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.