Recovery is a b*tch!

When I finished radiation and chemo treatment they told me that I would continue to feel worse for a couple of more weeks while the radiation and chemicals continued to work their havoc on my body, and then in the third week I would start to feel better. What I internalized that as meaning was that after three weeks I would be back to my old self. Well, the first part (feeling worse for a couple of weeks) was certainly true. My wishful interpretation, of course was far off the mark. I’ve continued to have weird symptoms even as the sores in my mouth and throat have healed – my mouth is pretty dry as a result of the treatment beating up on the salivary glands, my sense of taste is really strange (salad still tasted really bitter to me), I’m cold most of the time (which is probably related to my having lost over twenty pounds during treatment – I now weigh less than when I started college!), and, since weaning myself off the painkillers a couple of weeks back, I’m not sleeping worth a damn. The doctors, however, are quite pleased with the progress, so that’s good. And as most of you know, my first post-treatment scan showed no sign of any disease, which was fantastic news! They don’t call you cured until you have three years of clear scans, but so far, so good!

But worst of all is the lack of energy – just walking a mile or so feels like real exercise. I’m used to being in pretty good physical shape, and the thought of having to work hard at gaining all that back again is a bit discouraging, though I know it will come – but NOT SOON ENOUGH!

Michele made the wise observation last night that there’s a reason they call people who’ve been through cancer treatment “survivors” – it’s like a war has been waged, and unfortunately it’s your body that’s been the battleground.

But today was my first day back at work (half-time for a few weeks) – and it felt great to be there and see everybody. On the way back!

RIP Duck Dunn

It was sad this Mother’s Day morning to learn that Duck Dunn died yesterday at the comparatively young age of 70 while touring Japan with Neil Young.

Duck was one of the seminal R&B bass players in the 60s, playing on many of the hits out of Memphis’ Stax records behind Otis Redding, Sam and Dave, Albert King, Carla Thomas, Eddie Floyd, and many others, as well as being one of the members of Booker T and the MGs.

Duck’s style was all about finding and anchoring the groove. He was the epitome of that magic bassist who could make a song really happen by laying down the simplest of lines with impeccable timing. Duck was a huge influence on me and most all the bass players of my generation.

Back in ’79 when I was working for Dire Straits I heard Jimmy Iovine and Shelly Yakus talk about how they just couldn’t pull the groove together while mixing the song You Tell Me for Tom Petty’s Damn The Torpedoes album. Duck wandered into the studio, took a listen, and asked if he could take a crack at laying down a bass track. The resulting first take track pulled the whole tune together into a sort of Born Under A Bad Sign kind of groove.

Here’s a great video with Duck and MGs backing up Sam and Dave in Europe – these classic songs have almost become cliches from having been played so much, but was there ever a badder soul groove than this?

And here, from the same 1967 tour, is the same band backing Otis Redding on the great Try A Little Tenderness.

Duck, you will be missed!

Last week of treatment now underway!

Back in the hospital again for my last week of inpatient radiation and chemo.

Last week at home was probably my most down point yet. My mouth and throat got progressively more sore over the week and my mouth was very dry, all of which combined to make eating a real chore. My energy is also very low, so I spent a lot of time sleeping.

My concentration has also been really fleeting – it’s rare that I can get through reading an entire page without losing the thread, if not dropping off to sleep.

Luckily, we were fortunate to have good friends around for most of the week. Jody was out from D.C., and Ed came in from Seattle – a huge shot out to both of them for all the help they gave us in addition to the invaluable friendship and emotional support. My cousin Wendy was in town from London to celebrate her mom’s 92nd birthday, so we got to see both of them, My old friend and klezmer-mate Brad breezed through on his way to a family bar-mitzvah, and Bryn came over and hung out for an evening. All that combined to make it feel not so bad, and sped the week along. By Sunday morning I started to feel a little better, and Michele and I got out for a nice walk along the lake before I had to check back in.

Now I just have to get through this week and then I can start the recovery process. I’m told that the first two weeks after treatment ends can be hard ones, but that people generally start to feel a little better three or four weeks out.

New music I brought to check out this week:

Robert Glasper Experiment, Black Radio
Esperanza Spalding, Radio Music Society
Jack DeJohnette, Sound Travels
Punch Brothers, Who’s Feeling Young Now

If you’re in the neighborhood, come on by and visit! I’m in Mitchell Hospital, room TS-661.

Monday update.

After a couple of days of pumping me full of antibiotics and fluids they decided that whatever had caused the fever had passed and the sent me home.

