Still Lucky

01/15/2024

Since moving to her new home six months ago today, Krisha's kidney has produced more than 300 liters (80 gallons) of p*e and cleaned out a ton of toxins.

This week, for the first time in 11 years, every single measure on my blood tests was in the normal range. And my blood pressure has been perfect all these months, again for the first time in a decade.

There's stuff doctors don't test for—they just know it's there. And they say it'll take another six months or so to reverse more effects of kidney failure, but so far the difference is more than I could have imagined.

One example: Two weeks into the new year, that little pork chop-shaped power pack has helped me hit 215,000 steps (plus a bit of jogging for the first time in years).

By comparison, that's as much as or more than every whole month but one last year before the transplant.

Not everything has been easy. The first months of recovery were tough. I'm still trying to rebuild stamina, mental focus, and muscle mass (I don't have a lot of any of them). We're still adjusting anti-rejection meds. I've had hip pain for months that may or may not be related to meds (we'll know more this week). We don't go out much or travel—I'm immunocompromised and there's lots of illness circulating.

And Krisha has had several really rough months. It doesn't appear to be related to the transplant, but I still worry every day that it is. And even if it isn't, I still worry.

But given everything, I couldn't wish for a better start. And I thank Krisha every day for her gift.

There really are more updates, backstory, and answers coming—I promise. Let us know what you're curious about.

01/01/2024

A STEP AT A TIME

I didn't plan to end December 31 this way, but I'll take it—I moved all day and felt great!

About a month after the transplant, I set my mind to walking more every day, since that was the only thing I could do to exercise while my abdomen healed.

At first, 8K a day was a difficult push. Then, after a month or so, I set 10K as my absolute minimum but usually tried to push through to 12-14K. I haven't missed 10K in four months.

By October, the goal was 14K, but I usually shot for 15-16K.

I've done a lot of walking between 10 PM and midnight to try to get my steps in, but I also don't beat myself up if I come up short.

I just move on to the next day. That in itself is a major win.

Average daily steps this year ~

Before the transplant: 6,956
After the transplant: 11,607
Last three months: 14,892

Total steps in 2023: 3.3 million
I'll shoot for 5 million in 2024.

I will never be able to thank Krisha for the power pack she gave me.

We have lots of updates to come...

Keep moving, everyone!

09/08/2023

Krisha and I are basically okay these days, but there's lots of pain and struggle all around right now. Help in any small way you can. And if you need help, hang on, and shoot us a message.

Please be kind

09/02/2023

It takes lifelong practice.

It’s dark because you are trying too hard.
Lightly child, lightly. Learn to do everything lightly.
Yes, feel lightly even though you’re feeling deeply.
Just lightly let things happen and lightly cope with them.

I was so preposterously serious in those days, such a humorless little p**g.
Lightly, lightly – it’s the best advice ever given me.
When it comes to dying even. Nothing ponderous, or portentous, or emphatic.
No rhetoric, no tremolos,
no self conscious persona putting on its celebrated imitation of Christ or Little Nell.
And of course, no theology, no metaphysics.
Just the fact of dying and the fact of the clear light.

So throw away your baggage and go forward.
There are quicksands all about you, sucking at your feet,
trying to suck you down into fear and self-pity and despair.
That’s why you must walk so lightly.
Lightly my darling,
on tiptoes and no luggage,
not even a sponge bag,
completely unencumbered. ~Aldous Huxley

(Book: Island https://amzn.to/47WawPU)

08/15/2023

This quote resonates so deeply for me. I know it speaks for Cam, too.

There have been so many instances of magic in our lives that I've simply lost count at this point.

Every text, meal, phone call, donation, direct message, gift card, comment on a post, card in the mail, visiting caregiver . . .

Magic.

Truly, Cam and I will spend the rest of our lives -- he with three kidneys and I with one, a perfect whole together -- trying to make more magic, and we'll still come up short of what we've received. That's how astonishingly people have shown up for us.

A very large village has carried us through kidney donation and transplant. And we don't take it for granted for a second.

Thank you to every one of you magic makers.

Let's all go make more magic. ❤️

08/14/2023

"The longer I live, the more deeply I learn that love—whether we call it friendship or family or romance—is the work of mirroring and magnifying each other’s light. Gentle work. Steadfast work. Life-saving work in those moments when life and shame and sorrow occlude our own light from our view, but there is still a clear-eyed loving person to beam it back. In our best moments, we are that person for another."

James Baldwin, from NOTHING PERSONAL (1964)

08/13/2023

We can't count the number of times people have done this for us over the years. And we can't measure our gratitude for those moments. We hope to do the same for others.

