Up, Down, All Around

Bottecelli's stunningly pretty Primavera - I love this painting and
someday I probably should blog about how we were able to get
in and see it despite long lines and limited time, and in a completely
rules-following way, too (one of my proudest moments!).

But for now, just notice those are definitely primroses on that path!

Life has been good but cancer has been a little weird lately.  My tumor markers have been going up, up, up and are now at an all-time high but my scans have been stable twice in a row now.  Very strange.

My oncologist seemed surprised by the scan results the first time (or maybe that's just me still obsessively trying to grasp clues out of voice inflection and tone?) but she says the scans always trump tumor markers so we're just keeping on keeping on.  But it's strange.

Cancer usually changes all the time.  That's why stage iv patients have to keep changing treatments.  First something like Faslodex that prevents the cancer from feeding off of estrogen can work well, but over time the cancer evolves so that it does just fine without estrogen or maybe it figures out a different way to get around the Faslodex and still get estrogen, thank you very much.  At that point you're done with Faslodex.  So maybe you move to a different anti-hormonal that works on estrogen just a bit differently, but if/when that one quits (assuming it ever works in the first place), maybe it's time to go to a chemo like Xeloda.  Xeloda tries to sabotage cancer at certain times in the cell growth cycle, but over time the cancer adapts and Xeloda will stop working and it's time to try a different avenue of attack.  And so on, and so on.


Different people's cancers give off different amounts of the proteins measured in tumor markers.  That's why someone might have a few small spots of cancer and have tumor markers in the 1000's and someone else might have cancer on multiple bones, liver, too, and still have tumor markers in the low 100's (waves and points at self like a crazed game show contestant).  It can be a huge source of panic for someone with really high tumor marker numbers to realize how high they are in comparison to other people, but it doesn't necessarily mean they're loaded with cancer.   It's an easy rookie mistake, though, because it feels like it just makes sense!

Some people don't really have useful tumor markers at all, and for people who do, they usually do track well against cancer increases and reductions compared to the same person's previous numbers, but, my oncologist tells me, cancer, in addition to changing to work around treatments, can change in other ways and sometimes for some cancers that can mean changing so the same amount of cancer creates more of the proteins that are measured in the blood in tumor markers.  She thinks that's probably what we're seeing here.

Are we positive?  Well, no real way we can be.  But with two stable CT scans, two stable bone scans, and a clean brain MRI (except for the bone mets in my neck and skull bones that showed up, but we already knew about bone mets) there aren't really any places this much extra cancer can hide so it seems likely.  And, as long as I'm feeling well and the scans and liver/blood cell numbers aren't showing trouble, she thinks it's unwise to burn through the limited number of treatments available based only on tumor markers not backed by anything else.

So, until that something else happens, I keep looking at things like this:

 

and keep reminding myself not to panic.  Easier said than done, I'll admit, but in the absence of other choices, or at least other smart choices...

And, honesty, although I completely miss having these tumor markers serve as my own personal oracle, ignoring the tumor markers and skipping down my own happy primrose path does seem to get easier with time (primrose path's are quite lovely and a lot more fun than constant fear, after all).  At this rate, whenever my scans do get bad again, I'll probably be incredibly shocked even though of course, rationally, I know it's going to happen at some point.  Apparently, I just really like pretending I'm unstoppable, I guess.

But, until the scans tell me it's time to worry again, primrose it is! My (real life) garden is planted, I'm doing some alterations to our baby's prom dress and planning the graduation party with my husband (and there were people who told her I probably wouldn't live to see her graduate!), getting ready for a couple of nice trips, and generally going about life.

I've said before how in my opinion the uncertainty is one of the toughest part of this stage iv thing to deal with, but I guess for now a little bit of "ok at this moment" mixed in with a few decent scans and some nice distracting events isn't so bad a way to welcome the summer.

Who doesn't like good news?

I don't really believe in luck, but if I did I'd swear this

girl was dodging my every move yesterday.  (image source)

Great day yesterday! 

I spent the morning in the hospital and started another cycle of chemo.

Why is that great?  Well, I'll tell you why.

The hospital visit was my progress check CT scan and oncologist appointment, the chemo is still Xeloda.

If you're a mets patient like me, you've probably already made the connection and understand why that's great news.  But for everyone else, let me show you a bit about our world:

Basically, with metastatic breast cancer (and probably other incurable cancers, but I'm no expert), the routine is to use a treatment (generally starting with the one least likely to have the most unpleasant side effects, so for ER+ cancer like mine, start with the anti-hormonals and move on to chemos like Xeloda and then on to harsher chemos when needed), check the cancer periodically, and either continue with a treatment that's at least preventing continued cancer growth or switch off of a treatment that's failing and try a different one.

