The Birthday Gifts Blog

Birthday Blog Prologue: I haven’t blogged much in the past ten months because I’ve been struggling with things that I couldn’t bring myself to put on the page. I learned a lot this week, including how fortunate I am. And so for whatever reason, I’m ready to put the words on the page.

* * *

It’s Cam’s birthday, but he’s the one who’s giving me gifts.

We spent this week at the Mesothelioma Applied Research Foundation’s annual symposium in Washington, DC. MARF is the leading organization committed to both funding research and supporting patients with mesothelioma.

We spent Wednesday on Capitol Hill, running from office to office to meet with our congressional representatives (well, mostly their staff) to raise awareness for desperately needed research and support for veterans, who make up about a third of meso patients.

We spent Thursday and Friday in a hotel conference center, listening to hours of researchers reporting findings, doctors sharing their observations, and patients, caregivers and the bereaved swapping stories and information. It’s a remarkable conference because we all sit in one big audience together: doctors and researchers report to colleagues and patients alike, and patients and their families get to interact with the medical professionals in a non-clinical setting. It encourages the scientists to see the people who benefit from their research. And it strengthens us to hear from the people who are in the labs and operating rooms, grappling on the other end of this evil disease.

It’s not how I’d want to spend a birthday week, but I’m glad Cam initiated our trip this year.

            To appreciate the gifts Cam gave me, you need more context: you need to know how much I needed what he gave.

            One of the last breakout sessions of the symposium was for caregivers. I had been delayed by another patient, so by the time I entered the meeting, most of the twenty caregivers sitting in the circle had already shared their stories.

            Two people introduced themselves before it was my turn. The one who spoke right before me explained that he’d been torn—his wife was at the end, and he thought maybe he should have attended the bereaved session across the hall. He was envious of the rest of us still providing hopeful care.

Then it was my turn, and everyone was looking at me. And something small—or maybe not so small—just kind of snapped inside. The sticky glue that had bound my vocal cords shut for months melted away.

            “My husband has peritoneal mesothelioma. He had HIPEC in December 2012, and the hot chemo wash during surgery caused kidney failure. He didn’t respond well to dialysis, so thankfully his kidneys got to the point after a couple months that he didn’t have to continue it.”

            I didn’t stop talking, even though I kind of wish I had. I spilled what had been stewing inside since last June when Cam had his six-month follow-up CT scan. See, everyone wants to hear from their doctors that they’re “NED,” that the scans show “No Evidence of Disease.” And that’s what we got on his scan in June and again in December. Yet I could no longer hold back the outrage I have for this monster disease that eludes and hides and haunts.

            As I continued to talk, I could feel that I was in that place my brothers call “dramatic”: My hands found their way up the side of my head, pushing through my hair; my already big eyes opened wider; deep emotion punctuated the frustrated words I heard coming out of my head, as I threw them down into the middle of the circle of caregivers:

            “N . . . E . . . D . . . makes . . . me . . . CRAZY!

And my mouth was off and running.

“We found the cancer because my husband had his appendix out, and the good pathologist who examined the tiny slide of appendix tissue found the mesothelioma. No one in L.A. treats peritoneal meso. Our oncologist said, ‘I know what it is, but that’s about all.’ We spent four months searching the country for an expert. Cam had no symptoms, and he felt great after the appendectomy. And NONE of his CT scans before surgery EVER showed ANY disease.”

I paused. People blinked at that part about the clear scans.

“We went with the doctor we found in North Carolina. The others wanted exploratory surgery. The North Carolina doctor was the only one who said, ‘I guarantee you there’s more disease in you than just what’s on that slide. You need to treat it.’ And he was right. When Dr. Levine sliced Cam open for debulking and HIPEC, it took him six hours to cut and scrape out all the visible cancer that ran from the bottom of Cam’s abdomen up to his diaphragm.”

I kept talking. Words were falling out very fast.

            “Cam never complained, but when his kidneys totally shut down after the HIPEC and he gained thirty pounds of water weight in the four days after the surgery, he told Dr. Levine that he felt he was going to burst out of his skin. Normally Mr. Positive, Dr. Levine, who had now performed 515 of these invasive HIPEC surgeries, looked down at my bloated husband, covered in wires and tubes that tethered him to a hospital bed, and he minced no words: ‘With the amount of cancer I found in you, if I hadn’t done what I did, you maybe would’ve had a year.’”

