Friends of Barry

Barry's Story - my story - begins in San Antonio, Texas, about 66-1/2 years ago at this writing. But it's springtime, so I'm gonna leap forward.

Sometime in March I started to experience brief periods of discomfort below my sternum. These were odd, infrequent, and not severe, so I did what I believe most healthy, vigorous people do when they experience unfamiliar, mildly unpleasant physical symptoms: I paid attention and waited to see if they would go away, which is what usually happens. I also mentioned this puzzling ailment to Dan.

Then a new symptom appeared: acute physical distress centered in the same area. These episodes were fleeting and infrequent, so again, though I was more concerned, my mode was watchful waiting. And again I told Dan. 

In mid-April we went down to Palm Springs for our now-annual visit with our old friend Bruce and his husband Alan - fun, generous, welcoming hosts. It's a treat to go to Bruce's and Alan's, a spacious compound in the desert with secret citrus gardens, shady terraces, and a view of snow-capped Mt. San Jacinto. The desert was blooming, the evening breeze fragrant, birdsong filled the air. But while there, I had a couple episodes of acute distress, witnessed for the first time by Dan, whose response was, "Pussy, you must call the doctor!"

So as soon as we got home, I made an appointment with my nurse practitioner Mark Illeman, both to tell him about my ailment and for my yearly checkup. Mark ordered the usual lab panel, with one addition, a breath test to check for acid reflux. When that came back negative, I went to see Mark again, specifically about my “episodes.” He said my symptoms could be caused by several things, as I knew already from my own internet research. So he ordered a CT scan, my first, and which I can tell you if you've never had one, is no big deal.

But the results of the scan changed everything. The CT technicians at Davies Hospital where I had the procedure told me when I was finished, a Wednesday morning, that it may take a day or two to get the results to Mark so I might not hear back till Friday or even Monday. Dan and I were planning to go over to some old friends for a reunion of my Gay Nineties party crowd, followed by dinner at a nearby restaurant. When Dan got home from work, I'd go pick him up, and we'd drive to the little party.

When my phone rang, I dashed across my apartment to answer it. When I saw Mark Illeman's name on the display, I knew it had to be bad news. Mark told me I had a tumor in my pancreas and two tumors in my liver. He added that he had forwarded my scan to the UCSF cancer department. At the end of our conversation I thanked him for calling, noted that I knew it was a difficult call to make, and added, "To be clear, you're telling me I have pancreatic cancer?" His one-word answer: Yes.

I could write pages about the rest of that evening. But I'll say just two things. Within moments of getting the news, I became aware that I was doing something I don't remember ever doing before, something that upon realizing I was doing it seemed theatrical, even melodramatic, as if it belonged in a stagy, overacted play or screwball comedy on the silver screen. I was pacing the floor rapidly, back and forth, intently, almost insanely, my mind racing.

I was trying to figure out what to do about the evening and how to tell Dan. So that's the second thing, telling Dan. My man, my pretty boy. My soulmate. The sweetest guy I've ever known. The greatest giver in my life. My sharer, my intimate other, my bedmate, my hottie, my inspiration, my co-frolicker, my artist, my history-together maker. My love. Need I say more about this?

What a rube I am when it comes to terminal illness (is this term used anymore?) Mercy! Others in my first circle know way more than I do, counseling me, for example, to let them help contact others with the news. At first, I shrugged off this offer, intent on telling my dearest and oldest friends myself. But after several calls, including to my twin brother Chris and younger brother Jamie and his wife Marci, I was exhausted. I couldn't do it. Now, three weeks in, nearly, I'm so grateful for the wisdom and help in this regard, especially from Howard and Posy, Anne and Dan, Sam, and my Dan.

One of the first people I called myself was my old friend Dan Wlodarcyck, a longtime doctor at UCSF and husband of Anne, the only human being in the history of my life I'm routinely known to spend an hour (or more) on the phone with in one sitting. I would say that Dr. Dan's availability, knowledge, interpretation, advice, activism, and always gentle bearing these three past weeks have been gobsmacking - except that's not true. Everyone who knows Dr. Dan knows what to expect, i.e., all of the above. Well, maybe not all of the above all the time. I know I'm a special case. If I'm glowing, it's not an after-effect aura from the IV contrast solution I got for my CT scan, it's because Dr. Dan makes us feel lighter and easier in these early leaden days. Powerful medicine.

