Take a Breath

Last time on “We Love Today,” 4 weeks ago ~

(This part in italics is like the highlight clips of a previous episode, shown prior to a new episode of your favorite TV show.)

You learned that in late January, Cam first had a liter of fluid, and then ten days later, 3/4 liter of fluid "tapped" from his lung cavity. 

I gave you the assignment to look at a liter bottle of fluid at the grocery store and concede that a wife had a right to get a bit short of breath over it.

Lab results inconclusively deemed that the fluids contained some "atypical mesothelial cells," which is disconcerting because that's how his appendix tissue was initially characterized last July.

But unlike appendix tissue, fluid can’t be further classified.

It’s further disconcerting because one tumor removed in December was up in his diaphragm, and the hole that replaced the tumor became the chamber opening for cycling in heated chemo. The heated chemo was funneled through both his chest and abdominal cavities – a rare “bonus” for a peritoneal meso patient.

I ended that post by telling you that we were off to the hospital to get his 4-week lung check-up.

And I have completely left you hanging about the results for a month.

Not very nice of me.

Not trying to not be nice.

Trying to take a breath.

What did the March 5th x-ray and doctor visit reveal?

As of March 5, the amount of fluid in Cam's lung cavity had not changed in four weeks. Maybe it was a titch less. Dr. Lung Oncologist said that it was around 200-300cc.

Dr. Lung Oncologist said that he'd see us in a couple of months (May 1) for another x-ray.

Watch and wait.

And take a breath.

Watch and wait, my ass.

Fresh air was waiting for us, and we inhaled the opportunity to learn and fraternize at the annual conference for the Mesothelioma Applied Research Foundation on March 7 and 8. Someone generously made it possible for us to fly out and attend.

I’ll share more about the conference later – you’ll want to hear – but it was exactly what we needed: doctors, researches, fundraisers, bereaved, patients/survivors; all breathing the same air.

The head of the foundation is remarkably accessible, and when I presented our fluid concern to her, she whipped out her phone and texted a doctor who’d presented earlier in the day who was already en route back to New York.

“He’ll probably call you over the weekend. He lives and breathes his work.” It was Friday afternoon.

“I love those kinds of doctors.”

And by Saturday night, I had a call from him. It was awhile before we actually connected with all the details, but according to his email ~

·      He’s concerned, like I am.

·      He’s glad Cam’s off dialysis, like we all are.

·      He says it’s good that the fluid does not require continual tapping, which is obvious.

·      He says that Cam should have a CT scan of the lungs to establish a baseline for future comparison, which I’ll have to remind him can only be done without contrast dye, per the kidneys’ sensitivity. Unless it’s life and death, like it was at Wake Forest.

·      He agrees with our L.A. lung oncologist that Cam’s kidneys could not take chemo right now if it were needed for meso.

·      He told us to have Cam’s tumors (the ones removed in December) tested for an EGFR mutation, which he says has presented in some peritoneal meso cases. (Dr. Fuchs and any other doctors reading, do blow some strong cerebral winds my way, as we need to research what this advice means).

So.

Another breath.

Have you ever had a reality that felt sudden and foreign? You weren’t sure what to make of it. And you just blinked and stared a lot, literally and metaphorically? For weeks?

And more weeks.

That’s me with this fluid thing.

See, the dialysis was awful for Cam, but we hoped from the outset that there would be an end. Two or three months, we were told, and hopefully the kidneys will again be pumping and filtering, at least enough to get by.

But meso . . .

Another breath.

It’s like we’re at the edge of a cliff in still, chill air, knowing that there is no choice for us but to go over the edge.

But I just can’t tell – I just can’t tell because there isn’t enough information – do we have proper parachutes?

Or do we stand at the edge with tattered ribbons flapping from our backs?

That repeated image was what came to me last fall, when I tried to articulate what our ambiguities felt like: we had a diagnosis, but initially, no resource except for the internet, with its “average-ten-months-survival-after-diagnosis” knock-the-wind-out-of-you introduction.

And, oh, the uncertainty in those early weeks and months: was Cam like the averages? Not at all like them? Do we have parachutes for this ride, or will we be grabbing at air?

I’m not saying that I feel like we’re back where we were last summer and fall. Certainly we’re not. For one thing, we’re armed with much more information.

But there is a similarity in the “what is this that we’re dealing with?” circumstance. And the “do we take their ‘watch and wait’ advice, or keep hunting?” question that nags at us.

This obscure cancer put us on a cliff’s precipice, a cliff with nose-bleed thin air. And there’s no not going over the cliff.

But will the leap be terrifying, or will we glide to earth below like cartoon cherubim?

Chutes or frayed ribbons?

Well, Krisha, going into the HIPEC, did you end up having chutes?

Yes.

I can’t deny that we did. God ran out to us, and he flanked us with angels every time the wind whipped and threatened.

And now I’m tripped up in my own metaphor. Are we still on that same parachute ride, finishing it out? Or are we on a cliff again?

Dunno.

“Dunno” is too much the essence of meso.

So far.

I do know one thing for certain about the cliff image. It’s evolved from last fall.

Take another breath.

We’re standing there together. At the edge.

But now, we breathe the chill, still air thankfully.

And the entire focus of the image is his right hand, my left hand.

Fused together.