from one time to the other.

And now we're in 2015.

I started writing this post thinking about everything that's happened in 2014.  I didn't know I was stage iv this time last year, so in addition to all the things that have happened outside of medical issues, there have been some crazy big medical things to wrap my head around in the past year.  I feel victorious sitting here in 2015, I struggle with doubts, but I know I'm very lucky right now.  There were times in 2014 when I was worried about it, whether I'd be here, what shape I'd be in if I was. But I am here, and I feel really good.

But the thing that's come to me as I write this, thinking of me in 1976 thinking about 2000 and how we had no idea at all about all the crazy innovations that, for better or worse, have changed our lives so profoundly.

I have no reason to believe that the same won't be true in the coming years when we look back at 2015.

There have been a lot of promising things going on in cancer research.  Palbociclib is almost to the market and I recently heard about another new drug called Pictilisib that's showing interesting results in cancers like mine. At a stage iv conference I attended last October I heard about all kinds of other pathways that researchers are trying to disrupt to stop cancer from growing.  A lot of these things won't work out, of course, but I hope some will.

While I was a busy 6 year old in 1976, playing with choking hazards and  setting off sparks around flammables with bicentennial Mickey and Minnie, all the drugs I've taken since 2012, the treatment regimes and knowledge, the ways to manage side effects, none of this was even close to reality back then.

And now people keep saying we're right on the edge of a real sea change in how cancer is treated and the life saving possibilities.  Maybe that's partly fundraising talk, a means to entice donors to support this research or the other, but the world is constantly changing and the unimaginable becomes normal at an astonishing rate.

I sometimes find myself feeling nostalgic for the way things used to be in the world when I was a kid.  I miss a lot of the good things about the way life was for us in the 1970's.  I think about my brother and me running through sprinklers or playing with the garden hose on hot summer days.  I remember sitting out with my grandparents every evening after supper all summer long, just enjoying the cool air and me listening to the grownups shoot the breeze. I remember roaming through the woods for hours on end pretending to be all sorts of things from pioneers to explorers to circus stars to crooks.  There were a lot of sad things about my life in those days, but there are so many sweet memories, too.

But if I look beyond my nostalgia, I recognize that in many ways our lives really are better now: in the tools of our daily lives, in child safety, and (importantly for me) in cancer treatments.  My hope is that in the next few years we look back at 2015 and marvel at how much progress we've made.

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.

Victorious

NC Wyeth, WWII

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

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

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

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

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

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

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

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

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

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

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

Halcyon Days

Autumn Leaves - John Everett Millais, 1856

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

__________

I'm living some halcyon days right now.

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

Halcyon days, indeed.

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

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

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

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

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

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

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

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

What hope looks like around here

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

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.