The rest of the week was about learning the message of pain management. I’m used to thinking of pain as a transient phenomenon that will go away in some relatively short time. But in my current situation the pain will not go away until the treatment is over, so the trick is to learn how to live with it. The combination of narcotics (oxycodone in my case) and topical anesthetic mouth rinses every few hours make it possible to keep the pain at bay, at the cost of being rather spaced out (the docs made a strong point of telling me no driving while using oxycodone).

Yesterday (Sunday) I checked back into the hospital for the third week of the combined chemo/radiation treatment (out of five total – getting there!). I wasn’t feeling great when I checked in, and sure enough it turned out that I had a fever again, along with some low blood counts. I spent last night getting pumped full of more antibiotics, idly watching snoozing through the Oscars (Billy Crystal again?), and once the fever had come done they started giving me a couple units of blood. This is the first time I’ve ever had a transfusion – there’s something a little creepy about the idea, in a vampirish sort of way, but I’m trying not to dwell on that!

Hopefully they’ll get me back within normal ranges this morning so they can start the chemo and radiation today. And I’m hoping that having missed a night of chemo doesn’t mean I have to spend an extra night in the hospital before going home at the end of the week. In the meantime, I’ve got some work to do, season 1 of Portlandia to watch (as well as the season finale of Downton Abbey which I missed while in the ER), and some new tunes to listen to (Miguel Zenon’s Alma Adentro, Oz Noy’s Twisted Blues, and Lee Morgan’s Cornbread).

Back to the hospital

It sure was nice to get home on Friday, but over the weekend I felt progressively worse. By Sunday afternoon I had developed a fever of 100.2 and started puking (for the first time since starting cancer treatment, I’ll have you know). We called in to the docs and they told me to come on down to the ER.

After some blood work and X-rays, the best guess is that I’ve caught some common virus unrelated to the cancer treatment. So they kept me in last night and tonight while they pump me full of fluids and a variety of antibiotics. The fever and nausea appear to be gone, bit my gut still isn’t back to par. Hopefully tomorrow I’ll get to go back home again so I at least get a few days before I have to check back in again on Sunday.

I’m waiting for them to bring on the DNA nanobots!.

In the meantime, my dad arrived from Seattle tonight. It’ll be great to spend a few days with him this week!

Back from week 2 of chemo/radiation

Back home last night after the second week of the combined chemo/radiation treatment. Another long week in the hospital. Why is it that it’s impossible to get any rest in a hospital? They are not quiet nor restful places. At least this week I had a room to myself, which made it a little easier to get some work done including attend meetings by phone and meant that I didn’t feel bad when having visitors chatting me up.

I’m now exhibiting the side effects that were predicted – sores in my mouth and throat, lots of mucus being produced by my body as it tries to fight off the assault (one of the PAs said “you’re going to feel like you have a sinus infection for the next few months”), dry mouth, and general fatigue and loss of appetite. The goal is to keep eating through all that – they’re recommending between 2000 and 3000 calories a day. That’s hard to do when you can only eat soft, non-acidic, bland foods. The recommendation from the docs is to take pain meds (oxycodone currently) an hour before eating – they say that they can’t cure the causes of the pain during treatment, so the only approach is to mask the pain long enough to cram some food through. Of course the pain meds have their own issues – wooziness, constipation, general space brain conditions. I’ve got more pills than any one man should have, and it’s getting hard to keep track of them.

But I have to say that I’m in much better shape than many of my fellow patients – perhaps because of the smaller radiation field being used as a result of the success of the initial chemo in attacking the tumor. Hopefully I’ll recover some of my elan over this week at home before I have to head back in for the next round! My dad’s coming out this week, which will be great. We’ve had a steady stream of visitors from hither and yon, and it’s wonderful to get that kind of support from all our friends and family. And my wonderful colleagues in Web Services have been sending a steady stream of humorous postcards which really lighten the mood. 

Meanwhile I’m looking forward to this being over and starting to think about warm weather bike riding – If you’ve got favorite rides around Chicago or the area, post in the comments!

 

 

Jacking into the chemical network

Today Tuesday I had one these implanted in my chest

PowerPort Duo Implantable Port

It’s under the skin, and accessed by poking a needle directly into either of the two ports. That allows them to deliver chemo right into my body without having to stick me with IVs all the time.

I’m reminded of William Gibson’s jacking into cyberspace from Neuromancer, except instead of connecting directly to a digital network I’m connected to a chemical one. Who woulda thunk?

Three radiation treatments into the week and it seems to be going ok. No noticeable side effects so far, but they say that usually starts a few weeks in. We’ll see how it goes.

Starting radiation with good news on the cancer front!

Today (Sunday) I’m off to check into the hospital for my first week of combined radiation and chemo. I’ll be inpatient until Friday evening, getting radiation twice a day and a constant infusion of 5FU and Taxol. This drill is scheduled to repeat every other week for five repetitions. I can’t say that I’m looking forward to it.

