Da BLOG

The number "zero" is a wonderful thing. Introduced formally to the world in the poem Brahmasphuta-siddhanta (The Opening of the Universe) written by ब्रह्मगुप्त (Brahmagupta) in CE 628 it has done more than its share of work to make the world a better place.

And in particular, when reported as the result of a PSA test zero is a very good number indeed.

So: Happy!

Time certainly flies when you're having fun!

Since last I wrote, nothing of note has happened with respect to T11 or the much-lamented and certainly missed prostate. But the hair is back with a vengeance, as you can see to the left.

And curly, no less! These pictures are from the 20th ACM Conference on Computers, Freedom and Privacy that we hosted at San Jose State in June (see www.cfp2010.org for details, streaming video, and more). The conference was quite exciting, and ended up crafting and unanimously adopting a Social Network Users Bill of Rights that is getting quite some traction (have youvoted?)

This week I'll be visiting with the good dr. Srinivas for the six-month follow-up. Blood has already been drawn, and on Wednesday we'll score the results.

I have now been (bone-)scanned, (CT-)scanned and MRI'ed, not to mention that blood has been drawn. All for the three-months-after follow-up and check.

Without shilly-shallying, here're the results:

PSA: Undetectable
Alkaline phosphatase is a bit elevated
T11 on the bone scan: Lit up like a light-house ("There is stable, increased uptake at T11.") ("increased" means "elevated", in this context)

T11 on the CT-scan: "Stably sclerotic" (sounds like somebody's state of mind, doesn't it?)

The keyword here is "stable." The hormone, radiation and chemo treatments have not affected the activity in vertebrae T11. If it were a metastatic prostate cancer development it would have been much diminished by now (due to the hormone treatment), and if it were small cell carcinoma then it would either be diminished (chemo) or increased across the last nine months (if the treatments did not work).

The consensus now is that T11 demonstrates a version of Paget's disease of the bone (an out-of-whack bone remodeling process), and that is the far superior alternative to metastatic cancer.

So - YAY!

The next step is to wait for three months, and check the PSA again (it is too early for the low PSA reading to be significant).

Today: Cheers!

Bonus point: The good doctor thinks my curls are going to stay with me permanently!

Consider this: 35 degrees centigrade/95 degrees Fahrenheit in the shade (a cool winter day in Rajasthan). Then add a good hormonal hot-flash...

Life is returning to what passes for normalcy - plenty of things to do at work, with a side trip to India (for the IACC conference and relationship building).

Since I'm the dude, I spent a couple of days at a dude ranch in India last week, specifically in Rajasthan: Doing the dude'ish thing, there was a camel involved:

Today is a bit scary, though. I had an MRI a few weeks ago, checking the status of our friend, T11. Nothing new there, it still looks strange, but no more so (or differently so) than the last time. Today we are doing a bone scan. The result of a previous one was what started this whole T11 journey (panic, chemo, radiation) in the first place, since the scan checks on the metabolic rate - a high rate can be an indication of a cancer, and thus the scare.

Cross your fingers, folks! Please.

Time flies like an arrow! (And as the corollary says "Banana flies like oranges." Make of it what you will.) Let's marvel at the progression:

At the height of contemporary elegance:

But then what happens? Before you know it - there's hair! Lots of it!

So - feeling feisty: Tomorrow I am off to Atlanta for some work on an International Trade Commission (under the WTO) case, and then off to a conference in Patiala, India.

Cheers (he sez)!

With the winding down of the treatment phase (the last date with the linear accelerator is tomorrow, the 24th) I've had a series of consultations with all and sundry of the medical profession. I have already shared the perspective of the oncologist (see the previous note), and lately I have met with no less than three radiologists.

And it all sounds pretty upbeat - we have been talking quite a bit about statistics and scenarios, and the consensus is indeed that being cured is a pretty likely outcome from 2009. And even in the case of a residue hanging around the current treatment methods are such that a cancer of the prostate is considered more akin to a long-term chronic disease dealt with through continuous treatment, rather than one of the keel-over-and-die disasters. In other words, under most of the scenarios we're looking at a planning horizon of decades.