See why it's good that I'm still downing Xeloda pills morning and night? Yep, my CT scans showed it's still working.  Not only working but, actually shrinking the tumors in my liver!  That's great news.

CT also showed that the lesions on my bones are not visably growing and there are no new lesions on my bones that the CT could pick up.  And, my oncologist said it looks like a few of the eaten away parts on my spine are filling in a bit with some denser sclerotic bone growth (admittedly, cancer progressing can also look sclerotic under certain conditions, but in context my oncologist believes it's a good sign).

How much are the liver tumors shrinking?  I don't know yet.  My oncologist showed me the scan images from December and yesterday and, to my totally untrained eye, the biggest tumor looked about half the size, which is cool to see.  But the radiologist's report wasn't final at the time of my appointment so I won't get a copy of it to read the measurements for about a week until it shows up in my online interface. But still, it looked good and my oncologist was pleased, so I'll take it!

Other great things about yesterday:

• The hospital had switched from barium smoothies to an oral iodine-based contrast.  This tastes so much better and is much, much easier to drink and digest than barium contrast (barium is a chalky pulverized rock--suffice to say the barium "smoothie" doesn't get it's thickness from ice cream or yogurt).  That was 100% win!
• The CT technologist got a good vein on the first try!  Herself!  Without having to call in the IV team!  And it wasn't in my hand as a last resort which hurts like heck when the push in the IV contrast!  Again all win.
• Technology and patient-centered processes are a wonderful combination.  I went in at 7:40 am to start drinking contrast and had my results from my oncologist less than 5 hours later!  And that included time for her to walk down and discuss some things with the radiologist.  Do I love not having to wait for days for news?  Yes I do!  (and, incidentally, Blue Cross/Blue Shield, this is one of several reasons why I am not interested in your phone calls every time I get scan preapproval suggesting I cancel my imaging appointments and reschedule them to whatever random facility your software tell you will do it slightly cheaper. If you could stop with those phone calls already, I'd really appreciate it.)
• It was bright and spring-like when I arrived at the hospital and made my way into the basement rooms where they house the imaging department.  After my scans, as I was walking down the hall to oncology, I was noticing for the first time how beautiful the blue sky and soft, fluffy clouds looked overhead through the glass ceiling that covers that particular hall.  I'm told it was pouring rain in-between but I missed the entire thing.  Nothing but blue skies for me!
• As I was going up the stairs from oncology I happened to be there at the right time in the right weather to have rainbows under my feet where the glass under the railing reflected the light from the skylights--lovely.
• When he came home, my husband made his awesome chocolate-chip cookies and I ate several.  Hot out of the oven.  And they were delicious.
• And, of course, the best thing, I got good news to share.  And that's always a win!

Sometimes, at home, because I'm a dork, when things are going particularly well, I'll break out with "All I Do Is Win" (not the most PC of songs, but the refrain cracks me up).  Yes, I'm a 40-something wife and mother, but, like I said, I never claimed not to be embarrassingly dorky. I thought about using that as the title of this post ("All I Do Is Win," as the title, that is, not, "Embarrassingly Dorky" which is more true but less fun), but it seemed too much like tempting fate.  I have stage iv cancer so clearly I don't always "win, win, win, no matter what, what, what," but yesterday it was like the charm fairy suddenly decided to take up residence on my shoulder and stay there all day. And it was wonderful.

Another breakup, another blind date

Screen cap from Music and Muffins' video for Kate Nash's
"Nicest Thing." Now there's a beautiful broken-heart song for you.

On Thursday I had an ultrasound of just my liver to see how the tumors there are doing (turns out I was right when I said it seemed like the liver had moved to the front of the focus line.  With the liver stuff going on, those poor bone mets can't even get the time of day anymore).  

Yesterday my oncologist called to tell me that the ultrasound showed that there's some more measurable growth in at least one of the bigger tumors in my liver.  Fortunately, my blood tests show my liver function is still normal so it's not an immediate danger.  But it is a move in the wrong direction.

So that's the end of Ibrance for me.

As of yesterday, I am no longer taking those Ibrace pills I fought so hard to wring out of my insurances and specialty pharmacies.  I still have roughly $7000 of that stuff left over (which is only about 2 weeks worth, which is pretty crazy, isn't it?) plus a cool Ibrance pill case, but I'm going to have to toss them.  With Ibrance, I'm done.