The good news this week was that on the most recent CT scan the doctors were unable to find any sign of the primary tumor at all. The chemo has apparently melted that tumor away, which they say happens in about 10-20% of cases. That will allow the radiation area to be smaller and more focused, which should help minimize the side effects.

Our friend Mauri is here from New York this week, so she’ll be keeping me company in the hospital while Michele is working and Mo is at school. And I’ll keep working remotely in between getting zapped.

We went to see the Descendants last night – a terrific, sad yet hopeful movie. Great acting! Now I’m arming myself by downloading TV episodes, podcasts, and music to take to the hospital. Along with the huge pile of books on my bedside table (not to mention all the work I’ve got on my plate), I should be able to occupy my time in the hospital and at home in the coming weeks.

Cancer Update

I’ve now had three chemotherapy infusions.

The first one, on December 20, was an all-day affair that involved three different chemicals (Cetuximab, Cisplatin, and Taxol), along with an assortment of anti-nausea drugs, benadryl, and steroids.

While I felt fine immediately after the treatment, the next week or so was mostly characterized by tiredness and lack of focus, along with some minor stomach issues.

The two treatments since then have only been one-drug affairs (cetuximab) and have gone better, though I did develop a bad acne-like rash, which is one of the common side effects of that drug (since treated with antibiotics).

I’m also participating in a clinical trial that is evaluating the use of Everolimus in treating squamous cell tumors in the head and neck – so I’m either taking that or a placebo every day.

I did manage to make it out to Seattle for a long New Year’s weekend between treatments. It was great to see everybody, and especially to help celebrate my father’s 90th birthday with the assembled family (though I missed the family trip to Semiahmoo, which was too bad).

Things have been busy at work, as I try to hand off most of my operational responsibilities to colleagues to handle while I’ll be mostly out of the office during the upcoming combined radiation and chemo treatment, which starts January 29.

I am tremendously grateful for the willingness of people who are already very busy to take on the extra burden – thanks to Byron, Tom, Klara, and Alex! I’ve also been working out with Klara a bunch of tasks I can continue to work on whether I’m in the office or not – all very interesting work where I can continue to contribute even if it’s remote. I am really bummed out to be missing this coming week’s CSG meeting, though – it’s a great set of topics this time and I’ll miss seeing the gang.

I’m heading in for another full-day chemo infusion on Tuesday (Jan 10). We’ll see how that goes!

2011 Favorite Listening

Here, in no particular order, are my choices for the 2011 releases that I keep coming back to.

tUnE-yArDs – WHOKILL

Merril Garbus weaves her African influence, her loop boxes,  and her DIY spirit into something totally new and compelling. A big, bold voice with something to say.

Gillian Welch – The Harrow & The Harvest

I didn’t see a lot of live music in 2011, but Gillian Welch and David Rawlings in Chicago was a real highlight. This album is full of great songs that sound as if they could have been written any time in the last 75 years.

Deep Blue Organ Trio – Wonderful!

Soulful groovin’ organ trio from Chicago, playing Stevie Wonder tunes with fresh new interpretations. Jazz comfort food!

Fountains of Wayne – Sky Full of Holes

I’m a sucker for intelligent, literate pop music, and this filled the bill this year. Raymond Carver meets the Ray-Beats.  Recommended for fans of Squeeze.

James Farm

A terrific new quartet with rising stars Joshua Redman on sax and Seattle native Aaron Parks on piano. Great compositions and thoughtful improvisation. Take a listen even if you think you don’t like jazz.

Larry Goldings – In My Room

A lovely, contemplative, (mostly) solo piano set from Larry Goldings.

Miles Davis Quintet – Live in Europe 1967

Miles’ great quintet captured at the height of their power – 3 CDs and a DVD. One of the high water marks in all of jazz.

Bernstein Goldings Stewart – Live At Small’s

Another fine example of the modern organ trio. This long-standing grouping plays empathically together.

Ry Cooder – Pull Up Some Dust and Sit Down

Who better than Ryland P. Cooder to take on the role of Woody Guthrie for the 99%?

Sunna Gunnlaugs – Long Pair Bond

Two years in a row for Icelandic pianist Sunna Gunnlaugs on my list. This record rewards repeated listening!

Raphael Saadiq – Stone Rollin’

The best of new soul, where Raphael transcends the retro act to produce a new and joyous sound.

The Decembrists – The King Is Dead

In which Colin Malloy and company leave the pretension behind and make great rock tunes.

 

Just getting into:

Youth Lagoon – The Year of Hibernation

Van Hunt – What Were You Hoping For?

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