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.

Post 103, in which I get a wire in my vein and an excellent surprise

Garth Williams from Little House in the Big Woods

Living with cancer means living with constant uncertainty.  For me that's one of the worst things to deal with.  You never know what's coming next and every single decision you make feels conditional.

Thursday I had my scans, a bone scan and a CT scan.  A good and a bad surprise there.  The good surprise was that my facility seems to have changed their oral contrast protocol, they've gone from nasty barium "smoothies" (2012 through 2015) to something else (iodine based, I think, early 2016) that tasted and felt better, to no oral contrast at all  (October 2016, February 2017) which is better still.  Twice in a row now it's been no oral contrast, so I think it must be a done deal.

I guess that's the joy of being a "frequent flyer."  Most people wouldn't know what they were missing, but with more CT scans than I can remember it's enough to know which flavors of barium smoothie to request (berry) and which to avoid at all costs (mochaccino), I know what I missed and I was thoroughly glad to miss it.

The bad surprise was apparently I don't actually have veins in my arm.  Ok, that's an exaggeration, I do have veins, but they're getting wise to the world of medical procedures and I guess they've decided it's time to fight back.  The first stick got in but hit some scar tissue or a valve and the IV had to be scrapped and the vein team was called in.  The vein team nurse tried again and the second vein collapsed so she decided to call in the top vein nurse.  The top vein team nurse tired a few different things and eventually called down a 3rd vein team nurse to put something called a midline catheter in a vein in my upper arm using ultrasound to guide it through.  More dramatic than I would have liked and kind of bad that it added an extra couple hours to the schedule, but, still, highly effective.

So I had my scans and went in the next day for my appointment with my oncologist.  I was honestly expecting, what with those rising tumor markers and having discussed potential next steps at last month's appointment and all, that she was going to tell me there was progression. Instead, I got an excellent surprise: turns out I'm stable and continuing on with Xeloda!

I asked about the tumor markers, but my oncologist told me that sometimes the same amount of cancer can evolve into one that just gives off more markers, so it could be that.  But also, she feels that it's not a good idea to switch treatments on tumor markers alone if I'm feeling good and the scans (and therefore the bones and liver) aren't getting worse.  You use up treatments that way for no good reason.  I like the way she thinks, it makes sense to me.

There had been some lessening in the cancerous lesions in the scans before this one, so I guess the news isn't quite not as great as it could be, but keeping the beast at bay another few months and not burning through another treatment is still, I think, always good news.

So now I'm in my kitchen, getting ready for the Superbowl.  Between typing I'm stopping to turn the bacon frying for potato skins.  Crockpot pulled pork is cooking away, a Turkish-Lebanese bread with feta and walnuts is rising on the counter and artichoke dip is mixed up and ready to heat. I'll be making cornepones to go with the pork closer to game time.  Our "baby" and I spent time yesterday trying on prom dress styles (with photos carefully emailed to her sister) and looking at fabric and patterns so I can begin sewing a dress once she decides on a style.  Nice to be here feeling well and feeling able to do these things I love, almost 3 years after my stage IV diagnosis, going on 5 years dealing with cancer.

It's good.  And I'm glad to be able to put off worrying about the next treatment, the next side effects, and how well the "next" will even work and if so for how long, at least for another few months.

I hope "our" Patriots win, but (and don't tell the rest of New England this), it's ok with me if they don't get this one.  I'm still going to consider this a winning kind of weekend.

Distractions

Sans (female) by Eric Fortune

Has it really been 5 months since I last posted?  Doesn't seem like it but clearly it has been.  Sorry!

I'm happy to report I'm still ok, showing signs of starting to fail on Xeloda, but nothing too dramatic.

Mostly, it's those stupid tumor markers (still? again? always?).  After that nice dramatic slide when I started Xeloda, it looks like my cancer's doing what cancer does: evolving around the treatment.  Regular blog readers and metastatic cancer patients will both recognize this as a regularly recurring  theme with cancer.   You can throw all kinds of everything at it but all the while it will be figuring out how to get around it one way or another.

No matter how much I just want to have this cancer wiped out and stop having to worry about it, that's not how it goes.  It's really just a life-long game of wack-a-mole, over and over and over again.  And lots of prayers that, God willing, there will still be mole-hammers aplenty to keep on whacking.