When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares. ~Henri Nouwen

(Book: Out of Solitude https://amzn.to/44WBrJD)

(Art: Painting by Henry Scott Tuke)

08/13/2023

The other day, Krisha posted about the times she has followed my hospital bed as I was wheeled into procedures.

I had no idea she was following me on Monday. (And honestly, most of the times she mentioned, I was too out of it to know she was there.)

When we got to the elevator lobby this week, the anticipation of being jostled across the threshold triggered a wave of emotion. My body remembered, but now it wanted me to let go.

And then the technician spun the bed around to pull me into the elevator, and I saw Krisha standing there. The only thing I could muster to say was, "It's the elevator lobby."

In a way, Monday's procedure was closing a loop that had opened almost eleven years ago.

In 2012, I was in a precarious state, and we were placing a dialysis catheter in an emergency situation, on a weekend, after Krisha had fought to have it done right away.

This week, we were calmly removing the catheter I've had for the last year because the recent crisis has passed.

On December 21, 2013, it dawned on me that it was exactly a year from the day the first catheter went in, so I wrote the post below.

The meanings I draw from these moments and sensations and memories have changed over time, and I imagine they'll change forever.

In the meantime, I'm trying to be permeable—letting emotions and thoughts come and go as they will, opening space for trauma and judgment to leave as fast as they will and for grace and hope and curiosity to flood into the void.

It's not always easy. But I'm grateful for the 3,521 days I've had to practice. And for Krisha and all of you who have helped me.

* * * * *

GURNEY
12/21/2013

A year ago today, I came to my senses on a hospital gurney. The bright light made it hard to keep my eyes open, but I perceived I was back in a place I knew. I wasn't sure whether I was coming or going, but I began to understand I was in a transitional space.

There was a rumble and a bell and a whooshing sound. And that's when I knew where I was—the elevator lobby.

Krisha started talking to me, softly, lovingly. Then my mom grabbed my hand. I was too drugged up to follow what Krisha was saying—she tried to explain some procedure—but mostly she and Mom kept reassuring me, telling me not to be afraid.

It had been a rough week and a half since the surgery. My kidneys had shut down, I had gained 30 pounds from water retention, I felt so bloated it was hard to breathe, dialysis was not going well with the access in my neck, and we were still trying to find the right balance of painkillers to help me sleep. The big success of the week was that I had finally farted a few times and pooped on Thursday. (Yes, Krisha's notes are thorough.) Huzzah.

Now here I was, on my way to a procedure I didn't understand. But I was sure of one thing, given the way Krisha and Mom were talking to me—there was a strong chance I wasn't coming back.

This would be the last time the gurney guy would bounce me over that damn gap between the elevator and landing. The last time I'd feel Mom pat my swollen feet. The last time I'd see Krisha's blue eyes and bright smile. I was sure of it.

Of course, I wondered for a moment why Krisha and Mom seemed so calm—even happy—about sending me off to my demise. No tears. No promises to fulfill my dying wish. No threatening the doctors as they had done before. Just them telling me over and over not to be afraid.

I tried to say my goodbyes but fumbled it badly. I hadn't ever thought this moment through, and now my brain was fried. But I was calm. Yes, even if unexpected, this was exactly what I wanted—smiles, I love yous, a tight squeeze of the hand, a kiss, everyone at peace, even happy.

We banged into the elevator, the doors whooshed shut, and a few minutes later I rolled into a darkened procedure room.

It started badly—the excruciating move from gurney to table, being inverted, feeling like I couldn't breathe, finally going under.

I came to my senses again a short while later, back in my room, to see that same smile and those blue eyes and feel that same hand squeezing my foot. And knowing a little better now how I want to live, or really, how I want to die.

In the last day, I've pulled an all-nighter finishing up some good work, flown from brilliant sun to stunning snow, hung out with my entire family, seen a beautiful play, and eaten so much I can hardly breathe. Nothing extraordinary, but I'm extraordinarily grateful for such ordinary things.

I started out this evening planning to post a few family photos with Santa, so I have no idea where all of this came from. Maybe it's to acknowledge that I couldn't have survived the last year without my wife and family. And I couldn't have made it without the many friends who called, emailed, snail-mailed, texted, visited, gave gifts, encouraged, or simply sent a positive thought in my direction.

Thank you all for a wonderful 365 days.

08/08/2023

DAY 25 POST-TRANSPLANT

Today is the first time since December 11, 2012, that the major indicators of overall kidney function (creatinine, BUN, eGFR) have been in the normal range.