Instead, in 2 weeks I will begin a different drug called Afinitor.  

As I was writing an email about the whole situation, it became pretty clear that if I just replaced "Ibrance" and "Afinitor" with a couple of guy names, it would sound exactly like I was writing about relationships.

Almost 2 decades after I found my real life love and settled down, I'm about to go on a blind date with Afinitor just 2 weeks after a bad break-up with Ibrance.  Roughly 6 months after being dumped by Faslodex.  And a year and a half after I had to give Tamoxifen the boot. Honestly, I really didn't enjoy dating when I was dating, way too much stress and unpredictability for me.  And still, here I am.

Ibrance seemed promising back in April.  On paper it was a good match: me with ER+ HER2- metastatic breast cancer, Ibrance: dashing around taking the breast cancer world by storm with brand new "breakthrough drug" status and a reputation for being kind. 

At first it was the little things.  A bad cold, some scary white blood cells.  We tried taking a break, dialing down the dose.  Things seemed better but it was getting hard to ignore the bad omens.  More growth in my liver, tumor markers staying about the same but never going further down (seemed ok at the time but in hindsight...).  I kept trying, telling myself maybe things weren't that bad, maybe they'd get better with just a bit more time. But things never got better.  It just had to end.

At least, as they say, there are other fish in the sea, and one of them is named Afinitor.

My oncologist has had patients do very well on Afinitor.  Some women online have, too.  There's lots of reason to be hopeful.  

So, as people do all over the world wherever there are people who date, I'm listening to a few sad songs, lying to myself I never liked Ibrance anyway, replaying things in my head trying to figure out what went wrong,and then, ready or not, I'll picking myself up, brushing off past failures, suspending my disbelief, and starting all over again with something new.

This is me, giving Afinitor half a chance to prove that even after everything that's come before, maybe, just maybe, this next one will be just the one I've been looking for.

What do you say, Afinitor, shall we give this thing a shot?

Scans and Insurance Issues

Abbot and Costello doing Who's on First

I had my CT scan as scheduled on Thursday and the appointment with my oncologist the next day where I got the results.  They were for the most part good.

There was some growth in the spots of cancer in my liver, so that's the wrong direction.  But it wasn't a lot of growth, measured in milometers actually, so that's something.

I guess, this is one of those times when oncology is an art as much as a science.  Generally speaking, cancer growth, and especially growth in a vital organ, means it's time to stop one treatment and move on to the next.  But it's not much growth and (as I'm sure you've noticed) I've been off of the Ibrance a lot more than I was supposed to be in the last 4 months as we worked to keep my white blood cell numbers in a safe range.  Is the Ibrance working ok but less well than we'd hoped or is not taking Ibrance what's been working less well?

We talked about the options and at my oncologist's recommendation, we've decided to stay on Ibrance longer.  My neutrophils are still low but not too low even after a full 21-day cycle, so I, hopefully, can keep taking it without the extra long breaks now.  We won't wait another 3-4 months for another CT scan, but will instead evaluate midway with a liver ultrasound.

So I'm still on the Ibrance and I get to break in my new pill case--might as well take good news where I can get it, right?

My oncologist also mentioned that she's thinking when the Ibrance/Letrozole does punk out, the next step will probably not be an oral chemo called Xeloda, but rather another combo hormone blocker plus a different drug that helps delay resistance, exemestane and everolimus.  I think the reasoning is that because the current set, unlike tamoxifen, hasn't been a complete and total failure, a similar type treatment holds promise for me. She also mentioned that there are some great things in development now, too, that should be on the market in the near-ish future.  I'm glad to have some treatments in the wings that don't include a straight path to chemo. We don't need to cure my cancer, we just need to keep one step ahead, and more less toxic treatments are the key to that.

-----

So, all good news?  Easy enough? I just get my next shipment of Ibrance and keep on moving, right? Ha!  Of course not!  Turns out that I can get my scans, my oncologist, the FDA, my tumor markers, my neutrophils, and my response to Ibrance and Letrozole all pointing in the same direction and still get a wrench in the works.

This time, it's my insurance companies.  If you're interested in the saga, go ahead and read on.  If not, I certainly don't blame you (I decided I wasn't comfortable listing the names of all my insurance and pharmacy companies here, so it's even more confusing than otherwise).

