I Love You

There’s a hallowed out feeling with CID (chemo induced diarrhea) that opens spaces for the spectacular —  copious amounts of luxurious food, heart bursting fits of laughter, grief filled tears.

Echos  of my mother’s recent death and shadows of my own mortality bounce and blow in sunlight.

He’s waiting for it.

As we walk through the Marymoor Dog Park with our chocolate lab,  our conversation is a bit small talkish.

By the time we’re on the road to see our son’s Math Olympiad awards assembly, we’re a bit snappish.   Aggressive even in our silent retorts to missed attempts at humor.

We both know how I can storm.   The emotional front settles in and I look for something material to hang it on.    His little “teasing” remarks about the humanities and admiration for the sciences pop off easily in our weekend of robotics and math.

But I’m feeling less visible.  No longer “working” in the humanities, I feel subdued, removed from the conversation.    Ashamed, even, at my endless patter about contractors, kitchen paint,  laundry and neighborhood politics.

I’m grateful for this CID space.  This open, light-headed emptiness.   Here the small fleeting image of the silenced wife can’t hold its pursed line.  It waves out of control in a trickle of tears after dinner.

“I’m really emotional this weekend, but you said you want me to share when I’m upset, but you need to know that I’m emotional so what I say will sound much more intense than I mean.  It won’t represent what I really think.”

“OK,”  he says.

He’s waiting patiently.

It becomes clear that he’s been waiting patiently.   Understanding the undesired focus on mortality the new tumor markers bring.  Watching the approach of Mother’s Day.

He’s different without my voice, I tell him.  He doesn’t respect what my research brings to the world.  His demeaning attitude will dissuade our son from following his heart in college.  His scientific male arrogance, unchecked by me, will erase everything I am and have been.

I won’t matter.

What I learned and studied and contributed won’t matter.

You’ll make it hard for the kids to grow the parts of them that would be me.

You’ll forget me.

Tears.

Oh, he says.

He laughs.

The love in his face fills the room.  It warms those wide-open emotional spaces inside of me.

“Oh,” he says.

His face somehow captures his understanding – the angles and corners, curves and edges, layers and hues, of my entire being.

“How could that ever happen?”

“I love you.”

The truth he speaks swirls up.

And we laugh.

 

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Clever Cancer

A quick review. We left our heroine in a honeymoon period, after ditching a session of her new chemo, Xeloda, due to, well, basically, extreme internal body burning.  She had some fun; she went on some amazing trips, received some beloved visitors and ate a LOT of really good food while on break from that harsh dose.

This last week, however, we have some interesting results. Our heroine’s liver is ROCKIN’ IT! Her liver hasn’t tested this “normal” since November 2015.

But…while her overall tumor markers went down initially on the super high dose of Xeloda that burned her insides, those cancer tumor markers are now going straight up.

Now if you were to ask her, she would say that she is feeling GREAT. There’s a bit of very minor bony aches and pains here and there — and a very weird memory issue she calls a breakdown of her “geographical reasoning,” but in all, she is feeling good.

We’ll run the Xeloda dose back up a bit, get her a PET scan, keep watching those tumor markers and see what’s going on in or next oncology appointment.

For those of you who like details about cancer treatment, though, here’s a very detailed analysis of what I think is going here.

Let’s start with the liver enzyme chart.

IMG_1948

There are three liver enzymes being charted here.  The top line is ALK PTASE.  The second to the top line is AST(GOT) and the third to the top line is ALT.   The straight lines mark the top of the range for NORMAL for each of these.

Notice the red box far to the left.  All of the enzymes are below their respective “normal” lines.   This is when my tumor marker started going up with Taxol after my return from my 6-week break for a trip to France.

The second red box is when we shift chemos from Taxol to Navelbine.    Notice how the liver enzyme issues start getting worse?    Up until this point, these increases and shifts in liver enzymes match the tumor marker data, which is also going up in a similar way in response to the same events.

Look at the tumor marker chart below.  Between the two red boxes you can see this period I’m talking about, when both tumor markers and liver enzymes were going up. This is the Navelbine experiment.

Apparently my cancer thinks Navelbine is candy.

IMG_1943

Here is where things get really COOL, though.

See that little jig in the second box?  That’s the first dose of Xeloda and the first session of Perjeta and Herceptin.

Perjeta and Herceptin are targeted therapies that work only with HER2+ cancers.  My liver biopsy after Navelbine showed that my cancer had CHANGED to HER2+    (See dancing parrot blog post for more information).

So at that little jig, where we back off of Xeloda, my tumor markers go UP and UP and UP.  But my liver functions continue to go DOWN.  See?  We stopped the chemo, Xeloda, which attacks all cancer, but continued the Perjeta and Herceptin, which only works on HER2+ cancer.

And I’m feeling BETTER AND BETTER, with a few bony aches and pains here and there.

So I think my cancer in my liver changed to HER2+ and my bone mets have just stayed their simple selves.

This is a GOOD THING.  Bone mets don’t kill you.  Liver mets do.

Did your thoughts and prayers change my liver cancer?  Did taking a break from chemo in France for six weeks give those aggressive HER2+ cells time to grow and push out the weaker HER2- cancer cells?

Whatever it is, I am thinking it’s good.  We can zap bone mets.   The liver is rather crucial to, uhhh, living.  OMG.  That’s kind of funny.  The liver allows us to be Live-ers…ha ha.

OK.  We won’t know until we know.

The Xeloda at the lower dose is not burning my lips, feet, palms and insides…but I do have some major D.  I’m rockin’ the diapers and taking my little “cure” of two Lomotil and one oxycodone after each “event.”

If Xeloda turns out to be marginally effective, I would argue for a return to Taxol, despite how happy everyone is with my hair.  Me included.  Body hair makes sex SO MUCH MORE FUN.  Not that you needed to know that.  Taxol didn’t fatigue me or require adult diapers.

But maybe the Taxol just wasn’t working with the HER2+ new stuff in my liver but working well on the bones.

We’ll see.