(I'll talk more about lab tests another time.)

I had surgery to treat my cancer on December 10, 2012. The next day, things looked okay.

But on the 12th, my kidneys said, "Peace out!" and decided to go on vacation because of the damage they had suffered from the operation and chemotherapy.

They stayed away for a couple of months and then finally came back, on the condition that they were only going to work part-time.

So we hobbled along like that until mid 2019, when they began to decline. We had known all along that they would probably start to fail within 10 years or so, but there was more damage than we anticipated, so we didn't make it quite that far.

By mid 2022, I was in bad shape, and I started dialysis in June.

But now Krisha's champ of a kidney (which someone suggested we call "Kridney") is getting the job done better than ever.

I am overwhelmed by and infinitely grateful for her gift.

08/07/2023

In December 2012, I walked behind Cam's hospital bed as he was wheeled back to lots of different rooms.

The surgery that saved his life from mesothelioma also nearly killed him, so there were lots of procedure rooms to be wheeled to for all the ensuing complications.

When I'd walk behind his bed each time he was pushed to yet another procedure, I dreaded the thresholds.

Because no matter how gently the orderly moved his bed, the jostle of going over a threshold or into an elevator was agony for Cam.

Today I again walked behind Cam's hospital bed as he was wheeled back to surgery.

Today was different.

A big public thank you to past Krisha for working many years on my nervous system.

Because I had a moment this morning walking behind his bed to surgery that felt like I was right back in 2012.

But I've practiced lots of tools for anxiety and PTSD.

So I quickly reminded my brain that I'm *not* across the country at Wake Forest Hospital.

I'm here, in my hometown of Los Angeles.

It's not 2012 today. And we're not here in a crisis.

It's 2023, and the outcome of today's surgery is 99.9% assured to be joyful.

And just like that, my brain accepted the message I gave it...

No inkling of a panic attack.

For me, that's a huge accomplishment that I've fought and worked very hard for.

I'm overflowing with gratitude to the dialysis catheter that enabled Cam to stay alive.

And I'm ecstatic that at this very moment, it's being removed from Cam's chest.

I can't wait to hug him without worry I'll disturb the hardware connected to his heart.
...

I just got the call from the surgery nurse. Removal of the catheter went well!

I'm here quietly, joyfully sobbing to myself in the waiting room.

I'm so grateful to all Cam has endured in order to stay alive.

Today is a very, very good day.

08/07/2023

DAY 24 POST-TRANSPLANT 💪🏻

Dialysis catheter *removal* day! 🎉

08/07/2023

How should we celebrate Cam getting his dialysis catheter removed from his chest on Monday?

We're still recovering from transplant, and he's immunosuppressed. Watcha got? 🎉🥳

08/04/2023

We're alive!

Cam goes to the transplant clinic twice a week for the first month.

I'm now well enough to go to appointments with him again. 🎉

Lots of ups and downs over here, but a deep gratitude flows through it all.

Thank you to everyone who's reached out -- we'll do a proper update soon.

Today is three weeks post-transplant! 🎉💪🏻👏🏼🥳

07/27/2023

This video was a Day 10 Post-Transplant Update from Monday that I didn't post at the time. (Today is Day 12.)

We thought I should do another take of this video that might be more . . . shall we say . . . coherent and easy to watch?

But a huge part of what this page is for is to show the very raw parts of illness in order to firmly communicate, "You're not alone."

I wasn't on pain meds while making the video. This was simply my best effort to fight through days of exhaustion to speak.

So if you want to hear a 5-minute update in which I discuss my post-op follow-up with my surgeon -- and in which I repeatedly touch my face in order to stay moderately focused on the camera -- here you go.

Pull out the popcorn, people.

Whatever you're going through, take a deep belly breath with me now.

We're sending huge gratitude for all your support and tons of love right back to you.

07/24/2023

Days 8-9 Post-Transplant: Being patient with the ups-and-downs and messiness of it all

(See "Dump that cup" video linked in comments)

07/22/2023

The new ritual for the remainder of Cam's life ~

8 AM & 8 PM

Charting and taking pills

(Edit by Cam) Yes, Krisha's kidney is a CHAMP, but it hasn't quite figured out my nose, so I'm still congested all the time.

And the pills are really not that bad. I just need to learn them. Another day or so...

07/22/2023

Day 7 Post-Transplant: Today was rougher.

07/21/2023

Day 6 Post-Transplant: A symptom inventory and a few thoughts on pain.

Be kind to the people you meet. There's a lot of pain in the world.