When I originally went on Ibrance in April, I was told it was covered under my [Company A] pharmacy benefit.  Ibrance needs to come from what's called a Specialty Pharmacy, which is different from your local in-person pharmacies and different from the usual mail order pharmacies (cancer: always a new teaching moment).  Under my drug plan, I was told I could use any pharmacy except [Pharmacy 1] Specialty Pharmacy.  So, I got set up with [Pharmacy 2] Specialty Pharmacy, dutifully applied for Pfizer's copay extender card to bring the $2000 plus copay down to $10 a month and planned ahead for the end of the year when we hit the copay assistance maximum.

So far so good.

Then in June, I was told Ibrance wasn't covered by my pharmacy benefit (at all? anymore?) but was actually in a class of drugs covered by my [Company B] medical benefit.  Good news because with cancer I max out my medical out of pocket maximum very early in the year so as long as I use their "in network" pharmacy my copay is $0.  Better and better. But who is their in network Specialty Pharmacy, you ask?  Of course it would be [Pharmacy 1] Specialty Pharmacy, the single Specialty Pharmacy on the planet I couldn't use under my [Company A] drug benefit.  That figures.

So, no problem.  My oncologist resends my prescription to [Pharmacy 1] Specialty Pharmacy, I no longer need to save for the end of year copay, there's a delay of a few weeks but since I was still waiting for my neutrophils to go up, anyway, it was all good.

Until yesterday.

Because that's when I called [Pharmacy 1] Specialty Pharmacy to make sure my refill would be sent.  The answer?  Not exactly.

Now I'm being told that they're being told Ibrance isn't covered under my [Company B] medical after all, I'm being told it should be under my [Company A] pharmacy benefit.  So does this mean we're back to [Pharmacy 2] specialty pharmacy where I already have the paperwork filled out and can just switch back to and get my drugs?  Of course not!

Turns out [Company A] is now [Company C] and as [Company C] they will only cover the drug under a new third specialty pharmacy.  Problem is, getting it from a new pharmacy means new delays and, after the scan results, waiting a few extra weeks to get registered with another specialty pharmacy makes me very uncomfortable.

Anyone still with me here?

Anyway, I think after a couple of hours on the phone with multiple different people at multiple companies, my Ibrance may possibly maybe be all set to arrive from [Pharmacy 1] on time (God bless the insurance specialist at [Pharmacy 1] if this really dose come to pass, I think there must be a very special place in heaven for people who have to deal with people like me).

I'd feel a whole lot better, though, if I hadn't been told so many different things by so many different people at several different companies over the last 16 weeks, but we'll see.

As a kid, I loved the old Batman shows (and lived for the ones with Batgirl in them, because as a young girl in the 70's I was pretty hungry for a little Girl Power!)--they always ended the cliffhangers with "Stay tuned!  Same Bat-time same Bat-channel!"  In real life, cliff hangers aren't always as much fun, but I'm going to have to leave you with one, anyway.  Hopefully, my [Pharmacy 1] specialist is right and I'll have a fresh new bottle of Ibrance 75's in hand by Thursday--stay tuned!

Neutrophils and an Ibrance Break

The protocol with Ibrance is to go in and have your blood counts tested twice a cycle for the first few cycles to make sure your blood cells (white, red, platelets) remain at safe levels.  This is because the CDK4/6 inhibiting action of Ibrance that's supposed to help slow the cancer's evolution can also slow down blood cell production.

So, per protocol, yesterday I had my blood counts checked and I saw my oncologist.

I didn't get horrible news, but it wasn't really good news, either.

It turns out my neutrophils really don't appreciate having their CDK4/6 inhibited.  They've dropped down to an Absolute Neutrophil Count (ANC) of 810. 

Normal ANC is, according to my lab reports, generally between 1400 and 6600 ANC.  Throughout 2014, my ANC remained in the 3000 range, so 810 is not normal in general or for me in particular.  And for Ibrance, anything lower than 1000 is considered too low to continue as planned.

Neutrophils are a kind of white blood cell that, according to Wikipedia, "form an essential part of the innate immune system." So they're not really something to get too careless about.


My oncologist showed me the protocol Pfizer has issued for Ibrance.  Per their guidelines for ANC between 1000 and 500, I am off of Ibrance for at least a week, possibly longer, until I can grow back enough neutrophils to be back up at a safer level.

Plus, when they do go back up, I'm not going to be allowed back on the 125mg dose of Ibrance I was taking.  I'll start back on 100mg and see how that goes. 

