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.

A few Xeloda bits and pieces

Illustration by Joanne Negro from Wonder

Books' Let's Give a Party

I've obviously been thinking a lot about Xeloda these past few weeks.  "Thinking about" mostly means incessant Googling, worrying, wondering, and guessing.  But it also means talking with my oncology team and doing what they say.  So, and this is mostly for those of you who find yourself on Xeloda, but it's sort of a progress report, too, I have a few Xeloda related thoughts I'd like to share.

30% - Assuming I'm reading things right, Xeloda works in only about 30% of women with metastatic breast cancers.  That sounds terrible in real world stuff ("here, take this pill, it has unpleasant side effects and less than 1 out of 3 people found it either helped or at least kept things from getting worse"), but that's how these things go when your dealing with cancer.  I know I'm not going to convince anyone I'm made out of luck since I have this cancer thing plus I never, ever win raffles, but I feel like blessings are raining down on me that the first preliminary indications are that I'm one of that lucky 30%.  And the side effects haven't been so bad all things considered.

Fatigue - That's one side effect I've been feeling but I'm actually finding that in addition to early bedtimes and resting when I can, surprisingly a little moderately paced walk helps.  Well, that and sometimes coffee.  I'm finding that I'm having more trouble sleeping during my 7 days on weeks, so that might play into it, too, hard to say.

Nausea - This was hard the first week.  It wasn't the terrible all consuming nausea like I had the first day or two in 2012 before we got the right mix of antiemetic drugs during my stage III chemo, but it was happing a lot and it was unpleasant.  But I think I posted about my oncology nurse practitioner's advice to try taking a daily Prilosec (or 2 a day if it sort of helps but not all the way).  I thought it sounded a little unlikely to help since I wasn't having reflux or acid-type symptoms, but given that she's a) smart, b) experienced, and c) trained in oncology, I gave it a shot.  Besides, as she told me (and as I remember from 2012), traditional antiemetics tend to have more unpleasant side effects (sleepy, jittery, foggy, twitchy--tons of fun!) and if the Prilosec doesn't help those are still on the table.

And, I'm happy to report, I'm glad she's on my team because the nausea was much, much better the 2nd and 3rd cycle where I was also taking Prilosec.  I had a few waves of it during the week, but not so bad that I wanted to reach for my Compazine and not enough to impact my life.  I'm calling this a win!

Hand and Foot Syndrome - This side effect has been tricky.  I've been moisturizing all the time and had even taken to gooing up my hands and feet with Aquaphor ointment at night and walking around in white cotton gloves (think Mickey Mouse or a butler) to protect them, but was still finding my hands hurt and I was developing some raw spots on my hands and hard callus-like patches on the balls of my feet.  They seemed to be getting slowly better on my off weeks of the 7-days-off-7-days-on Xeloda cycles but starting up again quickly just a few days later when I was back on the on week.  It wasn't, so far, bad enough that I would need to cut back on the Xeloda but since the H/F thing is cumulative, it was a worry for me.

But, talking with my oncologist this week, she suggested trying 20% urea cream.  She mentioned Udderly Smooth Extra Care 20 as a good one, but the 20% urea was the important part rather than the magic of udder cream in and of itself.  As it turns out, my older brother (who, to the best of my knowledge can't predict future oncology recommendations, but I may need to rethink that one) gave me a tub of that at Christmas, so it was easy to give it a shot. 

One of my sisters-in-law always says to make sure you have the smart people on your team, and I'm glad I do because at least for me the 20% urea cream made a big difference.  The feet are better and the hands are a lot better in how they look and feel.  Everything isn't perfectly normal, but much easier to live with. 

I couldn't find the 20% urea Udderly Smooth in my local drugstore, but I did pick up some Excipial brand 20% urea cream to keep in my purse and desk because, like the Prilosec, things that are working without much downside are worth keeping on with.

Moving Forward - Well, first and most constant prayer is that the tumor markers continue to drop and future scans show things getting better or at least not getting worse, and that those things will repeat over and over again for a long, long time (or forever, because forever would suit me just fine). 

The fact that Xeloda seems to be working for me so far is a big win and the fact that the side effects are so far very manageable is also a win. As is the fact that, so far, there's no reason to need to drop down the dose or take and unscheduled break from it as has been my recent experience with the last few cancer drugs.