So anyway, tumor markers. Since last September, mine have been slowly going up.  Not a lot, just a little bit each time, a tiny little jump but it just keeps jumping.  So that's not terrific news.

I had scans (bone scan and CT) in October which showed some nice improvement since the April ones--the mets in my liver shrunk by two-thirds.  But it's just comparing 2 snapshots, without a lot of info on what's in between.  And besides, those tumor markers...

And on top of that, I ended up having a brain MRI earlier this month.  I'd been having these weird headaches on only the right side and they weren't getting better.  So of course I was afraid.  I had headaches and rising tumor markers and breast cancer which most likes to metastasize in bones, livers, lungs, and brains.  I wasn't 100% convinced it was brain mets, but I wondered.

Thankfully, my brain is still clear and I can stop googling "whole brain radiation" and "cyberknife" and "skull immobilization frame", so that part's good. And the MRI did show why I was getting those headaches, so that's also good, or at least helpful.  But it turns out some bone mets on my skull and the part of the spine at my neck are causing the weird achiness, nice and clear on the MRI and in exactly the 2 spots where I've been feeling them, so that's not terrific.

I still think it beats brain radiation, so I think I still get to count this one as a win.  But, obviously, as far as wins go, it's a mighty shaky one.  You kind of have to squint to see the victory in it.

So, in light of those tumor markers and the win-not-win MRI, plus just regular scanning protocols, my oncologist ordered more scans and talked with me a little bit about what comes after Xeloda, assuming thing keep going the way they seem to be going.  Not exactly what I want to deal with, but it's amazing what you can put up with when you don't really have a choice.

Now in the meantime, life's been pretty good, actually.  My stepdaughter got a great new job, my daughter got accepted to 2 colleges and is waiting on the third.  I started taking a dance class, had a nice Christmas and New Year's, some fun adventures, lots of great cooking, and am planning a nice couple of vacations later this year (assuming cancer and whatever's coming next is cooperative, but the expectation is that it will be).

I think if the only thing I had in my life was cancer, I'd be in a pretty sorry state.  I'm really glad it's only part of my life--an unpleasant part, to be sure, full of frightening news and unpleasant side-effects and a "can't look away" kind of way of drawing your attention all the damn time--but still it's not the only thing I have.  Which is a very good thing.

Now we'll just have to wait and see how these next scans go.  Never a dull moment with cancer, I guess.  More info coming soon.

43.0

Can't believe I fell asleep before I posted yesterday!  I got my tumor markers and they, thank God, continue to be stable.  43.0 so even a little lower than the previous 45.1.  I'll take it!

Going down

Got more tumor marker results on Monday, down again, which is the good direction (as one of my nieces wrote, "Keep it up! And by up I mean down!"). 

Here's the latest:

Just 7 points from the "normal" range, dropped 70% in the last 4 1/2 months since starting Xeloda.  As you can see, I haven't had numbers this good since 2014, before Faslodex started to fail. 

Nice, right?  I hope to have a lot of time to get used to this. Go, Xeloda, go (and by go, I mean stay)!

Well, would you look at that!

I'm in the middle of my 6th Xeloda cycle now and yesterday I got the results for the tumor markers from my latest oncology appointment.  Take a look:

See that steep downward drop at the end?  Pretty, right?  That's the additional 40% dive they took from 127 to 76 over the past month on Xeloda--very good news!

My liver numbers are back in the normal range, my tumor markers are dropping noticeably, and the Xeloda side effects aren't as bad as I'd feared.  Win, win, and win!

Normal for this type of tumor marker is below 40--I've been close to that on Faslodex, but never quite got there as a stage IV patient)--but if things can just keep on this way, I'm beginning to think it may be possible.  Wouldn't that be cool?

But whatever the future holds, thank God right now I'm responding well to this drug. 

To exhale

Caspar David Friedrich's Wander Above the Sea of Fog 

I feel like I can finally stop holding my breath for the first time in 5 weeks.  Or maybe the first time in 9 months.  Whichever.

This evening I got a note from my oncologist with results of my latest tumor marker test and my tumor markers are actually down.  From 157 to 127 in  the past 5 weeks, just like that.

Finally another drug that's started out by working, thank God.

It's been a while. 

