Crazy Love

When I had sophomores as part of my teaching assignment, Macbeth was required reading. It's no secret that Cam and I love Shakespeare—a love that most people likewise share once they get to know the Bard's language and poetry.

I think my sister, Marcie, sparked my love for theater when I was about six. A few years my senior, Marcie was old enough to see the dazzling traveling production of Saturday's Warrior, and as soon as she got home, she told me every incredible detail as only a child can—bales of hay on the stage like this (oooh), the lighting like this (ahhh), the smart girl said this, he said that, and so on. I was mesmerized.

And then, when Marcie was in high school, she came home with this book that she said was soooo good. "It's called Macbeth," she told me, with excitement beaming from her blue eyes. The cover didn't give any clues I could decipher (just an agonized man in weird clothes), but I figured whoever this Macbeth was, she must have a juicy story. (Beth is obviously a girl's name, and also Marcie's middle name. You see my mistake.)

I grew up to teach sophomores the "cursed" play whose title many actors won't even let you say in a theater for fear someone in the cast will end up in the hospital (it's custom to call it "the Scottish play" to avoid near-death experiences, and yes, there's an actual history of deaths and many accidents over its centuries of performance).

I always divulged to sophomores my secret desire to put my stage training to use one day as Lady Macbeth.

"Wouldn't I be fabulous?" I'd say, making my eyes wide and wild.

Acknowledging my less-than-edgy look, I'd defend my self-casting choice: "Really—you wouldn't expect so much power-tripping and evil all of a sudden from this face, right? It'd be perfect!"

What could they do? Nod.

Sure, Mrs. Deaver. Just like someday you'll perform Shakespeare with Kenneth Branagh. When's this class over? Oh—woops. Forgot that I'm a teenager; I know end-of-class times better than I know my full name. Uh, this class is almost over, Deaver. Leave la-la land and get back to trying to entertain me into learning.

I still think I could do great things with Lady Macbeth. Her husband is making it up the ranks, he has an unsolicited conversation with three mystics who know the future, and BANG! An upstanding couple is on a path to self-created doom once Lady Macbeth glimpses the power that will certainly be theirs.

And then she sleepwalks, trying to rub away invisible spots on her hands. She dissolves into ma-a-a-ad-ness.

It's awesome. And every little drama queen's dream part. (And every grown male's nightmare, Cam would say to the insane wife part.)

Is there a point here? you're wondering. I thought that I was going to get an update on Cam's blood numbers so that we can all stop worrying he'll suddenly drop dead if he's force-fed a potassium-laden banana.

I'm getting there, reader. It's all connected. You just have to be patient and enjoy the ride.

And that's the point!

You have to be patient.

And enjoy the ride.

Something random made me think of Macbeth a couple of days ago when, once again, I just wanted to KNOW—

What exactly is Cam's blood potassium level? Is the nap he's taking normal, or is it a fatigue warning sign? (Of COURSE I Googled whether there truly are no warning signs for high potassium-induced death in kidney patients . . . and oh, great, the ever-easy-to-spot-as-a-warning-sign "FATIGUE". My worries are over . . .)

I just wanted to KNOW, Potassium is just fine, all signs indicate that if he continues to watch his diet, including avoiding the nefarious orange juice (it's the real potassium culprit according to Dr. Nephrologist), he won't drop dead between now and his next blood check.

Perfect! I'll stop worrying and wanting to know . . .

. . . until I start to anticipate the next doctor visit we have with the next specialist in about a week.

Huh.

I think there's a problem here.

And this is where Shakespeare's talent to tell a good story comes in. In Macbeth, a decent couple has a common human desire fulfilled: they learn the future.

And it destroys them.

Not only do Macbeth and Lady Macbeth recklessly force-create that future; it's more than that . . . it's as though they don't know how to even consider other options, or other ways that their certain future could come to pass without forcing its existence through murder. (Okay, so their situation is extreme, but it still serves my point.)

BECAUSE they know the future, everything unravels for the Macbeths. Like I said, it's as though they lose the power of choice because they're so driven by the exhilarating thought of their certain future.

My religion (LDS church) has lingo for that "power to choose"; we call it agency. To us, agency is a God-given gift. We use agency to stick one foot in front of the other in the direction of good, or we don't. In fact, we LDS view eternity kinda this way: humans are like kids sent off to college. God sends His children to earth, and humans show God that they'll make good choices on their own, with their agency. Humans just don't remember the "pre-college" years because then they wouldn't need faith. It would be too easy to choose; like the Macbeths knowing the future, it would inadvertently take away the beauty and power of agency.