At least - so sez the doctor.

And who am I to argue!?

The good news is that a PSA above zero would be really bad news, and with a PSA at zero we avoided that.

The bad news is that a PSA at zero at this time is not particularly newsworthy. With the hormone treatment and the surgery, it would be extraordinary for the PSA to be anything but zero, regardless of the state of the cancer.

So it is back to biting nails again on that score.

In the meantime the Chromogranin A (CGA) is still elevated (at 605, normal is in the 200s), but Dr. Srinivas has decided that she finds it meaningless in the current context (which seems to be the position of Dr. Hancock, the radiologist, as well). (Though the literature we have pawed through w.r.t. CGA is pretty scary...) And for comfort, some of the write-ups indicate that the CGA can be elevated if the patient is taking protein pump inhibitors, which I am (Nexium). The short of it is that Dr. Srinivas does not think it worth while to drop off the Nexium just to see what that does to the CGA. So no nail-biting there.

Where are we, then? The radiation treatment ends on December 24 (Merry XMas!), the hormone treatment is on for another three months (and then tapers off for another three months), and then the treatment plan comes to an end. We're going to check the spine again in January (an MRI), and do a CT and bone density scan in March. The big test will really be the PSA test in about six months.

It is essentially a matter of waiting and watching, staying alert for indicators of ill-behaved body parts. If ever there were a recipe for hypochondriac behavior I'd say this is the one!

So I am of decent cheer - the overall odds for having been cured are still OK.

I talked with a physician at my clinic today (about other things), and in passing she mentioned the PSA results from last week's blood test.

<Drumroll, please...>

The PSA was undetectable!

Which is exactly where we want it to be. All my nail-biting can now focus on the CGA results (she was not familiar with the meaning of the CGA test, and certainly not well enough to interpret the result).

Come Thursday I have an appointment with my oncologist, where that mystery may be revealed. Please keep your fingers crossed, folks!

I'd like to recommend a few books that I have been enjoying lately.

The latest one completed is "Out Stealing Horses," a lovely gift from Nona and David. I promised Kathy not to reveal anything about the book to her, so I really cannot say much beyond the recommendation that you get a copy, sit yourself down and enjoy it. Then we can talk about it away from Kathy - or after she's completed her journey through it. Btw., the New York Times review of the book is totally lame, and the Wikipedia entry is way off base. Just read the book.

Prior to that there was Shantaram (recommended by Therese), a semi-autobigraphical story about an Australian fugitive from prison who settles into the slums and seedy underworld of Mumbai (among other things). The description of Mumbai rings very true, though the books is quite self-serving in many ways, and as one reviewer put it: "...be prepared to knuckle down through some of the most excruciatingly horrid abuse of language I've seen in print for some time." The New York Times is far more favorably impressed, and I (obviously) quite enjoyed it. But then I have a high tolerance for tortured prose (just consider, if only for a moment, my own verbiage).

In-between novels I have had the pleasure of two collections of short stories (thanks, Stacy!), the 2009 PEN/O. Henry Prize stories and a collection of 50 Great Short Stories. Together they comprise a fine collection of contemporary and classic short fiction, perfect reading for periods of diminished attention span (such as during chemo or while waiting for doctors).

Being nuked every morning by a Varian Clinac 21EXLinear Accelerator sounds pretty awesome, doesn't it? And there should at the very least be a big KA-BOOM! at some point.

There isn't...

The reality is far more mundane (fortunately). The therapist fetches me from the waiting room, we chat about the previous 24 hours of our respective lives as I find my position on the bed and they position me w.r.t. the targeting tattoos (remember those?), and then there is a sequence of seven cycles of: the machinery positioning itself, a lot of whirring culminating in a warning buzzer going off, and then we do it again. Altogether about 15-20 minutes, and quite relaxing. Certainly no sense of drama.

The whole thing is primarily tiresome - quite literally, as I am more easily fatigued these days. But now I am past the half-way mark, the end is in sight and we're soon done!