Except for a 1-time dip in June, I'm pretty sure this is the first time the tumor markers have been meaningfully down since July of 2014.  Even for most of my time on Faslodex, they were mainly holding steady.  And then, as regular readers will know, 2015 was a year of multiple failed drugs, ever increasing tumor markers, and scan after scan showing things going in the wrong direction.

It's a great relief to have some good news for a change.

I promise I really do understand that the expectation is still for the cancer to work it's way around Xeloda sooner or later, at which point we'll move on.  But at least Xeloda isn't another total failure (yes, Ibrance and Letrozole, Afinitor and Aromasin, I am looking at you). And even if Xeloda does punk out sooner rather than later, I figure we'll still be dealing with growth from a better point then we've recently been at.  At least that's something.  And you never know, maybe Xeloda will just keep on doing this beautiful thing for a while and exceed expectations.  It could happen just that way.

For me, for today, I will celebrate this little victory. Tomorrow will bring what tomorrow will bring whether or not I dance and cheer tonight.  And especially after 2015, where this cancer is concerned I'm glad to finally have something to cheer. 

And I can finally stop holding my breath, stop waiting and wondering whether Xeloda is going to do anything at all.

Nice start, Xeloda, thank you.

A little better, a little motivation

Just a quick post this morning (getting ready for work and all) to say that with the weekend off, the sores are getting better and certainly more tolerable.  Thank goodness.

My diet has expanded beyond eggs and porridge and the pain is now situational rather than constant.  Such a relief!

I started back on the Afinitor Monday night (she said to do that when they were getting better rather than when they were gone).  So far still healing.  Fingers crossed that this continues!

Yesterday I also got back the results of my Ca27-29 tumor markers from my 2-weeks-on-Afinitor appointment and--surprise!--they were a nice steady 120!  That's basically the same as they were a little over a month ago when I stopped the Ibrance, had the 3 1/2 weeks off, and just 2 weeks of Afinitor under my belt.  I had expected them to go up with all of that and steady is always good, so I'm happy.  It may even make the mouth sores all worthwhile.

Hope it's the beginning of some good work from Afinitor!

Happy Wednesday, everyone!

Insurance fixes and more tumor markers

Yesterday was a good news day.  I hadn't realized the level of anxiety I was feeling until it was gone, but turns out the sense of relief was pretty darn strong.

First, I got written word from my medical insurance company that they will continue to cover the Ibrance and that their customer service contacted the pharmacy who had initially told me my medical wouldn't cover it and my Ibrance is in the pipe to be delivered for the day I need to restart.  That is really good news!

After calling them several times over the last 4 months and getting different stories each time ("No, it's not covered, talk to your drug insurance company."  "Yes, it's on the covered list but has to come from this one pharmacy."  "Who told you it was covered?  There's no list, who told you that? Well, if you say it's covered it can come from any specialty pharmacy because you don't have the drug benefit."), I sent a request for clarification through their written interface so this response was in writing. That's a whole lot better! 

"Who told you that?" is not what I need to hear when I'm calling the exact same number with the exact same company about the exact same insurance plan when I just happen to talk to a different customer service representative on that particular day.  But at least it's all set now and they did go to bat for me to make sure the pharmacy was completely on the same page, too, and verify that when the pharmacy insurance specialist said she'd worked it out, I wasn't going to get more, "Who told you that?" before my Ibrance arrived.

(And, yeah, I get it, I'm sure lots of customer service people hear all kinds of mixed up information and outright lies from people all the time.  It's just really hard when it's really important and you know you're not the one changing the story!)

Want even more good news?  How about this: my tumor marker numbers came back and they're still stable:

Scans trump tumor markers, but they're still meaningful, and pointing to the same stable-ish things the recent scans showed is a good sign.

Normal person levels are below 40, so at over 100 there's still a ways to go, but not getting worse is a good place to be right now.

Got to love some good news days to enjoy in these last weeks of summer!

Lighthouses, numbers, and upcoming scans

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

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

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

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

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

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

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

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

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

------

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

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

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

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

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

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

It was disappointment, for sure.

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

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

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

I'd know it anywhere.

I took this pic because I was there!

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

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

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

A small piece of good news

To go with all the uncertanty about Ibrance and my neutrophils, I did get a small piece of good news Tuesday (sorry I didn't get it online faster!)--I got back my tumor marker number from Friday's blood draw and (drumroll...) it's a little lower than it was a month ago!