And that's what life is, uncertainty and choices. To the epic poet Dante, what makes humanity beautiful is that God gave us both intellect—ability to reason—and will, the ability to act on reason; to choose.

Ultimately, in Dante's picture of hell (Inferno), humans actually become what they repeatedly embrace in life. For those in Dante's fictional hell, God can't claim them as His own because they willfully chose a love of something else in life. He has to let them continue to be what they embraced in mortality.

And choosing to not take sides, to fence-sit and not use the precious reason and will at all? Because it's scary, because we think we'll get it wrong or fail, because we don't feel like it, because of whatever—in Dante's concept of eternity, that has terrible consequences as well.

In fact, in one of the circles of Dante's hell, he has fortune/future-tellers. If I understand Dante, he implies that not only do the future-tellers attempt to play God, they defy the very concept upon which God set up human life: dependent upon individual reasoning to govern will through uncertainties.

I think one reason why Shakespeare's and Dante's works survive the centuries is not just because of the astonishing complex and astute ways they use language, but because they're able to create stories that resonate with our deepest human yearnings. And within those stories, they show us some wisdom about how to manage the frustrations of being human.

So Macbeth and The Divine Comedy say to me in this moment, "Krisha, you don't need all the answers right now." (And believe me, there are a lot of questions—beyond rare cancers and kidney failure—that I really want answers to in my life. Where the hell are our cute kids? would just be the start of a long list of things I'd like answers to. Now.)

But knowing how things work out, though we think it would give us peace of mind, would ultimately remove the beauty of what makes us human. What makes us divinely human is wrestling with the unknown and putting one foot in front of the other every day anyway in the direction of good—whatever good we've wrestled within ourselves to find and to find in others.

So what are Cam's numbers?

I would have told you from the start if I'd known. But I wrote all this during another day of not knowing.

Dr. Nephrologist just returned Cam's call. 

Cam tried to withhold information about the call and use it as leverage to get a backrub.

But he's not truly manipulative, so he stopped the playing around and told me.

And I thanked God. 

And then I held Cam really tight for a really, really long time. 

Actually, God had to get thanks while I held Cam tight (I don't think either of them minded). And then I held him (Cam) for a really long time after.

"Sometimes," I breathed into his ear, "I think that nothing bad can happen to you if I just keep holding onto you really tight." 

"You might squeeze the air out of me," I heard a muffled voice say that sounded vaguely like my husband's.

I squeezed harder. 

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And if you really want numbers—

They're slightly improved over five weeks ago, still higher than we hoped for, but not imminently dangerous.

If the potassium rises over the next few weeks, we'll make Cam get back on the sandy-syrupy, potassium-eliminating concoction that he stopped taking a week or so ago, on a "hunch" that he'd be fine.

And in the meantime, I'll keep watch like a crazy lady on the fruits and vegetables he eats, along with that salumi appetizer we had last night (phosphorous is also a kidney patient hazard), and I'll hope my squeezes let him know that my kooky protectiveness comes from crazy love. 

That's what I KNOW today.

Absurd Conversations, Episode 2: or "It's Not Time To Worry Yet"

Cam doesn’t know that he’s extraordinary.

As you hopefully know, Cam has not had dialysis since the end of January. Yesterday our dentist asked me how dialysis had been for Cam.

“Awful. I could always tell that he was miserable the whole time, but he never complained.”

Our dentist almost teetered off his rolling chair because he pushed away from my exam recliner so fast. "Really?" he exclaimed. "He never complained?"

“Really. Never.”

Dr. Dentist went on and on about how he couldn’t believe it. How extraordinary.

Now, don’t go getting the idea that Cam is perfect. I worry that that’s the picture that I paint for you. In reality, he's far from it (he made me write that), especially when dealing with stalled electronics, stalled traffic or frustrating customer service, but I choose to write about the many things that make him close to perfect.

So today we schlepped back to the nephrologist. (That’s fancy for “kidney doctor” – nephrologist, that is. Schlepped is Yiddish or Jewish or Angeleno for “drove the really long way that wouldn’t really be long if there were fewer cars on the road and a better mass-transit system.")

Anyway, we schlepped to Dr. Nephrologist for the first time in five weeks because the logistics of a recent job for Cam had prevented him from having his blood checked.

I’ve been eager for this check-up. See, Cam had been having his blood checked at least once a week before – sometimes every two or three days – so going five weeks felt like a dangerously long time to me.

Here’s why –

I now present Absurd Conversations, Episode 2: Kidneys and Potassium.

Please note that this ACTUAL conversation took place in January, not recently.

