The other shoe drops

Kinuko Y. Craft's divine Cinderella

My nice and relatively easy 20 month run on Xeloda is officially over. 

It was a good run but the drug has finally failed me--or my cancer has bested it, whichever--in a fairly dramatic way.

I had had a CT scheduled for later this month, but for 3 or 4 weeks before that I had developed a worsening cough and found myself more and more out of breath.  I was hoping it was a cold, a viral or bacterial infection, just something (anything) normal that normal people get and normal people get over.

It was not.

Last Monday I called the triage nurse in oncology.  I had been ok waiting 3 more weeks for my CT scan but things were getting worse and over the weekend it developed into a case where something like going upstairs made me feel like I was drowning.  Even little Pollyanna wannabe me know that was not good.  So, with my smart husband's increasingly strident suggestions, I called oncology the minute the office opened for the day (the triage line is 24-7 but that seemed a little like overkill since it wasn't an emergency and they would probably need to consult with my onc when she came in anyway) and told the triage nurse what was going on.

The triage nurse talked to my oncologist.  My oncologist moved my CT to first thing the following morning.

I had the CT, got a call from my oncologist, and went in the following day to see her and talk lungs and CTs.

During the previsit vitals the tech moved the pulse ox monitor from finger to finger.  She asked me if my fingers were always like that (fingernails of ghostly white), she mentioned my oxygen was low and my pulse was high.  I assured her that I was there to talk lungs so it might not be so surprising.  After bloodwork my onc had the tech walk me around with the pulse ox on to see how low it went (within reason, of course).

 My oncologist showed me my CT scans.  She showed me the plural effusions (liquid surrounding my lungs) and how on the right side it covered the length of my lung (mercifully less on the left) and how there was much haziness throughout both my lungs that hadn't been there in April.

That explained a few things.

She said the CT couldn't say if it was infection or spreading cancer.  It could also be heart failure.  She admitted me to the hospital to let pulmonary do their thing and get some heart scanning done.  They also gave me supplemental oxygen which is a wonderful thing.

Long story short, they diagnosed me with bilateral plural effusion, acute pulmonary failure with hypoxia, and something else I don't remember that meant there were things in my lungs.  They drained 750 ml fluid from my right lung and sent some for testing (the pulmonary fellow said that would make me feel better and it does a bit but, honestly, not enough to feel normal like I had hoped). They did a million other tests, put in a mainline to access my vein, drew a bunch of blood, took an EKG, an echo-cardiogram, and a follow-up lung X-ray.

And this is what they came up with:  it's not an infection of any kind, my heart is the same as it ever was, but the plural effusions show cancer and both lungs have "diffuse interstitial infiltrates seen throughout both lungs more pronounced at the lung bases" aka cancer.

So, that's dramatic.

But my oncologist is no stranger to drama because she's an oncologist.  And so she has a plan.  On Monday, first thing AM, I'm going in to to the usual pre-visit testing, talk about the plan, and start right in on a combination IV chemo treatment.  They aren't even waiting to place a port; we are, apparently, going hardcore offensive against this cancer to try and clear out those darn lungs. 

I believe the plan is a drug called Gemzar combined with Taxol.  But I'll know more on Monday at my appointment before they give it to me. 

So this weekend I am taking it easy, monitoring my oxygen saturation, wondering how much longer I'll have hair.  And Monday, I'm back to my chair in the infusion suite and back to the wars. 

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.

Where's a free dishwasher when you need one?

Want to hear a very weird but absolutely true story?

My dishwasher has been slowly dying for months (that's not, by the way, the weird part.  unpleasant, but not weird).  The dishwasher wasn't that old but the racks (top and bottom) had already rusted to ruin a couple of years ago.  We'd bought replacement racks, foolishly thinking that was a wise decision, and those, too, had rusted almost to ruin, yet again.  And the ruin didn't limit itself to just the racks, either--nope, other rust spots have been showing up on the washer itself.  About a week ago it flaked off the paint to show a nice quarter-sized spot of rusted through area and started leaking through said spot on the door. I caulked up that spot as a (literal) stopgap measure and we started looking at the options and prices of new dishwashers.