I asked my oncologist the obvious question: will this reduce effectiveness? She says that in the clinical trial about 25% of patients needed to lower the dose for one reason or another but it didn't seem to correlate to a direct drop in progression free survival (or something like that, I was honestly still a little distracted by neutrophil numbers).  I know it wasn't exactly, "of course not!" but it also wasn't "of course it does!" So at least that's something.

I also just yesterday read about a woman on Ibrance who had to take a full month off with low counts and, after that, was taking the 100mg dose and still had a nice stable scan.  I know, I hear you, the plural of "anecdote" isn't "data", but still, it's not a bad sign.

Does it make me a little nervous to be off of Ibrance before I even finish my second cycle?  Yes, it does.  Does it make me a little nervous to be on a reduced dose of Ibrance when I get back on it?  Yes, that, too. 

But, on the other hand, I am still fighting the after-effects of my second cold in 6 weeks, so having more neutrophils does have some appeal.  And if taking a lower dose can get rid of the sore nose-throat-windpipe side effects I've been be having, that would be a good thing.  And maybe the headrushes when I stand up and the general fatigue that's been hitting me in the afternoons, I wouldn't mind getting rid of those, too.


But, none of these other side effects seem like deal breakers for me if the drug is working.  In fact, if I wasn't taking Ibrance and being aware of things like that, I'm not sure I'd really give them much more thought beyond a, "hmm, that's odd," sort of response. Probably followed by the same strong coffee to get through the day and early bedtime for the fatigue.  Same as I've been resorting to lately.  But, it's probably not something I'd have been super concerned about without Ibrance.

Of course, bacterial and fungal infections, inability to fight off the naturally occurring bacteria in your mouth and digestive tract, septic shock, and things like that are serious deal breakers.  And that's what is increasingly likely if my neutrophils continue to drop and head down past the 500 ANC range.*  Which is, of course, why Ibrance is off the table until I can grow back some neutrophils.

Because it doesn't really make much sense to take Ibrance to try and hold off death from cancer just to turn around and die from septic shock.   That's pretty obvious.

So I'm not an Ibrance drop out (hooray, me!) but I am, more or less, in Ibrance detention hall.  And no idea for how long.  But with any luck, when I go back to retest next week, I'll have some better numbers and be ready to get back into the Ibrance club.

In the meantime, if you need me, I'll be the one sitting over there in the corner studiously working on growing  neutrophils.

___
* I don't really know what the protocol is if my nuetrophils were to get below 500, but my guess is there'd be some Neulasta injections or other interventions.  The first step is to do what we're doing: stop killing those neutrophils.  But if it got worse anyway, my guess is they'd take steps. I do know they're watching me and aren't going to just sit back and watch sepsis set in, so don't be concerned about that.

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.

Moving on

Edward Hopper - Compartment C Car

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

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

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

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

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

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

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

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

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

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

2015

My older brother and me, 1976 style

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

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

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

And now we're in 2015.

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

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

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

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

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

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

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

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

A very good day

Today I got my latest scan reports:

For those of you who don't speak cancer and/or radiology (and never mind the slight/slightly thing, because that is not what matters here!), it means the cancer hasn't spread in the last 3 months and some spots even seem to be getting better--this is fabulous news!

No guarantees what the next scans will hold, of course, much less the future as a whole, but for now and most likely for the next 3-4 months, it means stay the course and feel very happy, which is exactly what I'm going to do!

Of scars and bone

From Katie Thamer Treherne's lovely
The Light Princess illustrations.

When I was in high school, I used my own money to sign myself up for some adult beginner ballet lessons.  For pretty much my entire childhood I had wanted to learn ballet--never mind that the '70's and '80's were an era where the ideals of girlhood were more about sassiness and tomboys (think Paper Moon and The Bad News Bears)--underneath my '70's and '80's approved tough-stuff exterior, I longed for pink slippers and tutus so badly I could practically taste it. 

As instructed, before my classes began, I had gone to a local ballet shop and was fitted for a pair of soft pink Capezio ballet slippers.  And because it's not like I just started being a dork when I turned 40, after I brought them home, I spent a fair amount of time looking them over carefully, noticing the little pleats under the toe, the soft sheen of the fabric binding where the cord threaded through, the feel of that buttery soft, gently pink leather.  And it fascinated me that one of the slippers had a little scar in the leather, a tiny curved line healed over from a little cut where the animal must have brushed against when it had still been alive.