Nephrologist: Cam, I had you come in because yesterday’s blood test showed your potassium is high. Since elevated potassium in a kidney patient puts you at risk for a cardiac episode, I want to do an EKG.

He does the EKG. The EKG comes back normal.

Cam: How will I know if my potassium gets too high? What kind of signs or symptoms will I have?

Nephrologist:  Probably none. It'll just kill you.

I wish you could have actually heard the delivery of that last line, because there wasn’t even a beat between Cam’s question and the answer. Actors and comedians clean house with timing like that.

We laugh about that line a lot . . . now.

I know Dr. Nephrologist hadn’t meant to be shocking because shortly thereafter, he repeatedly checked that I understood that Cam’s EKG looked fine. Had he read some worry or bewilderment in my face? Nah...

Dr. Nephrologist goes on to explain that because of Cam’s borderline kidney function, he’d be perfectly justified in requiring Cam to continue dialysis three times a week, IF Cam weren’t so responsive about doctor’s orders.

BUT, since Cam IS so responsive, they would just watch his blood levels carefully . . . so, kids, there’s something to be said for being good at following directions after all.

Here’s the story Dr. Nephrologist then shared to make his point about following a nephrologist’s directions:

A few months prior, Dr. Nephrologist had seen a patient who didn’t live locally. He tells the patient, an older man, that when he returns home, he must see a local doctor for treatment. The man goes on his way.

Dr. Nephrologist has his office manager call the man's family repeatedly: Has he gotten treatment? Has he gotten treatment? He hasn’t. He hasn’t.

Again, has he gotten treatment?

No. He’s dead.

The End.

I did not make up any of the preceding Absurd Conversation from January. I am not that creative. Or that morbid.

Do you see why I was eager for today’s check-up?

Even Dr. Nephrologist was eager and excited to see Cam after five weeks. He took off his gloves and held out his arms and said, “Give a hug.” Picture Woody Allen, just a lot sweeter, with curly hair, and insanely smart about kidneys. It was adorable.

So how did it go? I don’t know. Cam will call and get today’s bloodwork results late tonight, just like Dr. Nephrologist said to. Yes, really. Insanely devoted doctor.

Why do I worry? Cam hasn’t dropped dead yet. And yes, Dr. Nephrologist sufficiently put that fear in me. Hello, did you read the preceding Absurd Conversation?

While schlepping to Dr. Nephrologist this morning, I realized that Cam doesn’t realize that he’s extraordinary with his cheerful "let's think about only what we know is reality".

I think I’ve had times when I’ve been really good at being positive, but other times when I struggle.

So during our schlep this morning, I made a request: “Just give me credit for handling this well, please. You went weeks without your blood being tested.” With Dr. Nephrologist’s consent, Cam always adds.

I made the request because I wanted to know that it’s okay that I’m not extraordinary. That I worry. But that surely someone who knows me as well as Cam does understands that I could have worried a lot more if I hadn’t been making an effort not to worry.

If you worry about Cam, too (which you keep in check, I’m sure), please feel free to bug me by tomorrow if I haven’t given you an update about his blood results. I don’t want to leave you hanging for a month like I did about the lungs.

Oh, speaking of lungs, he got a chest x-ray today, too. Dr. Nephrologist said the lungs sounded good, so surely all is well on that front, too!

Yup. Surely all is well.

It’s not time to worry yet.*

*Can’t take credit for such a great line. It’s from the wise father, Atticus Finch, in To Kill a Mockingbird by Harper Lee, that classic that when I read it as an adult made me exclaim, “I read this in high school? It’s incredible!”

Hope. And Keep Asking.

Gratitude.

And love.

Courage.

And HOPE.

The purpose of this blog is to grow these things in the people who originate the posts and the people who read the posts.

I just needed some time off to remind myself of that.

Oh, and of course, it’s intended to keep you updated on the well-being of the fabulous Mr. Cam Deaver.

But if you could be with him day to day from the beginning of his obscure cancer and subsequent adventures (which only I’ve been privileged enough to do), then you would know that his words, his actions, his presence have always and continue to invoke gratitude. Love. Courage. And HOPE.

So what’s the update on the red-headed man with the charming smile who we all love?

He’s doing sooo much better. You’d be thrilled to see him.

He’s working on a film project for our church, which has provided us a much, much needed change of scenery. By displanting ourselves, we can almost believe we’re in a place where cancer, kidney failure, lung fluid, and piles of medical paperwork don’t even exist.

Almost. (We’re not getting high, after all.) Just a change of scenery and some much-loved work.

Yes, he loves the type of work he’s doing on this current film project, and I believe that being able to do it has been the perfect next step in his healing process. God is merciful, friends.