It's been going up steadily at least since April, but the July number is back to where it was in May:

These things tend to fluctuate, so the scans in August and more tumor markers to (hopefully!) show a downward trend (and not just point) will be more meaningful.  But any trend has to start somewhere, right?

It may be a trend or it may be a blip, but at least it's a relief and I'm going to enjoy it!

Next up?  More blood tests to see if those neutrophils can be peer pressured into going the right way, too (come on, neutrophils, all the cool kids are trending the right way, what's the matter? won't your mommy let you....).

Numbers that may or may not mean something

M.C. Escher - No. 45 Angels and Devils

Have you ever watched those videos where an artist starts drawing something and at first you have no idea what it's supposed to be but at the end, with those final last strokes--presto!--suddenly it all comes together and turns into something?  They used to do a lot of those on Sesame Street with the voice-over kids guessing all the while at what it would finally turn out to be.

Health care is like that, too.   

Sometimes there's a lump or bump, maybe a random, fleeting pain.  You don't think that much of it at the time, but when it gets worse or other things happen, you get a diagnosis and in hindsight you can see how it all fit together.  Pieces of the whole.

I'm thinking of that because my tumor markers have gone up.

Long time readers and those of you also involved with cancer will know that tumor markers are something some cancer tumors give off into the blood.  They aren't present for everyone with breast cancer and they aren't 100% reliable even if they are present, but I have them and they seem to be pretty reliable, as verified by the CT and bone scans (more about tumor markers here).  And, basically, the more active the cancer, and the more cancer there is, the higher the tumor markers are.

And mine have gone up a lot since we last tested them in early April.

I'll admit, when I first saw the high number, higher than I've ever seen it before, I panicked.  Damn you, Ibrance, you stupid punk, not even worth a month? Really?!?

But then I started thinking.  And the real truth is that I have no idea what it means.

It's true, in general, high tumor markers are bad, but a few things I was thinking of:

1. Anti-hormonals like Faslodex and Letrozole (with or without Ibrance) can take a while to make a difference.  That's why if it's a crisis, they go for radiation or chemo, not anti-hormonals.  The problem for me is that I don't know what "a while" means here and I don't really know what's supposed to happen in the meantime.
2. I've read that sometimes anti-hormonals can cause tumor "flares" when you start taking them, where the cancer activity ramps up sharply as the tumor starves for estrogen, but after the flare, the anti-hormonals start to make a difference.  But it isn't true in all cases and I don't know if it's true at all when you switch from one type of anti-hormonal (like Faslodex, an estrogen receptor downregulator) to another kind (like Letrozole, an aromatase inhibitor).  So these numbers could be a sign of a flare indicating effectiveness.  Or they could be a sign that the cancer is just plain growing, indicating ineffectiveness.   Who can say?
3. I know what my tumor markers were in early-April and I know where they were 6 weeks later, but the thing is I have no idea what they were doing in the meantime.  For all we know, they could have gone up a lot higher between the two points.  For all we know, this newest high number could actually be a lovely, Ibrance and Letrozole led drop from whatever even higher point they were at in between. Really I have absolutely no idea.

There's a reason I don't practice medicine.  Clearly, I have no idea whatsoever what I'm doing.  And maybe some people really do have that Earth-Mother-Goddess ability to "know their bodies" and listen to some sort of soft, sweet voice of confident intuition telling them what's going on, allowing them the supernatural ability to "know their bodies best."  I think that would be really cool, but I wouldn't know for sure because I've never, ever had such a thing happen to me.  Ever.

But I did come up with one good thought of my very own (or maybe that's my soft, sweet voice of confident intuition finally weighing in, but probably not).  I don't practice medicine, but I know someone who does.

So I went back onto the new Electronic Medical Record site where I saw the high tumor marker number and sent a message to my oncologist asking her what, if anything, we were supposed to make of this number.

And she told me, basically, that it's just too soon to tell.  It's too soon to know if the drugs are working, too soon to know which piece of which picture this one is going to turn out to be.  She's not worried right now and it's no reason to switch drugs right now.  Because, right now, it's just too soon to know.

So this picture could end up being "Dawn of Utopia" or it could end up being "End of an Empire," but right now, no one but God himself can tell where this one's going.

The good news is it isn't bad news. The bad news is it isn't good news.  And beyond that we just need  to wait and see what kind of news it will turn out to be.

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!