This year New Year's Eve will truly mark a transition and a new beginning!

Never mind that the likeness to Chia Pets has been mentioned by a number of people - my hair is returning! A fine peach fuzz sprouting everywhere one could hope for across the northern hemisphere of the globe of my head, ever-so-tempting for people to reach out and touch, and even to give it a stroke or two (all of which is very nice and friendly).

This weekend Kathy and I paraded my hirsute top all the way to the peak of Mount Saint Helena above Napa. It was a glorious day - blue sky, wonderful fall colors in the vineyards of Napa, a snowy Snow Mountain to the north and a glimpse of Mt. Lassen floating, cloud-like, on the horizon.

And there was food. And wine. And good times.

...and 'round we go, again.

Current thinking is that vertebrae T11 is not cancerous. The jury is still out on what it actually is, and to what purpose it shows up so abnormally on the scans. But (I have been told), the consensus now is that it is not cancer. The abnormality is deemed to be too abnormal to be a normal cancer. To be precise, it is fibrous rather than globular. And there you have it.

Which is fine with me :-). The upshot is that we'll not zap it with the linear accelerator.

The radiation treatment itself is going well: Every morning at 8:45 I am greeted with joy by the two nurses, get zapped for 15 minutes and go on my merry way. Repeat for 35 days (weekends exempted).

It is a little tiring, as it is a bit like running a low level fever all the time. Which is not exactly the end of the world.

In summary: Life is good.

The ladder is working well, supported by the generous hands of family, friends and colleagues. Two weeks ago Kathy and I did our first hike (well, stroll in the park, rather) in months, a delightful stroll around Phoenix Lake in Marin County, with the fresh wetness of a recent fall rain (and we do need water, after years of drought), the air rich with fragrances and the cloudlets ("foggies"?) chasing each other up and down brook-burbling canyons.

Then, the weekend after we did our default short hike - from Portola Valley up to Windy Hill and down again, a fine zig-zag gently rising through layers of varied forest to the top of the ridge, then a rapid descent back to the valley for a swift return. At the top, when timed right (and we do) we get the view of the sunset through the ocean clouds/fog/clear blue sky above the Pacific on one side, and on the other we enjoy the twinkle of the windows of the Bay Area catching the last rays of the sun, reflecting them back to us. A fine place to have a small meal and a beer.

My aerobic capacity (never that great in the first place) is nothing to boast about, but at least we are out there, and in good enough shape to enjoy it.

This weekend was at a different venue: I was at the semi-annual meeting of the TRUST Center, this time in Washington DC. DC is new territory to me, I have been there only once before. This time I had a few hours for sight-seeing and spent them at the Smithsonian National Air and Space Museum.

For a techno-romantic such as I this is a particularly wonderful spot on the earth. To be able to view the first space capsules, to behold the actual airplanes that made history is magic. So is the display of the ICBMs and other weapons of mass destruction on display - dark magic indeed, and a magic that is unfortunately still alive and well in the world (though sadly overlooked amongst the more mundane evil of terrorism and conventional warfare).

So - there you have it: Life is pretty good, the body is trucking along (though to the sound effects of loud tinnitus) and next week I am starting my regime of very localized sun burns.

Oh, yeah - I am running hot these days. The radiation treatment has a hormone component, and a side effect is the occasional hot flash. Every so often I turn all ruddy and warm, usually at times when it is maximally inconvenient, of course. I see this as an exercise in gender solidarity, increasing my empathy with those genetically afflicted with hot flashes. Of course, unlike women I cannot resort to a hormone treatment to reduce the effects, so I'll just have to ride it out (and it is not that bad, after all).

...since the hole is a deep one. But I can see daylight from here.

The last (the last!) round of chemo finished some 10 days ago, and it was a lulu. Pretty much flattened me for the week after, and I think my two marbles were reduced to one. And that one felt lonely...