And by changing things up, hopefully we’ve both been able to take a breath. Build some strength. Some stamina. Some resistance. Some perspective. 

Because in two weeks, we’ll be running the gamut of doctors’ visits again, and we’ll need all that stuff and more.

But we can do it! With some laughs and big ol’ smiles, lotsa hugs and prayers, it’ll all be fine. Things will work out.

I can’t think of a single time that I’ve asked a friend or acquaintance for a needed hug and been refused. There’s some power there, right? Power in the asking. Power to receive if we will ask.

Yeah, monsters, you’re not so tough. Bad dreams, you’re just subconscious stirrings. Haunts, you’re just fears that I’ll keep slaughtering.

We’re going to be just fine.

Oh – but don’t think for a minute that you’re off the hook with reading medical adventures. I already have an “Absurd Conversation Series” installment ready to post. Hopefully this one will actually make you laugh, though.

Hopefully.

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.

Absurd Conversations, Lungs

Overall, Cam's doing much better in the last couple of weeks—getting past the nausea, eating a more varied diet, regaining some strength and stamina. And we're profoundly grateful for your unending love and support.

But February certainly had some Absurd Conversations that had my head spinning . . .

Absurd Conversation 1
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Lung Oncologist: (reading through Cam's recent medical history) This sounds like a nightmare.

Us: [Nothing.]

Lung Oncologist: So the fluid that was taken out of your lung cavity recently . . . we have to assume those were probably malignant cells.

15 minutes of discussion later . . .

Lung Oncologist: If it is malignant, we would need tissue—a biopsy—to confirm it. I can't put you through that surgery right now. [He describes minimally three days in the hospital for a surgery that would include an apparatus to separate ribs for obtaining a tissue sample.] 

He continues, And if it is malignant, we wouldn't be able to treat it anyway. There just isn't any kind of chemotherapy that I can give you because of your kidney damage.

And another 15 minutes of discussion later . . .

Lung Oncologist: This fluid—I think it's probably okay.

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Krisha's Take on Absurd Conversation 1

How can the doctor go from what he said at the beginning, to what he said at the end of the appointment?! I wrote it all down in my notes! Frustrated comment, frustrated comment.

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Cam's Take on Absurd Conversation 1

The doctor's figuring things out as he goes, too. He might need to talk through things to get to his conclusions.

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Filling in the Medical Gaps for Absurd Conversation 1

In mid-January, Cam had almost a liter of fluid removed from his lung cavity. The next time you're at the store, look at a one-liter water bottle. It's enough fluid to worry a wife.

Ten days after having the first liter removed, he had a follow-up chest x-ray, which revealed that the fluid had returned. 

So, in late January, while he was in the UCLA hospital for infection detection, he had another 3/4 of a liter of fluid "tapped."  That means "taken out via a long needle that goes into his back and then into his lung cavity."

What is most disconcerting about the fluid: the lab results for the fluid came back as "atypical mesothelial cells."

Now, the lab results did not say "mesotheliOMA" (good), but they did say EXACTLY the same thing that initial lab results had said about his appendix last June. And we know where that led. Are you starting to see why I've been freaked out?

So how did doctors determine last June that it was mesothelioma? 

The lab here at Cedars-Sinai Medical Center detected "atypical mesothelial cells" in his appendix biopsy. The Cedars lab sent the appendix slides to an expert lab in Canada. The Canadian lab determined it was mesothelioma. 

And as we moved along in the process of finding a doctor to treat Cam, a few other expert labs in the U.S. confirmed the diagnosis.

Why can't doctors just send the fluid from his lungs to an expert lab again?

Good question. I asked the same thing. To lots of doctors. I even asked the expert in Canada who first diagnosed Cam's cancer from a tissue slide. 

Apparently, the problem is that with his appendix, there was tissue to examine. Now there's just fluid. Supposedly, there aren't enough cells in fluid to determine what's going on.

What else would cause the fluid?

Perhaps just a reactive process to all the stuff that had been done to Cam's body. 

After all, he had a lot of surgical "stripping" and "work" done on his diaphragm. And his surgeon pumped the heated chemo in through the HOLE he'd created in Cam's diaphragm. 

Yes, not only did Cam get the hot chemo wash in his abdomen—as we'd expected—he ALSO got it in his lung cavity. ("No extra charge," Dr. Levine joked.)

By the way, mesothelioma is usually in the lungs. Cam's, of course, is in the peritoneum (abdomen lining). Peritoneal mesothelioma accounts for only 10% of all mesothelioma cases each year—which makes for about 200 cases of peritoneal meso annually. Frickin-frackin-rare bugger. Because meso is rare, there aren't good treatments, the way there are for common cancers.