            And I didn’t stop talking then, either. I had slowly been awakening during the course of the conference to the realization that Cam’s experience with clear scans but lots of cancer wasn’t as typical as I had once thought for a mesothelioma patient.

            “So he was FULL of cancer, but it didn’t show up on any scans. And yet, scans are all anyone has to track this? IT’S CRAZY-MAKING! I’m afraid I’ll wake up one day and suddenly be in the exact position of this dear man sitting next to me—the cancer will be on the scans because it’s taken over.”

            And to purge months of loneliness, I dumped one more final burden on my caregiver friends: “Last week I saw a family member and told her, ‘With this disease, it isn’t if it comes back, but when.’ And I'm pretty sure she just thinks I’m pessimistic.”

            There. It was out.

            Ten more minutes of other people speaking, and the group session—the tiny community of people who understand—would not meet again in real life for another year. As it ended, the group leaders didn’t run to the people in the circle whose spouses would be entering clinical trials or who were in the midst of their sixth round of chemo; instead, they swooped in to offer comfort to me.

            I felt bad about it immediately. Others were in a worse place. I shouldn’t make people worry about me. And yet I was amazed that there was so much goodness among those caretakers that they had room in their hearts to support me with the uncertainty I was grappling with.

            Cam asked me several times that night if I was okay. I didn’t want to tell him about the caregivers’ session. I didn’t want him to worry, but I also thought it might get back to him anyway.

            So while we were getting ready for the symposium’s closing dinner, I looked at our reflections in the mirror and recounted my diatribe to the caregivers. I even revealed the “it’s not if but when” part, the unspoken thing that has been needling me most.

            And that’s when he gave his first birthday gift to me. He looked at me with total love and said, “It’s okay. Everything you said is okay, and everything you feel is okay. It’s okay to feel what you feel.”

            The words sunk into my skin and soothed. It’s not the first time he’s said it during our cancer journey, but the fact that he can say it when I need it is everything.

            “But how do you do it, Cam? There’s no chink, no crack in your attitude. I worry that you’re keeping it inside but molding it into something positive when you speak.”

            “I just keep remembering what you named our blog.” He paused and looked at me a moment. “We have today.”

Then he kissed me and hugged me tight. My first gift of healing. Off we went to dinner, where Cam made the rounds like I’d never seen any introvert do: shaking hands, patting backs, embracing hugs, giving thanks for others’ inspiring fight, and making as many new friends as he could.

            The second gift came Saturday morning.

            There we were, getting ready for the day, looking at each other’s reflection in the mirror again. I couldn’t stop thinking about Cam the night before at dinner, and one particular conversation played through my head: I’d made a new friend, a bubbly caregiver whom I introduced to Cam when he circled back around to our table. My new friend greeted Cam and made a harmless joke about me needing to improve my attitude—clearly referencing my outburst at the caregivers’ session.

            Cam was immediately at my defense. He put his hands on my shoulders and said sincerely, “She has a great attitude.”

            Standing in the mirror Saturday morning, I questioned his defense of me: “Dr. Levine said that the way to handle not being able to find things on a scan is to develop nerves of steel. How will I know if I have nerves of steel? What if I’m actually a crazy person without nerves of steel?”

“That's the beauty. You decide. You determine. You declare what you will be.”

“And is that enough? If I decide, does that make it reality? Will God see it that way? Will other people see it that way?”

“Some people will see you as faithful; some people will see you as crazy. That's part of the lesson, too. But if you're concerned about what you're putting out to other people, you can cultivate what you put out.”

That was gift number two.

Gift number three was this morning.

Being in DC, we wanted to take in some sights on our one day before heading home. We’d made it to the Library of Congress yesterday afternoon, but Cam wants to see every. possible. thing. when. he. travels. I had commented yesterday that together time was actually what I needed.

So gift number three was extra time in bed after we woke up. We’ll be apart for some weeks for his work, and I needed to soak up the smell of his skin. He dozed while I stroked his back for an hour and memorized him. He’d wanted to rush over and take in the Folger Shakespeare Library, but he gave me quiet time together instead.

Gift number four came as we settled into our plane seats. I pulled out the book for this month’s book group, The Fault in Our Stars, by John Green. “It’s about cancer,” I rolled my eyes. “Two teenagers with cancer. Not exactly what I want to read this week after the conference and while we’ll be apart.”