We'd hoped to have a little time left to get our ducks in order, but last Monday, it was pretty undeniable, our dishwasher was not only rusting apart, but also was now not even doing even a minimally acceptable job of cleaning--which, when you think about it, was the only job we were even asking the poor, rusting, limping appliance to do.  It was time to call it what it was: a kind of expensive and not particularly good looking drying rack for our newly remembered handwashing ways.

Handwashing isn't all bad. It gave me a chance to remember my youth.  And my grandmother who never owned a dishwasher.  And it was an interesting thought exercise but also a little sad to try and remember whether it was my grandmother or my home ec teacher who insisted that silverware and glasses should be washed before dishes and then pots (I never did figure out who it was, which, honestly, bothers me a lot because it's not like the two had equal impact on my life so how come I can't remember?).

But handwashing isn't fun.

But, here's the really weirdly cool part.  As I was leaving the office for lunch the next day, I saw it, this amazing miracle of a thing: in the foyer of the office building was a dishwasher just sitting there hanging out on a large sheet of cardboard with a sign that read:

FREE working dishwasher

As crazy as it sounds, I swear this really happened!

One of the downstairs offices had been renovating, which I knew because there were boxes in the lobby for a week, followed by cabinets parts sitting in the hallway, followed by more parts and a used office-like pieces.  But a dishwasher?  Our office doesn't have one and I honestly can't remember that I've ever worked in a place that did.  What are the odds, and less than 24 hours after we realized we couldn't use ours anymore?

So yeah, I put a nice addition to the note thanking them and telling them we'd pick it up that afternoon--didn't want to risk the awesome thing disappearing, especially not to a "guess no one wants it" dumpster.  It actually took a day while we arranged to borrow my brother- and sister-in-law's van (thanks, J and J!) since it wouldn't fit in a car (we tried) and last night, a mere 3 days after we started handwashing, I bought a new $12 drain hose and installed this thing (installation manuals and YouTube are wonderful things), and--get this!--ran a load of dishes.  Three days.

It's not new, probably about 5 years old, judging from the model number, but it works beautifully, and has neither rust nor leaks.  It's also the right size for the space and even the same white finish to match our fridge and oven.  Honestly, it's weirdly perfect.

Looks good, right?

 I just keep shaking my head.  I mean, what are the odds?  Just what we needed, perfect, free, and right there the very next day.  I've never seen a free working dishwasher hanging out in a hallway before, not in that office and not any other hallway that I can remember.  I know I have stage IV cancer and everything, but I still feel like I must be the luckiest person EVER.  What a crazy blessing. 

Do I believe in miracles?  Theoretically I'd say yes, but happening to me, if I'm honest, no, I didn't really believe miracles on that scale can happen in my own life.  It's like they're nice for other people, but this is me we're talking about here.  I generally feel more like a "make it happen" kind of gal than the "charmed life" type.*

But maybe I need to rethink that a little bit.

Does a free dishwasher mean anything at all about doing better than average with metastatic cancer?  Well, no, not really.

I know that.

But, on the other hand, which of us really knows what treatments will work for how long and what new therapies might come down the pike?  Who knows what the future holds?

I know my cancer odds aren't excellent.  My odds are actually pretty damn crappy.  But who knows? I could be one of the lucky ones who pull this thing out for a long while.  I mean, stranger things have happened.  Like this dishwasher, for example.



*Just to clarify, since my husband read this differently than I intended, so he's probably not alone, I don't mean my life isn't great, because it is and full of blessings--I'm just trying to say that we have to work for things, usually anyway, rather than just putting out our hands and watching them fill with diamonds.
-----------------------------------

(Also, I went for my monthly oncology appointment today, white blood cells are low but acceptable so no need to take extra time off of Xeloda, plus my liver numbers are back to normal again which is great--guess that's kind of par for the course this week!)

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!

My life as a spoiled toddler

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

It's been a while, hasn't it? 

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

Real mature of me, right?

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

They weren't.

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

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

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

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

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

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

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

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

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

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

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

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