But it had never occurred to me in all our months of research that peritoneal mesothelioma (abdomen) could become pleural mesothelioma (lung). I thought they were different "types" entirely—I was worried about what we were dealing with, not what else it could become. But of course, since the disease travels through its own fluid, one can lead to the other.

Anyway, because Dr. Levine did the surgical work to the diaphragm and put the hot chemo wash in the lung cavity as well as the abdominal cavity, it obviously makes my antennae twitch when there's mysterious fluid building up in the lung cavity. 

Because mesothelioma does love to make fluid and mucus, in addition to tumors. It's multi-talented like that.  

So what next?

Watch and Wait. 

As the expert in Canada told me, "If it's a reactive process, the fluid will clear up soon enough. If it's mesothelioma, unfortunately, it will show itself soon enough."

Cam has a follow-up appointment with the lung oncologist today (March 5). Cam will have another chest x-ray. It's been almost four weeks since his last chest x-ray, which revealed about 300 ml of fluid (about a cup and a half), but that's not enough fluid to go after. The risks of "tapping" that "small" amount of fluid outweigh the benefits. 

What are we praying for?

We're praying that today's x-ray shows NO FLUID in Cam's lung cavity. And that the blood labs show improvement for his kidneys.

Okay. Here we go  . . . off to the hospital—

I'm Stuck and Scared

"I'm stuck and I'm scared."

Something had set me off as we were setting out for a walk, and five minutes of gasping sobs were just slowing into hiccup-sobs when Cam passed me sunglasses, walked out into the sunlight, turned, and extended his hand across the threshold.  

We'd made it a block when I sob-sputtered those words. I go on, "I—I want to update your blog. I got a message from a friend of yours yesterday, and sh-she said that you've affected thousands of people. That's why I started the blog—because other people love you, and I'm the one here with you—" 

And the words gush out again because it soothes to free them: "But I'm stuck and scared. And I don't think I want to write that on a blog."

And then the beauty happens. The reassuring voice I love makes it past the tears. Miraculous to me, his words penetrate through mangling fears that have stymied my voice—both on a blog and in general—for a month: 

"I think it's just fine for a blog. I think it's even a great first line."

I'm so light, now that he's made fear look naked and weak. I'm so light in this miraculous moment, that I almost feel giggly as I realize the tableau we're making. "I feel like a toddler. I'm c-c-crying while I hold your hand and w-w-walk up the sidewalk."

Cam's voice smiles. "That's okay. At least you're not throwing a tantrum on the ground."

I still sound like an oxygen-deprived Muppet. "What if I did? What if I flopped to the ground and pounded my fists and stomped my feet and screamed that it's not fair?"

"That would be okay. Whatever you need to do is okay. The sidewalk's pretty nasty, but if that's what helps, who cares?"

Sharing to Say Thanks

OPEN INVITATION: I’m teaching a lesson for our church’s women’s organization tomorrow (Sunday, 2/17), and I’ll be talking about some of the experiences—and miracles—we’ve had in recent months.

Although it’s the women’s organization, EVERYONE IS WELCOME—any belief, either gender. It’s a simple class setting, so don’t worry about ties, dresses, participating, or proselyting. ;)

The church is at 10740 Ohio Ave, Los Angeles CA 90024. Ask anyone to point you to the Relief Society room (west end of the building) and make yourself comfortable. Time is 10:20 - 11:00 am.

CAM AND I WOULD LOVE TO SEE YOU!

Surprise Weekend Getaway

Dear Lovely People,

I appreciate your gracious patience. In the past five days I've been in the process of transitioning back to work, and semester grades were due last night, and 4 of my 5 classes are AP seniors, so, well -- do I really need to say anything more? If I do, you're one of those people under the illusion that all teachers are done at 3:30 and have summers off.

Wait. I'm still laughing. Hold on.  

Arhghh. Okay. Done.

Woops. Nope ------

Okay. 