And with all the serenity in the world, he said, “Don’t be afraid of cancer.”

My eyes were immediately welling. “Don’t be afraid of cancer?” Incredible.

“It can’t take anything important.”

“It can take everything! I know in the eternal perspective we have each other, but I have a finite, human mind that can’t grasp that.”

Again he spoke evenly, with as perfect a love as I’ve ever received from anyone, “Don’t be afraid of the book. You love books. Don’t be afraid of cancer. You love people with cancer. Don’t be afraid of the teenagers. You love teenagers. Don’t be afraid of cancer. Don’t be afraid of anything.”

Gift number four. The most perfect gift I’ll ever receive. And Cam gave it to me on the birthday he fought to have.

Cleaning

It's been a long time since my last post, and I'll be honest: I'm still not ready to write why I've been struggling to share Cam's journey.

Cam is well, so let's leave the explanation of my demons for another day.  :)

TODAY I just want to thank God, the universe, and every cell in Cam's body for the goodness that we have right NOW (even though I just heard him in the other room swear at his computer).

What's today's good news? We cleaned some stuff. (Always makes me happy.) While knee-deep in the coat closet, Cam found the canvas bag that I had toted back and forth to his dialysis sessions a year ago.

He arrived in the kitchen with the canvas bag and a smile, declared that we didn't need to store our dialysis bag anymore, and proceeded to pull out its contents:

When Cam was doing dialysis three times a week, I found as a caretaker that I needed to be ready for the four-hour sessions, plus drive time to and from. I'd usually pick us up a sandwich at the medical center at some point, but I kept some essentials in our dialysis bag:

Water and juice (not pictured)

Crackers, applesauce and spoon

Hand sanitizer & wipes

Chapstick

Medication and Tylenol

The Luna bar and fruit snacks were for me -- can't be a caretaker if you're having a blood sugar drop!

Other necessaries that aren't pictured that should go in the bag:

Small travel blanket

Sun glasses

Dialysis was really, really rough on Cam. He would get terrible cluster headaches. Plus, I could tell during every minute that he was miserable in a way impossible for him to articulate -- but Cam wouldn't have complained even if he could have articulated it. Frankly, I still can't even begin to appreciate what it must feel like for a patient with kidney failure to have his blood sucked out of his body, cycled through a cleaning machine, and then put back into his body -- repeatedly.

His last dialysis session, a year ago, resulted in an allergic reaction to the dialyzer . . . something that's supposedly extraordinarily rare, yet Cam experienced it multiple times. Cam's penchant for being unique is remarkable.

During that last session, he was suddenly freezing and asked me to go to the car and dig some items out of our emergency car kit. At first he looked cute in his knit hat, gloves and a big blanket, but soon it wasn't enough, and the staff had to bring him an insulating plastic blanket:

But it wasn't long before his temperature spiked, his blood pressure changed drastically, and I was seeing all the other tell-tale signs of an allergic reaction. I insisted that the technicians end the dialysis. They weren't so sure and wanted to phone the doctor.

Meanwhile, my husband was having an agonizing experience. He looked corpse-like:

It was terrifying.

So I fought with the technicians, insisted that I was the one who'd observed the same signs when he'd had dialysis reactions while still in the hospital, and that I knew what I was talking about.

The technicians relented and began shutting down the dialysis machine.

The doctor arrived and sent him to the ER . . . which was good, because we found out Cam had a lingering infection. But the three days in the ER were not so fun while doctors ran tests to be sure that the infection wasn't in his actual dialysis catheter (which went straight into his aorta and then heart). They feared that if there was infection in the catheter, he would become septic. Thank goodness three days of test results showed that the catheter was fine.

I think our doctor's decision that Cam could get by without dialysis was prompted in part by how freaky it was that Cam kept having allergic reactions to the dialyzer. Cam's other reactions had been in the hospital in North Carolina, and when we initially warned our L.A. doctor about them, he had been incredulous: "Those are rare. A chance of one in 4,000!" Mmm-hmm. Cam has always had a way of inspiring others to step up their intellectual game, and not even his doctors could ever escape that.

But here's the point of TODAY: that's in the PAST! Look how good this sexy man looks while cleaning around the house on a Saturday afternoon NOW:

Cam probably now has 50% function of his kidneys at best, but he doesn't let that get him down.

Awesome, right? 

Goodbye, dialysis bag. 

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. 

-----------------------------------------------------------------------------------

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—