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! 

Seventeen Magazine

Me in red, back in the day.

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

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

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

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

Yes, I really was once that naive.

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

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

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

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

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

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

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

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

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

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

William Rimmer - Flight and Pursuit

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

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

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

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

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

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

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

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

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

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

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

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

Half a million

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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.