You probably heard about the excitement: Cam and I left dialysis early Saturday evening for a spontaneous retreat to the UCLA Medical Center. Though it wasn't a scheduled trip, we've found the concierges at each hub of this destination to be pleasant. The excellent tour guides are warm and truly, carefully thoughtful in planning our itinerary each day. It's clear that they are considering Cam's best interests and --

Ah, man! This, this  . . . thing . . . my arm, pokey . . . look down . . . It's. A. Knob. A knob, I tell you! You know, like the kind that makes a reclining chair RECLINE! A knob of such kind as I was looking for at 3am after I'd finished every tot and tittle of grades so that first-semester, "I have to get into a good college!" dear-hearted high school seniors wouldn't panic by any stone unturned. A knob that I searched high and low for in the dark. Bleary eyed. Cross-eyed. Knob, you vile, hiding knob. The cricks in my neck and back and calves curse you for being on the inside instead of the outside of the recliner where the lever for the foot-elevation is. That settles it. I'm giving myself a present. I'm going back to the gift shop here at the resort and buying that geniusly titled book, You'd Better Not Die or I'll Kill You: A Caregiver's Survival Guide to Keeping You in Good Health and Good Spirits by Jane Heller. For sure Ms. Heller could have told me to plant in my sleepy subconscious the need to feel around the outside AND THE INSIDE of reclining chairs for accessing their reclining function at resorts like this. Wah, wah, wah. Somebody call the wahmbulance.

And if you can spot the teeny, tiny homage to Shakespeare's A Midsummer Night's Dream in that rant, do message me. It would be delightful to hear that someone found it.

So, being walk-ins without an appointment, we had to settle for accommodations in the Suite Emergencia of the resort, which is apparently much less desirable than the rest -- we don't actually know because we haven't yet caught a glimpse of the general resort rooms -- but we were fortunate that a quick get-to-know-you of charming Cam at check-in was all it took to be given a room almost immediately, despite the fact that the resort, including the Suite Emergencia, was over-booked. Cam is so grateful to all those who provide service -- always -- that he kept remarking over and over again how grateful he was to have a room with a door while so many other travelers were waiting hours and whole days and nights in the extraordinarily bright, noisy, frequently chaotic hallways just outside our room.

Intent on finding him better accommodations, last night the staff moved Cam to Gonda a la Observation Suite next door to the ER suite. Still not part of the main resort, and with a glass door that doesn't fully close, it's none the less positively tranquil here. Not a single traveler in the hall complaining. We're quite content. In fact, unlike our accommodations at the resort in Winston-Salem recently, there aren't even tour guides marching up and down halls. Just quiet concierges at a large island of desks outside our room, and the occasional visit from one of Cam's trip planners.

Interruption. "Code Gray, Code Gray. Ronald Regan UCLA Medical Center, 7 East."
Pardon me, I just had to include that because a calm, 20-something male voice has been cooing it over the resort loud speaker every thirty seconds for the past five minutes and it was appearing in front of my eyes anyway. It must mean that a very important party is going to happen soon and all the resort staff have to prepare. 

Our trip planners have all agreed that it's best that our visit ends this afternoon. Don't be sad for us; though they're so, so lovely here, we're actually quite ready to go home and are looking forward to it immensely.

Cam continues to be the ideal travel companion. Every destination is a pleasure that he receives gratefully, and I am learning from him all about how to be a thoughtful, informed traveler myself. Even when he's weary from traveling or he has a touch of this or that traveler's sickness, he still finds something cheerful about each unfavorable circumstance, or he'll remark how so many travelers have much less joyful journeys and that he is so, so fortunate during his trip. 

Your friend,

Krish

At the ER

The doctor has sent us to UCLA's ER. He wants Cam admitted to the hospital.

Cam spiked a fever (102.7), followed by insane chills, after what may or may not have been an allergic reaction to the dialysis filter this afternoon.

There was also lots of vomiting and a near faint during the 90 minutes of what was supposed to be a 3-and-a-half-hour dialysis session today. He's never vomited during dialysis before.

Dr. Copen, our nephrologist (kidney doctor) was making rounds at dialysis today -- thank goodness, since that only happens once a week. He thinks the fever suggests it's an infection. He says that the dialysis ports that go in the chest, like Cam's, can cause infection. (The other kind of port is in the arm, are permanent and for people whll be on dialysis permanently.)

Dr. Copen says they may end up removing the port in his chest at the hospital. And if they determine he has an infection, he'll of course need antibiotics.

The nurse checking him in here at the ER suggested it could be the flu. Cam said he'd wondered the same thing.

The other news Dr. Copen had for us is the result of lab tests for the fluid that was taken off Cam's lung last week: "atypical messothelial cells."  That's how Cam's original appendectomy pathology report was termed . . . the one that was eventually diagnosed as Mesothelioma after the pathologies were sent to expert labs. I asked Dr. Copen, don't we just need to send these "atypical mesothelial cells" to an expert lab -- like the Cedars lab did after the appendectomy -- to confirm if it's Mesothelioma? Dr. Copen says that the problem is that when they first found Cam's cancer, they had tissue (pathology); now they just have fluid cells. I guess it makes it harder and they would need to take tissue at some point, "perhaps."

