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.
Yeah, right. The two weeks (feels like two months) since coming back to Boston have been a carnival of people working on the new porches, installing the new boiler, installing and fixing electrical stuff, and starting today at 7:30 a.m. putting new insulation into the attic. Oh, and did I mention hunching for hours over Quicken, pulling together a year’s worth of numbers for the tax man? God willing, by this time tomorrow, all that will be done, or mostly done. And then I’m going to leave it all behind to return to Puerto Rico! (This time for some actual leisure, and writing I hope.)
Here are some pix of the porch! Those round columns, by the way, are made of a resin-stone composite with a permanent finish. No painting required! And the railings are powder-coated aluminum. If there was one theme to this design, it was “low maintenance.”
It’s quiet here on my last full day in Puerto Rico (for this round). All our guests have left. Crystal back to L.A., which we hope hasn’t washed away in the rains there, and A’s cousin Vanessa and her husband Cesar back to South Carolina, via San Juan. The air here has turned intensely humid and muggy. Earlier, we had a brief wind-and-rain storm that made me wonder if I’d missed the memo about an approaching hurricane. Wish I’d taken a picture.
Tomorrow, I return to Boston, while Allysen stays to greet Jayce and her boyfriend who are flying down from Boston at the same time I’m flying north from San Juan. We’ll pass each other over the Atlantic. While I start dealing with house issues at home, Allysen will be working with a contractor she’s found to do some of the larger repairs needed here. (Cesar and I fixed a bunch of small things, including—long-time readers will recognize this—yet another patch on the fabled Ho Chi Dog Trail.)
I’m going to close out this chapter with various pictures from the visit. First, Crystal and Allysen at El Yunque…
An egret at the beach at Caña Gorda…
An interesting tree in the dry forest right next to the beach…
And an evening at a new discovery, a delightfully idiosyncratic Ponce restaurant, El Rastro. This is Vanessa and Cesar.
I’ll be back down at the end of February. Lots to do between now and then.
