Last Saturday, I made my first in-person appearance since the pandemic at Boston’s Boskone convention. It was brief but enjoyable. I moderated a panel on “Hopeful Futures in SF,” which is something I feel we need more of; and I moderated a panel on “Writing and Structuring Long Series,” which is something about which I feel more writers should finish what they start. Ahem. Both panels were lively, with good input from my fellow panelists. I also talked to a fellow writer who told me he’d made extensive use of my online writing guide when teaching writing to high school students. This totally made my day.
Tomorrow I’m off once more to Puerto Rico, because we need to get going again on The Ponce Chronicles, or something like that. Also, I miss my wife and my dog. One of my daughters is already there, and the other one just landed in Ecuador. Doesn’t anyone stay home anymore? I guess not. I’ll be back in touch when there’s something to report in the next episode of the hit webcast, The Ponce Chronicles. (Cue rousing theme by John Williams.)
Here’s another of my promised updates on my battle with pulmonary fibrosis. Now back in Boston (see below), I just had my first CT scan in a couple of years, and the new images show that my interstitial lung disease has progressed more or less the way my pulmonologists expected. This is a lot like, Sorry to report, but we’re continuing to spiral in toward the black hole. Still, according to my pulmo, she’s seen worse. My need for supplemental oxygen has doubled in the same time frame, which is not great news, either. I have a “new” 10L oxygen concentrator here at home now, as well as the actually new one I got in Puerto Rico. This thing is loud! It might be saving my life for now, but it’s killing my hearing and threatening my daughter with migraines at the same time. Looks a little like Robbie the Robot.
The new drug that promises to stop the progression of this damnable disease has just completed dual trials, with favorable results (according to my doc, who keeps her ear to the rails). There’s hope that it could be approved for use before too long. But that’s only if the Musk/Trump wrecking ball currently demolishing our government doesn’t disrupt the FDA’s drug approval process. (Bets, anyone?) That aside, in April, when I come back from Puerto Rico for the second time, I’ll be looking to get listed as a lung transplant candidate.
That’s all kind of a downer, isn’t it? Let’s see if I can end this on a more positive note: I have a whole lot of people praying for me. And I can still do all the push-ups and squats and lunges and weight-lifts I was doing before. I just need a little extra push in the atmo department. And ear muffs. What’s that? (Cupping hand to ear.) No, I can hear you just fine! It’s just… can you stop mumbling and speak up a little?
Upon arriving home from the tropics, this was the scene that greeted me. Brrrr.
Recently we went with a friend of Allysen’s to see this remarkable installation of art at Boston’s Franklin Park Zoo. It was spectacular, an hour-long walk through the grounds of the zoo, winding past a continuing display of gorgeously lit fabric-covered, wire-frame sculptures, many of them animated. It was mesmerizing, and a remarkable achievement by the artists who created it. Here are a few of the highlights:
We didn’t see any orgs, that is, living zoo animals. I asked about it as we were leaving, because I thought maybe they had all been moved to another facility for the time being. But no, I was told, they were all just asleep in their enclosures—apparently uninterested in the fairyland just outside their doors!
I said I’d post from time to time on how I’m doing, health-wise. I guess it’s about that time. I just had my semi-annual visit with my pulmonologist, complete with the usual PFT (pulmonary function tests), to see how well my lungs are breathing. The answer is, almost as well as this time last year. I am reasonably stable, which with pulmonary fibrosis is the best outcome you can expect with the treatments now available.
I’d be lying if I said I wasn’t a little disappointed. The Chinese herbal treatment I’m on is reported to have helped several other PF patients get measurably better, and of course that’s what I wanted, as well. But I don’t know the details of the other patients.
My doc was pleased that I’m doing as well as I am. We discussed the Chinese herbs, and when I said the main definite benefit seems to be improved energy, she assessed that as a win and suggested I keep taking them. We talked about some new drugs coming along in clinical trials; there’s one she’s excited about, which offers the hope—no, not of a cure—but of real stability and the halt of decline. I said how soon, and she said it was being fast-tracked with two simultaneous trials, and if the tests prove out, it could be available in a year or two. Now I’m excited about it.
Now, if only they had something to keep me and my family from tripping over the damn oxygen hose all the time! What we exos have to put up with, carrying our own atmospheres around with us!
