Hunkering down for the long haul

Got a close-up look on Monday at the creepy underbelly of last month's biopsy results.

In Monday's visit with Dr. B1, the head and neck doctor who has had to put up with me more than any other Kaiser provider, he handed a copy of the surgical pathology report from the July 31 procedure to me.

The headline news from that report —that no more evidence of cancer was found in me— was joyfully disclosed here almost as soon as I read it in an email from Dr. B1.

On Monday, Dr. B1 shared additional findings by the pathologist.

I didn't really learn anything new, but the terminology that was used in the report to describe my condition sounded so much scarier than I imagined. (If the pathologist who wrote it ever decided to leave Kaiser, I bet he could earn a lucrative salary from the GOP spinning the Obama health care plan to the electorate.)

According to the pathologist's report, "granulation tissue with extensive necrosis and inflammatory cell debris" was found on both the left base and the deep base of my tongue, and "bacterial colonies" were found on the left base of my tongue.

I knew that there was extensive cell damage resulting from radiation therapy on my tongue —I'm reminded of that every time I try to open my mouth— but the way I had been privately describing the situation was that my tongue simply had an "owee" and just needed time to heal.

"Necrosis" sounds like an arch-villain of Spider-Man, or a death-metal band opening for Marilyn Manson. And a cluster of bacterial pup tents on my tongue would give me plenty to be nervous about, but entire "colonies"?! I only hope that those bacterial Ben Franklins don't take steps toward full statehood.

The bottom line is that if my tongue is healing at all, it is doing so at an extremely slow pace.

After Dr. B1 and I reviewed the pathologist's report, he outlined the next steps for me in my treatment plan: another visit to the Radiation Oncology Department at the end of the month, more imaging studies and possibly more surgery.

So Monday's visit in the Head and Neck Department wasn't the victory lap I had hoped it would be.

For one, my fingers had been crossed that Dr. B1 would tell me that he would agree to begin divorce proceedings between me and my trach. Instead, it looks like I'm going to be saddled with my trach for some time. Dr. B1 doesn't want to remove the tube until a clearer picture emerges about what's happening with my tongue and jawbone.

"Wait and watch" were the doctor's orders.

As far as the cancer is concerned, Dr. B1 said that the risk of recurrence becomes very low after five years. That means I'm going to be having cancer heebee-jeebies well into President Obama's second term or President Palin's first.

Don't get me wrong. I'm still kicking my heels and flashing "V" for Victory signs about beating cancer, at least so far. As Dr. B1 reminded me on Monday, the challenges that I'm facing now are annoying but they are not life-threatening.

There's a huge chasm between life-threatening and quality-of-life threatening, and that gulf is my buffer zone against cancer.

To twist a cliché, this opera ain't over until the guy with the trach sings.

Star-crossed

I arrived way too early for the screening of "Passing Strange" at the Downtown Film Festival—Los Angeles (DFFLA) at the AT&T Center on Wednesday night. The movie was scheduled to begin at 8 and I was there at 6:30.

So I decided to just hang out near the entrance to the South Park high-rise and rustle through the newspaper while I waited for the doors to the theater to open.

I totally looked like a security risk to the festival organizers, who were running around in circles barking orders at one another. Because my face stings to the touch, I haven't shaved since Saturday and the high-profile trach that Dr. B1 gave me when I had my biopsy gives me the appearance of having a spear lodged in my neck, which I guess I do.

As if I didn't look suspicious enough already, I offered to serve as the designated coat rack for two friends who also arrived early but decided to get a bite to eat before the film. Their bulky coats, combined with my own vest, screamed "suicide bomber."

No film festival opening in Los Angeles would be complete without celebrities and the Downtown Film Festival was no exception. I smelled the first celebrity before I saw him. It was Seymour Cassel, puffing on a cigar.

Mr. Cassel and his date stopped just inches away from me, and the flashbulbs started popping. I should have stepped out of the range of fire, but I wanted to be first in line when the doors to the theater opened. I held my line near the red carpet and tried to look disinterested. (If this had been the Carnation Plaza at Disneyland and Mary Poppins and Bert strolled by, I would have been all over them with my Disneyland autograph book, but c'mon —Seymour Cassel?!)

During the excitement, someone snapped the picture below. I doubt Mr. Cassel was mocking my disability, but man, I would kill for a tongue with the range that his has.

Actor Seymour Cassel poses with guest Rebekka Redden at Passing Strange The Movie Opening Night 2009 Downtown Film Festival at the AT&T Center Theatre.

Meanwhile, back on the HIV front . . .

If I had teeth, they would have been clenched tight when I clicked on the email I received from Dr. B1 early Wednesday morning.

Results from last Friday's biopsy were promised by Wednesday and I wasn't eager to get any bad tidings from my doctor. But even as I opened the email and read the words "Good news," my reaction fell short of unbridled joy.

Dr. B1 was telling me the best news I could have possibly expected to hear, but there was a cloud beneath that silver lining.

The night before, while poking around in my online medical records at Kaiser's member website, I saw that my latest HIV lab results were available. I clicked on that email and scrolled through the numbers. They didn't look good.

As I've been grappling with this cancer offensive, it looked as if my HIV had been running amok. According to the lab results posted online, my CD4 count had taken a deep nose dive, plummeting to 80 from more than 400 just seven months earlier.

I nervously clicked out of the lab results and sent a message to HIV provider: "My HIV numbers don't look very good," I wrote. "What do you think?"

The next day brought the good news about the biopsy, but my HIV situation weighed heavily on my mind.

Later that morning, my HIV doctor sent a reply to my email: "Your HIV is perfect," he wrote. "The HIV viral load is less than 48 copies, indicating complete suppression of the virus by the medications. Your overall 'infection fighting cell' number (WBC) remains slightly below your baseline, likely due to a residual effect of the chemotherapy. This is normal. It is not by any means at a critically low level. Because of your lower WBC numbers, your absolute T cell number is lower. However, the percentage of T cells (19 percent) is virtually unchanged from the values in January (18 percent).

"In other words," my HIV doc concluded, "your HIV is exactly the same, still doing great."

The lesson here is to let my doctor interpret my lab results before I leap to any conclusions.

So with HIV laying low, and cancer apparently having flown the coop, I can concentrate on my recovery while watching the undetectables, to paraphrase that doctor of rock 'n' roll, Elvis Costello.

It may still be some time before I can shed my trach and G-tube and talk and eat and drink through my mouth again —and there remains a possibility that the damage caused by cancer and radiation will be permanent— but I've come this far and I'm prepared to go the distance.