Dr. Copen had Cam get another chest x-ray earlier this week, and it shows the lung has fluid on it again. Not as much fluid as last time before they drained it, but I saw the x-rays, and it looks like almost as much. Dr. Copen says they'll likely need to drain it.

We got settled into a room here at UCLA's ER pretty quickly. They've begun poking and prodding and taking x-rays, but not much else yet.
I suspect it will take all night to get him admitted to the hospital . . . and I have no idea how long the hospital stay will be. Your guess is as good as mine.

Thanks for prayers and positive thoughts.  Knowing that we have all you behind us makes ALL the difference.

Rare Afflictions

Until yesterday, I hadn't been able to focus on a screen for more than about five minutes. It took me hours to pick out an email or two around Christmas, and I've sent maybe a couple dozen messages since then. And as much as I've missed keeping up with you beautiful people, scrolling through Facebook made me a little queasy (the motion, not the content). Thank heavens for Krisha, who read me posts and jokes and comments every day for six weeks.

Today, however, I need to add to the narrative that Krisha has posted. She has discussed in part many unusual circumstances and complications that we've experienced over the last few months. But she hasn't written about the rare afflictions that consume my thoughts and weigh on my soul.

(This will be a quick single pass, because I'm only seven lines in and already my tummy wants ginger ale and my eyes are a bit swimmy, even with new reading glasses, so forgive the typos and melodrama and roughness that should probably get edited.)

I’ve been afflicted since my diagnosis in June with an ineffable calm and confidence that everything will be fine. I didn't ask for this feeling, and I've wondered many days why it was thrust on me, whether it was real, and when it would pass. Other people with cancer and serious illness don't get this—why should I? For six months, it never let up, growing finally into a distinct and profound sense of peace that undergoing this treatment was the right thing to do.

Krisha didn't have it until that day shortly before we left for North Carolina when we decided to spend some time meditating in our church's temple. Since the surgery I've had many days when the feeling abated and, normal at last, I wondered whether I'd ever feel well. But there was Krisha, now afflicted, reinfecting me every minute of every day and reminding me that all was indeed well.

Before the appendectomy that launched this circus, I was afflicted for many years more than most people with health and safety. No scooter accidents, no falls while rappelling, no chronic or devastating illness, no burdens of pregnancy, no major surgeries, no combat, hunger, poverty or serious threats to my physical well-being. For years, I've been deprived even of the exultant relief that follows a good vomit or the sense of invincibility brought on by the passing of a nasty cold or the pride inspired by the return of regular poops and pees after a period of interruption. And now, despite a couple rough months and some still-to-be-answered questions, I have a pretty good prognosis for many more years of solid health. What do I do with all that?

Every day for weeks now I’ve been plagued by kindness and generosity and miraculous interventions of strangers and kin who have made things easy, comfortable, bearable in tough moments, hopeful on dark days.

How many of you have ever been serenaded—just for you—with Christmas carols by dozens of young children and gotten a hundred hugs to send you on your way? How many of you have ever papered a wall with hand-drawn cards from those children and read their love and wishes dozens of times a day? (And enjoyed some crazy hallucinations when those drawings mixed with your pain meds?) Rare indeed.

How many of you in Los Angeles have had people offer—OFFER, with a smile!—to take you to LAX at 5:00 a.m. and pick you up at rush hour? Rarer still.

And then to be greeted by old friends and new strangers in an unfamiliar town, who joined with family to smother me daily with attention and care.

A mother who threatens the nurses that she'll go all Shirley-MacLaine-in-Terms-of-Endearment on them if they don't fix stuff—and gets a laugh and the attention needed. And a mother-in-law backing up the mother! Fearsome rare.

A brother who spent the best week of the holiday season fussing over my needs in the hospital and making my move to a recovery house possible, and even enjoyable.

Another brother and niece and nephew who drove five hours each way during those festive days to crowd my hospital room for forty-eight hours with cheer and drawings and hugs.

Siblings on both sides of the family who, it seems, have had nothing better to do than overwhelm me by calling, mailing cards and presents, writing messages, making arrangements, sending money, handling needs, spreading cheer and making mix CDs that I'm now addicted to. Too much to bear.

Friends who drive hours out their way to look in on my bloated, cranky, nauseated carcass, even for a few minutes, leaving me with an undeserved sense of love and connection to a big world of concern.

A relative stranger who shares my disease and my cure and offers her food, car, daily attention to my and my wife's every need, and constant assurance that, yes, I will one day feel better again.

