wujcik.blog

Happily, the chemotherapy seems to be continuing to work. Unhappily, between the latest round of chemotherapy, and the hardships of my Michigan trip (cancer boy isn’t used to to the cold and snow anymore, and clearing out my storage unit, in spite of the army of friends helping was three days of pretty hard work in sub-zero temperatures), I got knocked totally flat to the point where I’ve been doing not a whole lot other than sleeping the last week.

There’s a great webpage put up by Kevin Siembieda, who was the Toastmaster for the evening, about my epic 57th Birthday Party in Detroit, along with some wonderful pictures: http://www.palladiumbooks.com/press/erick_b-day.html

Erick (San Rafael, California)

BILIRUBIN, TOTAL: 0.4
Normal: 0.2-1.3 mg/dL
Collected: 1/19/2008 2:30 PM

For those of you keeping score on these things, this is a sign that my liver is responding with astonishing speed to the ‘aggressive’ chemotherapy. Just seven weeks ago the Bilirubin was a horrific 3.4 (and believe me, it didn’t feel good). Now I’ve got a number (0.4) that would be happy in a person half my age. I’ve got a couple of other test results that aren’t quite so rosy, but my health professionals assure me they’re all improving enormously, and that the chemotherapy is definitely a success. What can I say but, ‘cool,’ and I’m happy to be looking healthy!

Again, I really want to thank everyone for sending so much positive energy in my direction. I feel like I made a very lucky ’savings throw,’ but I don’t want to discount all the prayers that went into tipping the dice in my direction!

Speaking of role-playing metaphors, I’ve been lucky enough to be Game Master three times in the last week. Twice for a super-secret play-test where I work, at Totally Games.

The other role-playing event was Wednesday Night, at the GameScape game shop in downtown San Rafael, California, with six incredibly talented role-players, including the store owners and operators. I threw then an interesting challenge; to each create a character who is older than they appear, who would be introduced on New Year’s Eve, 1899, and to also invent two abilities for the character that ordinary humans do not possess. Each of the players came up with awesome characters, incredible backgrounds (everything from a wayward time traveler to an immortal Native American, from a eternal vagabond to an 18th century drug lord, from a Fairie-abducted Medieval Lord to a beautifully twisted Southern Belle) and wonderfully well composed eldritch talents. It was my pleasure to meld all this into a (somewhat) coherent storyline. My thanks to the players; I’m really looking forward to our next session, set New Year’s Eve 1924!

Erick (San Rafael, California)

I’m coming to discover my own personal pace of chemotherapy. It seems that the day following, likely because of the use of steroids in the overall mix, I’m strong and high energy. Unfortunately, the following three days are marked by weakness and a non-stop need for sleep. The treatment was Monday, and it wasn’t until midnight Friday that I felt myself recovered to my usual energy level.

Happily the weekend was marked by a visit from old friends, down from the Seattle area, and Kate and I had joyous times (and meals, yum!) together. Sunday was even better since I had a chance to try my new ‘Theory of Everything’ role-playing experiment. Awesome game, mostly because the players were aways a couple of steps ahead of the Game Master, creating a truly remarkable set of theories (based on entirely new classes of particles, including ‘Entropons,’ ‘Observons’ and ‘Enigmons’). Thanks guys! See the picture for the whole group assembled.

Erick (San Rafael, California)

Monday, January 7th, 2008 was the date for my second “aggressive” chemotherapy session, and it started with great news.

First, it seems that the first session was a success. Epic news considering that the expected rate is something less than 20% effectiveness (and even less for the rare form of cancer they finally diagnosed from my biopsy).

Second, the blood tests indicate that my liver is back to operating within accepted norms. So:

BILIRUBIN, TOTAL: 0.8
Normal:    0.2-1.3 mg/dL
Collected: 1/7/2008 10:36 AM

Since the numbers were getting better even before the first chemotherapy, it seems that all the well wishes, positive thoughts, prayers and meditations of my loved ones must be having an even greater positive effect. Thank you all!

Erick (San Rafael, California)

Kate and I are back after a phenomenal trip to Asia!

First to Hong Kong where we spent happy, happy days with Sara, David and eight-month-old Tristan (aka, ‘Bean,’ Kate’s great-grandson). Getting to Shanghai required the logistics of scoring (1) extra pages for my passport, which now bulges like an over-sized little book, and (2) visas for visiting Mainland China (not possible without the extra pages in the passport).