I took the Mothership out for a spin today, just to run it. I had no real destination in mind—maybe Wegmans, maybe Costco, maybe nowhere. Instead, the road led me to Walden Pond. What a beautiful end-of-summer day for it.
My lovely wife Allysen has retired! Her company, Ab Initio software, gave her a great sendoff. (Ab Initio has long been outstandingly generous to its employees, and her departure was no exception.) She’s been editing their software documentation for the last thirteen years. With perfect timing, our sister-in-law Youngmee came to visit on that very evening and spent the weekend with us. This is Allysen receiving a toast from us at one of our favorite restaurants, the Menotomy Bar & Grill.
In her first half-week of retirement, Allysen has celebrated by sleeping, and sleeping some more. Tonight, another great friend flies in for a visit!
Rebuilding the front porch just didn’t seem like enough. After all, the porch had only been needed for the last ten or fifteen years. The roof has definitely been on the to-do list for longer than that. And now… it’s done! K’ching!
For six weeks now, I’ve been gulping a pile of Chinese herbs from my potions master that look like this, dissolved in hot water, twice a day. Yum. (No, not yum. Gaghh.) So how’s it going? Is it working? I’m glad you asked. Reports from my crack team of observers say that I appear to have more energy, more focus, more life. Myself, I can’t tell! But I believe them, and I’ll take the win. Also, my years-long morning cough has largely gone away. I feel subjectively that I’m less short of breath when I exert myself. Does that mean it’s working? I hope so.
Empirical evidence is less clear. My O2 readings are about the same—dipping down when I exercise and coming back up, as always. I’m using the same amount of supplemental oxygen. I won’t have pulmonary function tests at the docs until August, and then we should know if this regimen is working in a measurable way. Fingers crossed.
Though I had high hopes for better on the O2 end of things, I am encouraged by the energy, and the other things. Keep on kiting!
Once there was a man who had pulmonary fibrosis, a disease of unknown cause and poor prognosis—and his very kind and very smart doctors who knew the disease well looked at him sympathetically, and with open hands said, “We’re really sorry, but we’ve got nothin’. This disease has no cure.” Well, short of opening him up like a clamshell and putting an even more unlucky person’s lungs into him—and then stitching him up and putting him on antirejection drugs for the rest of his life. If that were me, I would find the prospect both daunting and discouraging. Oh, wait. That is me.
Fast forward a little. One day he—okay, I—read a letter in the Pulmonary Fibrosis Newsletter from a patient who, more or less in desperation, had turned to Chinese herbal medicine—and after eight years of decline, is now improving. Not just feeling better, but showing better numbers in the pulmonologists’ tests. This person included the Chinese herbalist’s phone number; he’s in the Seattle area, but consults by phone. So I thought, what have I got to lose, I’ll give him a call.
Forward again. I’m just starting an intensive regimen of Chinese herbal medicine, while continuing all my other medications. Herbalist Bob says he is currently treating around five patients with PF, and all are improving. The treatment is expensive, and of course not covered by insurance. It’s accompanied by an alarmingly extreme high-meat-protein diet. The idea is to lose weight and improve the circulatory system. If I’m measurably better in four months, we’ll know it’s working. If not, it was worth a try. (While I have some doubts about the diet part, this guy is mostly about the herbs and the state of blood flow throughout the body, especially in the lungs. He doesn’t talk about chi, or energy flow, or meridians, or any of that stuff, which I find mildly reassuring.) All the herbs come from Taiwan and are tested at multiple points along the way. I’ve just had my first dose, and they don’t taste too bad.
I’m calling this story Tales of the Kite because kites make me think of Chinese lore, and also because I sometimes feel like a kite rising and dipping on the wind, anchored only by the most tenuous of threads of faith, hope, and really tiresome exercises.
Is this a risk? I suppose it is. But the alternative is certain slow decline. Herbalist Bob thinks he can get me off supplemental oxygen, and maybe fix my allergies, and wouldn’t that be great?
The journey begins with a risk. A calculated, Vulcan risk.
Not wanting to spend too much time in one place, I got on a plane yesterday and boomeranged back to Puerto Rico. A lot of families with kid on this flight; I guess it’s a vacation week. Climbing out of Boston, I was treated to these views of Martha’s Vineyard and Nantucket.
Allysen and a friend were there to greet me in San Juan.