I was reminded of that scar again talking to my oncologist this past visit.  It turns out that our bones also scar.  With bone mets, the whole idea of NED (No Evidence of Disease) is a bit of a misnomer.  Even if my cancer were to be completely wiped away, the evidence would still be there in the sclerotic areas (abnormally dense and irregularly formed bone growth) growing in where the lytic (bone destructive) lesions had been.  Even if we were to get to a state where my bones were completely free from cancer (granted, an unreasonably lofty goal at the moment), like that little scar near the toe of my ballet slipper, my bones, in life or years after I'm gone, would always have marks that tell the tale of what has happened with me and this cancer.

The confusing thing is, as it turns out, new active mets can also be sclerotic, so sclerotic spots aren't always a sign of healing.  They can be healed bone scars or they can be the bones interacting with active cancer.  So they can be a great sign or a depressing one, depending.

So, back to those scans, the news is that I have several brand new cancer-related sclerotic spots (dense areas of abnormal bone) on my lower spine, a previously unremarked upon vertebrae, my right pelvis (along with the long-known mets there), and on my formerly thought to be clean other femur.  Most of my mets were mostly lytic (the kind where the cancer eats away at the bone), but now there are also many little sclerotic spots but in new locations.

Since new active mets can be sclerotic, the scan report included text about the new spots saying, "It is unclear if this represents response to therapy or new metastatic disease."  That's the sticking point, the newly dense mets are either a sign that the meds are working well or a sign that they're starting to stop working well.  How's that for clarity?

My oncologist, looking at all of this within context of not just my CT scans but also my bone scans (among the usual bright bone spots there were also some notably less bright than before spots--which is what my girl-detective self thought I saw) and my general cancer history, was pleased.  She believes these are healing areas of bone-destructive mets, rather that new cancerous lesions of the abnormal bone building kind.  Meaning her assessment is that things are going well and some of the cancer is dying a bit (I think that means that the new ones are assumed to have been there but not really visible when they were just missing bone and not dense built up areas, but I clearly don't have an oncologist's training or knowledge about these things).  So this was good news, but the kind of good news that sort of leaves you not quite sure if you should really celebrate or maybe that might be a bit too hasty?

The unequivocally good news was that there was still no evidence of cancer spread to my organs. That was nice.  But, despite my oncologist's assessment, the bone thing was hard to feel easy about.  I felt like I should be thrilled at a good report and celebrate, but in the back of my mind I kept thinking, "Well, but what if it is spreading and my meds aren't working any more and...."

So mostly I was happy, but also holding my breath, not quite sure if I should relax for a few months of relief (at least until the next scans) or remain a little wary.

Fortunately, a few weeks later, I received my latest tumor marker results in the mail and those are down, too, which is good.  In fact, the number is now nearly half what it is in April and actually now just a few digits above the normal range.  Mentally, that news was the confirmation I needed to breathe again.  The markers match the good news side of the scans, so it seem I really am doing well right now, or at least signs are pointing that way.

For those of you keeping track at home, I now have a mix of sclerotic and lytic mets in my skull, neck bone, mid-spine, a rib, lower-spine, all across my pelvis, and on both femurs.  But, thankfully, it seems my meds are still fighting the good fight. Way to go, meds.

____________

And, while I won't publish this post until I read it over again tomorrow, right now as I type it's Saturday, November 8, so Happy International Day of Radiology, everyone!  It's held each year on the anniversary of the day Wilhelm Conrad Röntgen discovered x-rays, which, using knowledge about them gained from Marie Curie's related work, allow us to keep tabs on my cancer and know whether or not my treatments are working without cutting me open, which I think is extremely miraculous.  Here's to you, Dr. Röntgen and Dr. Curie, well done!

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.)

Tumor Markers (or more good news!)

Chagall - Dance

This weekend I spent a day with a bunch of fabulous ladies who I've been friends with since my days as an overstressed and insecure undergrad (yes, that's right they knew me when and like me anyway, how about that?).  It was a wonderful time, and, truth be told, it was also just what I needed.  I've been a bit of a stressmonger with all this cancer stuff, and hanging out with old friends chatting, eating, and mulling over life was really nice.

And, you know what else was really, really nice (and cancer related)?  While I was there I got a call from my husband telling me I got a report in the mail from my doctor with the results from a recent tumor marker test which, like my scan results, point to good news.

I had gotten a blood work order in the mail in late March or early April that indicated I'd be getting the usual cancer blood work and also something called CA27.29.  At the time, reading the list of tests, I had actually assumed this CA business was something to do with calcium--not true, but what I thought at the time.