Various people had urged me to seek out advice and possible treatment from Asian medicine while I was visiting China. I didn’t have time to do any searching, but in three instances, the world was kind enough to bring wonderful insight to me. The most spectacular and serendipitous was when I visited my friend Roy Horan on New Year’s Day, and was able to have an intensive one-on-one session with Lodreu Rabsel Rinpoche, an initiate of Tibetian Buddhism, from Nepal. as you can see from the following picture:

Of course, the most powerfully curative experience was being crawled over and played with Tristan (aka ‘Bean’):

Also wonderfully curative were spending time with all my wonderful friends and former students, at various times and places, but especially at two memorable meals; a lunch on Wednesday at Hong Kong Polytechnic University, and a dinner at the amazing Yang’s Kitchen in Shanghai (both times nobody had to ask if I had a problem with my appetite since I was eating everything in sight!). At the Thursday night dinner in Shanghai, my good friend Louis Tremblay took some spectacular photographs (see picture at top), and was kind enough to post them on his website online. Here’s the link: http://www.pbase.com/ltremblay/erick_wucjik

We made it back in time for my second round of chemotherapy here in California. The next trip is scheduled for Michigan, to take place right after my third chemo, arriving by January 24th in Detroit.

Erick (San Rafael, California)

The big surprise was that it was so comfy! Since I had been up half the night working on e-mails, projects, the blog and so forth, I found it incredibly easy to sleep. Especially since the staff catered to my every wish, happily bringing me warm blankets, water, cookies, and answers to my every question.

It took five hours total, starting with the insertion of the i.v. shunt (my right upper wrist this time; and the nurse was happy that I had a lot of prime spots up and down my arm), and proceeding to two hours of ‘hydration.’ Basically just filling me with enough fluids to make sure the chemotherapy chemicals are most effective. Then a combination of anti-nausea and steroid medications (I was also given the first of three daily ‘by mouth’ anti-nausea pills). The third hour was Cisplatin, mixed with what seemed like a full liter of fluid, and the fourth and fifth hours were used to inject the most specific Pancreatic Cancer drug, Gemcitabine.

Before I was released (with the cutting of my hospital wristband), it was time for another set of blood tests.

Happily, as I was informed by my primary physician later that day, one of my main liver disease markers, bilirubin, had gone down dramatically, from 3.2 this past Thursday, down to 1.8. Great news, since the greater the bilirubin, the lower the quality of life (translation in my case: less bilirubin equals less itching!).

As I write this, nearing 6:00 am the following morning, about the only side-effect I’ve experienced are deep naps.

Cool!

Erick (San Rafael, California)

When I entered the hospital, exactly a month ago, it was my first hospitalization since I was a small child, more than fifty years ago, and I thought the doctors were just over reacting, treating a stomach flu as if it were a heart attack.

Later that day I had an ultrasound. The tech was close-mouthed, but I knew something was wrong, if for no other reason than a routine examination shouldn’t take all that long, or require that much double-checking. Sure enough, as the follow-up CT Scan and biopsy revealed, I had cancer, malignant, in multiple places, none of them good. It had started in the pancreas (explaining my diagnosis of diabetes earlier in the year), and spread so extensively to the liver that the tumors were described as ‘innumerable.’

A couple of days later I was informed that my beloved friends, Dan and Tina Iyama-Kurtycz, had booked flights from Madison, Wisconsin to Oakland, California, and that they had made arrangements for me to see a world-class specialist in pancreatic cancer at the University of California San Francisco Medical Center. Since they’re both medical doctors, with hellishly busy schedules, it was a big clue they were taking this thing seriously.

Fast forward through various meetings with Kaiser doctors (I’m covered by the Kaiser-Permanente HMO), including my primary and my new oncologist, and it was clear that the prognosis was dire. Of greatest concern is my liver, and trying to maintain its function, so ‘aggressive chemotherapy’ was recommended.

The only remaining mystery was about the exact nature of my cancer, on a cellular level. Based on the written pathology report from Kaiser, it was thought I might have a very rare form (Dan’s only seen two cases in 30 years!). Just a couple hours later, after Dan and the experts at the University Pathology Lab reviewed the slides, there was an indication that my cancer might be something even more rare and obscure. At this point, until more material is excavated from the ‘block’ (the thing that contains the raw cells from my biopsy), nobody really knows.

Whatever it is, I start chemotherapy on Monday, December 24th, at 8:30 am pst.

Wish me luck.

Erick (San Rafael, California)

For weeks I’ve been trying to figure out how to broadcast the news that I have cancer, and that I’m hoping to hear from all my beloved friends.

Naturally, my friends beat me to the punch. Not content to wait around, Kevin Siembieda and a bunch of others snagged the ‘erickwujcik’ URL and posted the big news. It was a total surprise to me.

Even more surprising, it moved me to tears. Still does.

http://www.erickwujcik.com

I am crazy rich in friends.

Now that the ball is rolling, I’ll try to keep everyone posted on this blog, letting you all know how my life, and the fight for more of my life, is progressing. I also plan to let you know about my day-to-day joys, about my insane plans for the future, about how people might be able to help some of my dreams become reality, and other stuff, good and bad.

I’m also planning on posting some bits and pieces from notes on role-playing. All part of a master plan to build a new book, On Role-Playing, which I’m hoping will make available to a wider audience many of the crazy concepts I’ve shared with friends over the years, but never published.

Thanks!

Erick (San Rafael, California)