But that was then, and this is now; a week later and I am at that exhilarating stage where every day is noticeably better than the previous one. Never mind the tinnitus (still shrieking at me), and the second-week side effects that I have experienced before (mostly skin issues - reducing my ordinarily ever-so-handsome self to a somewhat unsightly mess), life is feeling better.

And that is not to be sniffed at.

There is still stuff to do and vertebrae to zap, but that's for another day.

Today is a fine day.

There have been requests for pictures. Specifically - what does the poor fellow look like now?

And here it is, folks:

(The author is the guy to the right.)

(I have been told that it will all grow back - and curly!)

...stop digging.

Unfortunately chemo is all about digging deeper, so there is no chucking the spade. Last week was the third cycle, with one more to go. Fortunately the pattern is well established: Enjoy three days of drippy leisure, suffer through four days is misery, then bounce back, looking like a hero.

The four days of misery were a tad more miserable than the previous go-'round, though knowing that it comes to an end certainly helps. The only real concern right now is the continuous 60 Hz shriek in my ear - the tinnitus has gotten really awful and I have lost my bass register: The world sounds like something one could hear from an over-amplified old tube radio with a bad reception. Which allows me to enjoy music the way they did of old: Not so much through the direct experience of the music itself, but rather as a tool reminding me of what the music sounded like as I listen to the scratchy replica.

And now there is only one more chemo cycle to go - then done with that. I cannot envision nor imagine myself in the position of people who do chemo for months and years on end, and I am very happy I don't have that to look forward to.

There was another MRI last Sunday, to revisit the T11 issue (it seems there was some unhappiness with the quality of the previous scan). I spent another hour in the tunnel, and found it restful, a place suitable for a quiet nap while the magnets kept whizzing 'round.

Today we visited with Dr. Hancock, the radiologist, to get the reading.

The good news? The new MRI showed exactly the same as the old. So if there were cancer in T11, it is an wonderfully sleepy one.

The bad news? The new MRI was no better (or worse) than the previous one. T11 is still veiled in mystery, and nobody can figure it out. The optimists (such a I) like the conjecture that it is a small compression fracture from youthful exuberant bouncing along the blacktop during one of my motorcycle accidents. But then there is the FPGA light-up (indicating high levels of metabolic activity), consistent with the bad stuff.

The upshot: There is now a reluctant consensus to simply whack T11 on the off chance that there is something to whack there. Starting October 28 I'll spend an hour or so at Stanford getting a very local tanning treatment.

Did I mention the tattoo? No? As part of the process I will gain no less than three tattoos! They declined my request for a butterfly motif, though...

Barreling down the highway in my nifty red sports-car, Zappa riffing on "Sexual Harassment in the Workplace" (loud. LOUD!), a piece that rolls powerfully, unstoppably, with the inevitability of a freight train passing Nipton, it is time for another academic year to commence.

And - two down, two to go. Pulling out of this round of chemo was not much worse than the first time 'round. A bit more tired, but the overall set of side effects still well within the manageable. Whatever nausea I experience is more likely to have been caused by the tax-payers of California ("More services! No taxes to pay for them!") than the medication.

Cheerio!

I paid a visit to the hair person this afternoon (nothing like a nice head massage after 8 hours of drip...drip...drip accompanying a viewing of the classic movie Chūshingura (recommended) after having enjoyed some good short stories (thanks, Stacey!)).

The good news: The hair is not coming off in patches (yet).

The bad news: There wasn't that much to work with.

The conclusion(s) (there were highly divergent ones - no consensus):

- I have finally achieved the maturity of middle age, buzz haircut and all

- I have reverted to the visual status of "rampegutt" (translation available upon demand)

I knew I was a roundhead (horizontal projection). I did not realize that there was a certain bullett-like quality (vertical projection). Now I know...

Shedding more hair than a labrador retriever coming out of winter it seems clear that I am heading for that extreme macho look - the billiard ball hardness of a pate shorn of all vegetation.

Aside from that little detail - things are going well:

Nausea? None.

Mental wooziness? No more than normal.

Feeling good? Feeling GOOD!

Let's cross our fingers for infusion cycle #2.