In fairness to myself, Ca is the chemical symbol for calcium and bone mets can put too much calcium into the blood because it dissolves the bones and Xgeva can leave you with too little calcium in the blood because keeps the bones from dissolving in a superpowered kind of way, so it wasn't that crazy a guess (or at least that's what I tell myself).

I really do try not to get my cancer knowledge unquestioned from the internet, but of course I later googled it.

It's obviously true that I'm not an oncologist and also true cancer doesn't give you super cancer knowledge because it turns out CA 27.29 has nothing at all to do with calcium.  The CA actually stands for "cancer antigen" and, as it happens, the test checks levels of a specific something that cancer can give off into the blood (for anyone interested, the best website I found on it is here).

I'd read other people posting about "tumor markers" and it turns out that these are what they were talking about--who knew?

So, not to belabor the point (or at least not to belabor it more than my belabor loving self can't help but do), I had the same test again on my blood work order for June and I got a report in the mail last Saturday.  The report listed my CA 27.29 lab report for June and a note from my oncologist:

This tumor marker came down from [number here] in April--Looks good

I'm still not an oncologist, and I do understand that at some point things will most likely change and we'll need more and more different treatments and "out of the woods" isn't something that happens with metastatic cancer, but when my oncologist says "Looks good," well, what the heck, I'll take it!

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.

Good news!

Cliff Chiang's Wonder Woman

I got my scan results today and despite the hip pain, despite my fear, my cancer is looking stable, which is excellent news!

It seems a bit strange, I suspect, to people not dealing with cancer like this, because basically my scans told them I have cancer in a number of bones, but it's the same cancer in the same bones and not cancer spreading to new places.  It's not in new bones and it's not in my organs, so that's very, very good news.  Cancer gone would be nice, but stable is the name of the game and stable I am!

I'm thanking God tonight, that's for sure!

I was thankful to get more injections and be able to continue getting the injections.  Thankful to look at the paltry number of steps I've gotten in today and plan to go out when the heat abates to try and sweat through to 10,000 steps for another day.  Thankful to set my alarm to wake up and go to work and not  have to plan to add chemo to my schedule.  Thankful to take a little Advil for the hip thing since I'm no longer wondering if I'll need to stay off blood thinners so they can insert another port for infusions.

I'm sure I'll be back to complaining soon enough, but it would really take some doing to bring me down tonight, that's for sure :)

Post 48, In which I am Jacob (sort of)

Paul Gaugan - Vision after the Sermon

It seems like some bible stories get a lot of play both in and out of a religious setting (Noah, I'm looking at you!), some seem to never, ever come up in or out of churches, and some are just sort of "also rans" in the world of bible stories.  I think the one about Jacob wrestling with God (or an angel, I think it depends on the translation) is one of these "also rans," but it's one I've been thinking of a lot lately.

For those of you who didn't grow up with Arch books and Taylor's Bible Stories (which, let's face it, is probably all of you except my brothers and I) and are not fascinated by Puritan naming traditions or fangirling on the Mayflower passenger Wrestling Brewster (which, let's also face it, isn't going to be a lot of you), although I trust some of you still know about Jacob wrestling, let me give a very brief summary:

Jacob stole his twin brother's birthright, ran off to another land, worked for the right to marry one girl but was tricked into marrying her sister, worked some more and married the girl he wanted to marry, had a ton of kids through both sisters and their maids, stole some more stuff from his father-in-law and ran out in the middle of the night to return home to his presumably still really ticked off twin brother. 

On the night before he was to cross the stream into his brother's land, he sent his family across and spent the night alone.  Some strange man came up and fought with him but neither of them could overcome the other and, at dawn, the stranger tapped his hip and put his leg out of joint.  Finally they agreed to stop, Jacob demanded a blessing, the stranger revealed himself to be God (or sent by God) and blessed Jacob, but his hip never did get better.

I can see why this one is in the "also ran" pile, it's kind of a weird one and hard to make out exactly what the heck it's supposed to mean.  Good thing I blog about cancer and not biblical studies, because I'd totally throw up my hands and shrug over this one.

But, as I've mentioned before, even though my cancer is in a number of bones, it's really only my hips that have been painful and fragile enough to require me to remember not to do certain things. Radiation for me is not curative but just palliative (to kill enough cancer to stop the pain), and the radiation therapy I've gotten at stage iv has only been to my left hip.  And while I was feeling better for a while after that, in the last week or so, I'm feeling pain again not in the left hip but, this time, in the right.

So, lately I've been thinking of Jacob and God putting out his finger to give him life-long pain in his hip and wondering what it all could mean.

