On the Mend

I’m going to pin it on three factors: First, it’s an amazing time to be alive, in terms of medical innovations. Half the techniques used to detect my prostate cancer, quantify it and treat it were science fiction a decade ago, and only reached the end user in the past couple of years. Granted, in another decade or two, you’ll probably just spit in a tube for all the analysis, and be handed a CRISPR-customized pill to swallow to take care of everything. (That is, if we haven’t blown ourselves back to the stone ages or regressed to superstition-laced pseudo-religious feudal psychoses by then. But you know what I mean.)

Second, the whole cancer treatment team at UCSF. I just can’t say enough good things about them. The first facility I sought treatment at, last fall, recommended a course of treatment without even having looked at the PET-CT scan that had been done at their facility. Then pooh-poohed our questions about what tests might clarify our risks and options, and left me hanging for weeks to hear back on a referral.

I reached out to UCSF for a “second opinion” and the contrast was night and day. The young medical oncologist we spoke with listened intently. For every question we had, his response was, “That’s an understandable concern. Here are my thoughts on it, here’s a study supporting those thoughts, and here’s where you are on the graph from that study.” He’d handed my MRI, biopsy and PET-CT scans off to the relevant teams prior to our meeting. Thirty minutes after our meeting, he called me with what he’d heard back from them. “I didn’t want you to have to wait and worry, he said.”

Every single person we interacted with at UCSF had the same high level of attentiveness and professionalism. “Yes, that’s a good question – let me show you the chart that I’m going to base my response on, and a test we can do to see which of those lines is you.” The radiation oncologist and surgical oncologist talked to each other to compare notes. The medical oncologist I first met acted as ‘quarterback’ for the team, keeping me in the loop.

In my case, everyone agreed that surgery and radiation (“knives or nukes?”) were equally good options. That it really just depended on which side effects – whose risks and severities were explained impartially – I felt best about.

Opted for surgery; I’m happy to go on at length about that decision, but not here.

UCSF offered me a few dates four to six weeks out. (“Should I be worried about waiting an extra few weeks?” “That’s a reasonable concern. Here’s a study about that I was co-author on. Here’s where you are on the chart – at your cancer stage, there’s no measurable increase in risk for a delay like that.”)

Taking the later date allowed me to go off on that little South Pacific jaunt I got to regale you about last month. Good, important work accomplished. Wonderful new friends, new adventures and stories to bring home.

Once I got back, the in-hospital and follow up experience was as nurturing, supportive and respectful as I could imagine. The surgeon reviewed the game plan she’d laid out with me earlier: what she was expecting to be able to save, what she planned to sacrifice, and what contingencies she had up her sleeve if there were any surprises.* When I woke up a few hours after, she stopped by my bedside and gave me a debrief: she’d run everything according to plan and was pretty happy with it all. How was I feeling? Great, really. Surprisingly great.

(* One earlier surprise, revealed by the PET-CT scan, was that unlike most folks who have one kidney on each side of their back, I’ve got this funky thing called “horseshoe kidney syndrome.” It’s just what it sounds like: a single big kidney shaped like the letter “U” that spans my whole back. Surgeon studied all my available imagery to make sure she wouldn’t encounter any other surprises once she got inside.)

Recovery? The surgery itself was robotic – as I understand it, surgeon wasn’t even in the same room. She was next door over, operating the five-armed, knife-wielding robot via a set of screens, buttons and joysticks. The result was that when I woke up, rather than a big old slash across my belly, I had a sort of Morse code pattern of “. . _ . .”: two little sutured holes on each side and a single 3 centimeter stitched “dash” above my navel. Yes, I’ll show you a picture if you ask, but no, I’m not linking anything like that into the blog.

Much friendlier than the knife-wielding, organ-harvesting robots in Fallout.

They kept me overnight for observation. I’d need a catheter for 7-14 days to let the obligatory resectioning of my urinary plumbing heal up, but I was able to get up and walk as soon as I felt like it. I was pacing around the room by the time they got around to the discharge papers in the morning and let Devon take me home.

Pain? My abs felt like I’d done way too many crunches, but I never needed anything stronger than ibuprofen and Tylenol, and stopped those after about five days. Catheter came out yesterday, and ten days in, I’m having to be mindful to take it easy.

Okay, that’s two.

Third: remember, I was born lucky. I have no other way to explain it. We’re realizing that prostate cancer seems to run in the family, but if you detect it and deal with it, the prognosis is generally excellent. And we detected it at least a year earlier than we would have had I not been curious about a thing or two. I stumbled into a dream team of physicians, including the conscientious and gifted protégé of one of the top cancer surgeons in the world. The configuration of the tumors made the surgery straightforward. We’re still waiting on the final pathology report, but as far as we can tell, I’ve dodged every single possible side effect of the disease. I am, as Dan Quayle infamously said of American Samoans, a happy camper.

I’m hobbling around Palo Alto for another week or so, then I’ll be heading back up to the farm. Folks keep asking me what my next adventure is (South Pacific, cancer, then…?). Honestly, I don’t know yet. I’ve been neglecting the farm. The time at sea suggested a lot of improvements we can make to the ship software I’ve built. I’ve got a bunch of new songs that I need to try to hone on stage, including a couple that I wrote on the boat. There are a few songwriting contests coming up that I’d like to submit something to. And, right – I’m supposed to take it easy for a while, aren’t I?

12 responses to “On the Mend

  1. So glad to be reading this detailed chronicle. with a happy ending. It sounds like a story soon to be released at a theater near you or maybe made into a ballad. I could say I prayed for you but I understand God doesn’t answer mail so you get full credit for your choice of the best team at the best facility and, of course, your positive attitude and great support system.

    Good days ahead, Norm

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  2. David

    Thanks for sharing your story and so happy you are on the mend. Must have been so scary but the outcome seems to be another lease on life. You are a lucky man in so many ways. Now appears you can continue your journeys. I follow all your emails and although I have been traveling a lot – just came back from Patagonia – hiking an and biking. Keep up your positive attitude and keep pushing towards new adventures. So happy you are healthy again

    Bob Vogel

    Writers Matter

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  3. So glad that everything went well. I can’t believe you were out of the hospital the next day. Amazing. You sound very much alive and appreciative.
    Sending you a big hug,
    Marilyn

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  4. So glad it all worked out. I never knew there was a kidney like yours, but you seem to have always wanted to be different. 😁

    Despite what the headlines often say about VA care for veterans, I had a great experience. In 2008, a great urologist detected prostate cancer when it was barely big enough to biopsy. Like you, he told me I could wait but that they would do regular biopsies. In 2010, he said it was time, but robotic surgery was just becoming available, and the VA did not have it. I opted for a then-new type of radiation in which the source rotated around the body and did not burn tissue. It seems to have worked as it is 2006 and no sign of reoccurrence.

    You are absolutely right. There is no time in history when it would have been better to be alive just because of the medical advances we have available now.

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    • Great to hear you also had a good experience with your treatment, and also caught things early! One of the many reasons I’m eager to get back to the farm is that your wonderful memoir is still waiting next to my easy chair, half finished…

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  5. Thank you for the update Pablo. I’m so glad you got that second opinion. Your first sounded awful. I’m glad you found a great alternative and that the outcome was so good. Such a relief! Oh, probably for you too. 🙂

    Love and hugs to you, Devon and the kids

    Harmony

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