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!

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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).

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.

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!

Joining a club I wish wouldn’t accept me as a member

Over the past few years I’ve been stunned by the number of people I know who are dealing with cancer of one form or another. I don’t know whether it’s due to arriving at that age where friends and colleagues begin to manifest these diseases, or if it’s part of a general trend caused by better diagnoses, or a result of the environment taking its revenge on the human race, or something else (though this report from the National Cancer Institute says that cancer incidence has been falling since the 1990’s). But whatever the cause, it’s been hard to watch people I know and care for suffering through the disease and the treatments.

Now I’ve joined the club of cancer patients myself.

A couple of weeks ago I went in for a routine visit to meet my new primary care doctor. He took a look at me and noted that I had some swollen lymph nodes in my neck which he felt were larger than is usually caused by routine viral events. He sent me down to see the ENT doctor, who took a look in my throat and diagnosed squamous cell carcinoma of my right tonsil which had spread to the lymph nodes. There is apparently a large increase in this type of cancer in males, caused by HPV infection.

That was the beginning of being sucked into the big cancer treatment machine – definitely an E-ticket ride! The good news here is that the University of Chicago Medical Center is one of the best places in the world to be treated for head and neck cancers, and they have a whole team of specialists in that realm.

The other good news is that they are confident in their ability to treat and cure this.

So last Monday I went in and had a biopsy which confirmed the initial diagnosis. But they saw no evidence of the cancer spreading beyond the tonsillar area. They also took out my left tonsil to see if there was any cancer present there – there wasn’t. But that gives me a perfectly good excuse to eat lots of popsicles and ice cream as my throat heals.

The not-so-good news is that I’m in for several months of chemo and radiation therapy. Friday we spent much of the day in consultation with the oncologists who did a very thorough job of outlining the treatment plan. I also got fitted for a radiation mask, which consists of a block of styrofoam molded to fit around the back of my head and a plastic mesh mask that clamps on and covers my face. It’s designed to keep my head completely immobilized when they give radiation (here’s a pic of some other guy in one).

Yesterday (Monday) I went in and got infused with some radioactive fluid and spent the day getting 3D images built up of my head, chest, and abdomen. That’s part of a study where they’re hoping to find better scanning sooner after treatment than the PET scan options typically used now.

And today the chemo starts. More later.