And honestly, for me, with the right steps, the side effects have been really manageable.  I'm able to work and cook, clean and take care of my home and family, do normal things without a whole lot of changes.

It seems from breast cancer forums I read that a lot of women are starting Xeloda recently.  It may be just that I wasn't paying attention before, or maybe it's that a lot of women started Ibrance when it was first approved and if you gave that the required 3-4 months and then a different antihormonal like Faslodex or Afinitor another 3-4 months, that brings us to now and Xeloda as a good first line chemo to try. 

If you're one of those women trying to find out what to expect with Xeloda, hopefully this will give you at least one snapshot of what at least the first 5-6 weeks of Xeloda can be like.  Not as good as not having cancer or not being on chemo, but not that bad, either.

And now I'm off to do the breakfast dishes (yes, it is after 12:00 noon now) and then I'll take down my Christmas tree and pick up some groceries.  Because I'm feeling well enough to do that sort of thing.  And that, to me, is exactly what winning is made of.

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.

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.

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.

A quick one on exercise

I know I've been MIA for a while now, again.  I apologize for that.  I'm happy to say I am still doing well.

I've seen someone about some brain issues, probably lingering chemo stuff, not very likely directly related to cancer itself, thank goodness. I'm planning on blogging about that at some point.

Also have scans scheduled next week. It seems like I just did that, but fall is a busy time and it seems to make my days fly.

Probably speeding things up even faster is that this is my first stage iv Christmas and I'm simultaneously feeling the urge to celebrate how well I'm doing and to make it a good one in case next year is not as good or even worse than that.  For me, that mostly seems to involve baking and cooking.  And eating, lots of eating.

On the other hand, although I did take a couple of days off for Christmas eve and Christmas day, and 2 particularly busy days of prep the week before, I'm still getting my steps in most of the season and plan on continuing that moving forward. 

It's funny, because I've always known exercise is a good idea (who doesn't?) but I guess when an oncologist tells you something, it just carries a little more weight.  And for me, at least, that's made it much easier to be consistent.  And to get back up and try again the next day if I've had a particularly bad day.

I've been doing this step counting thing for 221 days now. It took me a bit to get into the routine, but I've now only missed the 10,000 step goal 9 days out of the last 190 or so (I love spreadsheets and tracking things, can you tell?), so that's something I'm proud of myself about.  As a kid I had a bad reputation with my mom for not finishing projects, and goodness knows I've had a number of self-improvement plans fall by the wayside over the years, so setting and actually meeting goals like this feels especially good.

I recently read this article titled, "Research: Breast Cancer Treatment Should Address Obesity," which has me again thinking more about exercise and cancer.  The article says a lot about exercise and quantifying how much it helps reduce the odds of relapse.  I know it's too late for me to worry about relapse since I'm already well down that particular path, but I have to think the benefit is still there. 

I don't know that everyone finds their oncologists motivating, and having cancer is stressful and I know for a fact that it doesn't always inspire the most rational thought processes (been there, done that, and oftentimes still at it), but I think it is a good idea for oncologists to talk about this kind of thing with their patients.  It runs the risk of sounding like blaming or piling on to add this discussion to the mix, even if it's addressed carefully (I often wonder if things would have gone better if I'd been exercising regularly immediately before 2012 or for most of the time between 2012 and 2014), but when you have cancer, you have so little control over what it's doing inside you that I really think it's helpful to have at least this one small thing that is in your power.

Anyway, Happy New Year, everyone! 

Halcyon Days

Autumn Leaves - John Everett Millais, 1856

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

__________

I'm living some halcyon days right now.

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

Halcyon days, indeed.

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

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

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

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

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

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

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

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

What hope looks like around here

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

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

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

William Rimmer - Flight and Pursuit

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

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

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

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

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

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

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

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

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

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

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

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

Half a million

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

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

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

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

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

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

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

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

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

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

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

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

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

Again with the garden

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

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

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

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

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

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

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

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

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

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

But then I thought about these:

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

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

So now I have this:

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

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

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

Magic comes with a price

Katie Thamer Treherne - illustration from
A Little Mermaid

Yesterday was not my best day ever.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And I felt a whole lot better.

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.