With cancer, probably at any stage, there's a lot of wrestling with God (or the universe or fate or whatever for those who don't believe in God).  I wish I had some idea what it all meant.  Why am I the one who puts my family through this? And why them? What have I done that I'm the one wondering if I'll live long enough to see how things turn out?  Why would anyone pick my sweet husband to be widowed and these kids to have to deal with this, my daughter to be motherless?  It's, to put it frankly, a pretty crappy thing.

I wish I could be like Jacob and just demand a blessing and limp over the river at dawn to a spiffy new life in a new-old land (at least until the whole Dinah so his sons murdered everyone in town, followed by the whole famine and Joseph sold to Egypt thing, which is another popular one, which I know because even my public middle school did a production of "Joseph and the Amazing Technicolor Dreamcoat" back in the day, so you know that story's made it to big-time).  And maybe I will end up with a great outcome, because, afterall, who knows?  It could still work out great.

But the new hip pain worries me, because, while I don't know the cause right now, new pain is not a good sign and could often indicate that the treatments I'm on are not doing a terrific job of keeping the cancer from continuing to grow.

Unlike Jacob, of course, I do have medical imaging and the combined forces of research and oncology on my side.  I had a bone scan and a CT scan last week, results to be discussed this coming week, so I'll have a few more pieces of the "what does this all mean" puzzle soon (at least in the physical sense. I don't know what kind of image it would take to clear up the spiritual questions but whatever it would take would probably net a pretty penny on Ebay).  Also, where this is all going to go in the end isn't something scans can tell me right now, although they should do a good job of helping decide whether we'll stay the course or go to something harder.

Modern medicine could have totally fixed Jacob's hip, or replaced it, or whatever.  But the story would still be really strange because a medical diagnosis wouldn't have answered the bigger questions like why God picked a fight with him and damaged his hip in the first place and what it was supposed to mean (it also wouldn't have kept him from being kind of a jerk and stealing from all kinds of everyone and being a really dysfunctionally bad father even after all the blessings he got, but that's going to have to be someone else's blog topic, not mine)

For those of you who've followed this whole indulgent post and have managed to keep your questions about brain mets to yourselves, thank you (and, for the record, brain mets are unlikely right now, not enough symptoms).  For those of you desperately looking for the exits, here's the TL;DR version:

My other hip hurts and I don't know why but I had some scans.  Also, I'm having trouble figuring out what it all means in the physical and universal senses.

More news later this week.

An Update and Baby Steps

Van Gogh - First Steps, after Millet

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

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

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

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

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

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

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

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

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

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

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

Nice.

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

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

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

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

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

Not a fortune teller

John Singer Sargent - El Jaleo

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

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

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

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

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

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

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

Turns out that relief was short lived. 

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

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

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

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

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

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

Faslodex, you are very strange

Conceptual Faslodex in action, from AstraZeneca's video here

As I've mentioned before, one of the medicines I'm on to try and control the cancer is an injected drug called Faslodex.  It's given as 2 intramuscular injections every 2 weeks for the first 3 doses and monthly thereafter.

And it is a strange, strange drug.

For me, anyway, on the day of the injections the injection sites have this kind of cold burning pain.  About a day after that, the muscles it's injected into ache.  And after that, the bones in my hips ache.  Then the bones in my spine ache.  Then the muscles in my back ache.

And then, about a week later, after everything has settled down again and I'm feeling good, the muscles where it was injected ache, then the injection sites again have this kind of cold burning pain.  And then the bones in my hips ache. Then the bones in my spine ache.  After that, the muscles in my back start to ache.  And then....

It's certainly managable, not that terrible, and definately less painful than the pain I was having from the cancer itself before radiation zapped it away.

But it's really, really weird.

It happened with my first does and now with my second dose, too.  And last week along with the Faslodex, I also had the Lupron injected into the muscle and it brused a bit and was easily forgotten, so I'm pretty sure the issue isn't the injection and isn't the muscle, it seems to be the Faslodex itself.

From what I read online from others on the drug, not everyone has the same reactions, and for some people it's different each time.  I have another injection of it next week and after that I go a month between doses--I'm curious to see if continues and how it goes with a full month in between shots and whether it goes more smoothly with time.

Of course, in all honestly, even if it does stay exactly this way over and over for as long as I'm on it, I'm ok with it.  As long as it does what it's hoped to do in terms of slowing the cancer, Faslodex and I will be getting along just fine.

But is it very, very strange.