To borrow a line from "Grass," a favorite childhood poem by Carl Sandburg: "What place is this? Where are we now?" After undergoing an endoscopic ultrasound under anesthesia week before last, I had my first appointment with my oncologist, Andrew Ko, the leading pancreatic cancer specialist, I believe, at UCSF. He feels I’m in good enough underlying shape to qualify for the most robust conventional chemo available, which I believe I’ll start next week, after getting a port surgically implanted under my skin this Friday.

I don't believe Dan or I have illusions about this disease. Oh sure, I've found myself conjuring escape stories - "Wrong diagnosis!" "You have that one-in-a-million lucky enzyme!" “We’ve never seen such a dramatic response to chemo!” - but these fantasies are fleeting and infrequent. My two hopes at this point are to live long enough for my new husband - see below - to qualify for my retirement benefit and for treatment to result in a period, however temporary, of subdued symptoms and relative vigor. Neither of these is assured. And neither is out of the question.

For now, I'm doing OK. We're doing OK. Highly functional. My main complaint is sometimes extreme fatigue. Still, I get dressed every day, make the bed, fix breakfast, go out - and fall farther behind in acknowledging cards and letters or returning texts, emails, and phone messages. I have pretty chronic discomfort, but it's not severe, and painkillers help. I feel nauseous sometimes and my appetite is weaker than before. I hew toward blander foods: potato salad, grilled cheese sandwiches, chicken soup Dan is by my side every evening and night.

Now it's time for a dose - "a big bolus" as my friend Sam would put it - of happy news. After almost 18 years together, Dan and I got married on Monday, May 20. It's kind of a funny story. We've always thought of ourselves as we-don't-need-no-piece-of-paper-from-the-city-hall people, to quote a line from Joni Mitchell's "My Old Man" on her ancient "Blue" album. Still, we understood that one day, when we both retired, it would make sense to get married for pragmatic reasons. My diagnosis made pragmatism urgent.

The day after I shared my news with Dan, he said, "Let's go to Grass Valley this weekend!" I hadn't thought of this, but embraced the idea immediately. As most friends know, Grass Valley and Nevada City are a home place, for me and for Dan. I lived there off and on from 1975 to 1982 and we visit frequently year round. I contacted our friends Howard and Posy about staying with them, and I asked Howard, recently the mayor of Grass Valley, if he could marry us while we were there. He immediately roared YES, he'd do whatever it took.

Saturday evening on the way up there, Dan driving, I told him about my conversation with Howard and Posy. "Are you asking me to marry you, Pussy?" Dan replied. I realized the answer was: yes. His answer: yes. And here we are. Monday morning we got in the car, Posy driving, stopped on a narrow street in Grass Valley, and Posy jumped out, returning half a minute later with boutonnières for the grooms, the most stylish element of our outfits, which largely consisted of the clothes we'd worn the previous day.

We drove to the county clerk's office, where Howard got sworn in to be a marriage commissioner for the day and where Dan and I got our marriage license. We next rendezvoused with my twin brother Chris and his handsome 23-year-old twin boys Kyle and Ryan and drove down to the old Highway 49 bridge over our holy river, the South Yuba. There Howard married us with Posy and Chris as official witnesses and Kyle and Ryan as our guests. Since neither Dan nor I had thought about rings or vows, How and Po supplied both, Howard's bar mitzvah ring for me to slip on Dan's finger and Posy's commitment ring - she and Howard are getting married at the end of the summer - for Dan to slip on mine. (That doesn't, however, make me the bride. We're two husbands.) Presciently, Howard produced some katubah text, from which we borrowed lines that suited two old marriage holdouts who love each other very much.

Mona Simpson, Steve Jobs's sister, reported that his last words were "Wow! Wow! Wow!" I don't know if this is true, but she's a storyteller after all and it's a good story. I'm not gonna wait to echo these words: Wow! Wow! Wow! We are so grateful for the response of family and friends, local and distant. How do people know what to do, how to fit in to our new reality, how to be so truly and instantly and repeatedly helpful? I am receiving a vital, if awfully late, education. Our lives are richer today by far than they were three weeks ago. We are so grateful for the wise and knowing, difference-making support and material help of our friends. We know we need you and we know you're here. Thank you.