On top of all that, I’ve been unable to avoid the constant barrage of meals, messages, calls, visits, gifts, encouragement, treats and the best mojo the universe can offer—prayers, meditations, fasting and who knows what other incantations and oblations from Mormons, Catholics, Baptists, Jews, Presbyterians, Episcopalians, New Agers, agnostics, atheists and various other persuasions on every continent.

And then last night I lost precious sleep, just couldn't get to bed, because I got sucked into hundreds of messages sent to me over the last weeks. I'm sure Krisha read them to me at some point, but, honestly, the two weeks after the surgery are pretty blurry. So I'm reading them all now, unable to stop and go to bed—and I’m still far from 100%, dammit—so the plague grows.

Finally, the intense affliction I haven't been able to shake for even a second, day or night, for all these months: my wife. I can't even sneak out for a 4 a.m. pee without hearing "What can I do for you?" whispered from under the cocoon of blankets on the other side of the bed. At my side in the hospital, at every appointment and treatment, chewing out surgeons and nurses, feeding, cleaning, wheelchairing, note-taking, massaging, driving, worrying, investigating, encouraging, blessing, kidnapping me and making me walk on the beach, letting me be a big baby for two months, removing any reason to my whines, her loving eyes and lips smiling the whole time, just to rub it in good. Why do I deserve all that?

I'm at a complete loss for how to escape these afflictions that have both saved my life and burdened me with an eternal, unpayable debt of gratitude and responsibility. I’ll stack up my plagues against anyone else’s, and it will be obvious that I am the one who has been most rarely afflicted.

To all of you who have afflicted me, just remember that what goes around comes around. God bless you all.

Daily Visits to Cedars Sinai Hospital

MONDAY night: home. Heaven on earth.

TUESDAY, Jan 15

• Our nephrologist calls early to summons Cam to his office . . . his downtown office. A visit there is akin to a French play of the slamming-in-and-out-of-doors genre.
• Leaving downtown doctor's office, we look like the clowns in a farce with their big leg-kick-circles to show how fast we'll go to get to the dialysis center before it closes (closes?! the dialysis center at the hospital never "closed"!)
• Our L.A. dialysis center has Cam's filter (ie, "kidney") ready on the machine . . . to torture. It was the kind of filter we learned the hard way that he's allergic to. I bark at people and sift through Cam's records until I find the information someone missed (I'll forgive, but let this be a lesson to you, readers -- check everything at every visit to be sure you're getting the care you're supposed to get).
• Cam's blood pumps very slowllllyy f o r one h o u r u n t i l the f i l t e r cl clo c l o g s. No more dialysis today.
• The doctor orders a medicine to be put in Cam's catheter tubes to dissolve any dried blood overnight. Perhaps the catheters clogged because his last dialysis was a long time ago: last Friday. Whatever the reason, the blood was pumping so slowly out of his chest catheter during dialysis, the slow-moving blood eventually created a huge clot in his filter (aka "kidney").

WEDNESDAY, Jan 16

• Chest x-ray.
• Dialysis; 3 hours, full run. Relatively uneventful, except for his insanely itchy legs (phosphorous that doesn't get filtered out can cause itchiness, but it's peculiar that his legs itch more during dialysis), and of course he has his usual raging headache in the last half of treatment that takes 4-6 hours following dialysis to quell.

THURSDAY, Jan 17

• Doctor calls to say there is "significant pleural effusion." Half of one lung is "obliterated" on the x-ray. Normal-person speak: one lung has lots of fluid surrounding and compressing it.
• Back to the hospital for the fluid to be aspirated (drained) via a long needle through Cam's back. In all, a liter of fluid is removed. Cam enjoys very much the improved breathing after the procedure.
• The day begins and ends with more dry heaves. The mystery is back, since we'd had a dry-heave reprieve for three days. I call our surgeon's on-call doctor at Wake-Forest. Still haven't gotten to the bottom of all the dry heaves . . . we're diligent about not letting his stomach get empty, and C-diff shouldn't be the reason. Hmmm . . . 

FRIDAY, Jan 18

• Meet with nephrologist, not down-town, but at Cedars Sinai Hospital. The visit is still somewhat like a French slamming-doors farce. But he's remarkably smart. We'll take it.
• Cam gets blood drawn for lab tests. The doctor will dialyze today or not based on Cam's lab results.
• We eat lunch outside at a sidewalk cafe and wait for the doctor's call. We praise L.A. for her beautiful blue sky.
• Doctor calls to say no dialysis today. Cam is to report for labs to be drawn again tomorrow morning before dialyzing.

EVERY DAY, Infinity

• Krisha is grateful.