Randy Pausch's Update page

Randy died this morning of complications from pancreatic cancer. The CMU news story is here

A biopsy last week revealed that the cancer has progresed further than we had thought from recent PETscans. Since last week, Randy has also taken a step down and is much sicker than he had been. He's now enrolled in hospice. He's no longer able to post here so I'm a friend posting on his behalf because we know that many folks are watching this space for updates.

I continue to slowly recover. Chemotherapy has a cumulative effect, so it takes longer to recover the deeper one gets into this.

Our current thinking is that more chemotherapy may not be wise; at this point, almost all potential chemotherapies may potentially make me so weak/sick that even if they were to slow the tumor, it would not be clear it would be the right tradeoff.

We are currently narrowing down some immunuotherapy-based apporaches that would presumably come with little or no side effects. More news as that proceeds.

Today's box score:

Creatanine (kidney function): 2.2

CA19-9 (tumor marker): 1400

Blood Pressure: 120 / 70

Weight: 142

Back in the fall when I testified before Congress, representative Roybal-Allard hosted me,and she was also kind enough to have this very flattering entry put into the congressional record...

Health-wise, I continue to regain strength in the hopes of trying another treatment once I'm strong enough.

We had a great day here at the Pausch household; the kids made matching tie-dye shirts for me and them (note! Tie-dye stays on skin quite a while!). I'll try to get a photo up shortly.

Health-wise, I'm slowly bouncing back from the last round of chemo. Last Thursday's PET scan showed that the cancer continues to grow, but is still more restrained in its rate of growth than it might be, which is good.

I recently received a letter from President Bush. Carnegie Mellon checked, and it's for real. Click on the image to see a large version of the letter.

This is something I suspect will be good for my kids to see someday.

Well, I ran 101 fever for three days, did a bunch of vomiting, and was too sick to really get out of bed for 5 or 6 days. Needless to say, that chemo isn't our winning combination. Back to the drawing board...

We tried a new regimen today: (eribitux + ironotecan). Blood pressure has now been undercontrol nicely and we figured I was strong enough to give it a try.

Everyone should have a day this perfect in their lives. Carnegie Mellon flew Jai and me up to Pittsburgh to attend graduation. I had the honor of giving the charge to the graduates at the end of the ceremony. Even the weather cooperated to make it a perfect day with the sun breaking through the rain clouds as the ceremony started. I also got to speak briefly to the SCS and ETC commencement ceremonies. It was wonderful to see all of our old friends and colleagues and I was very touched by the invitation.

My three minute address and dramatic ending ---------------->

I'm sorry I haven't posted much recently; there just hasn't been too much notable going on. Mostly, I'm resting and rebuilding strength. Today has been my best day in a while; I took at 2 hour nap in the afternoon, but other that that have been up and active all day.

Today's box score:

Creatanine (kidney function): 2.8

CA19-9 (tumor marker): 634

Blood Pressure: 135 / 85

For Mother's Day, we managed to arrange to have Jai get away for a night in a local hotel, where she was able to sleep in until 9am; a truly rare treat for a mother of three little kids!

We also took a spin in a "kit car" of a 1965 Shelby Cobra.

Yesterday's PET scan showed that I have very tiny (5mm or less) metastases in my lungs and some lymph nodes in my chest. I also have some metastases in my peritoneum and retroperitoneum cavities (basically, inside my abdomen).

This is unfortunate, but we knew it would happen sooner or later, and we've been able to stave it off much longer than anticipated, so I'm very grateful for that.

My current strategy is to continue to recover from the heart and kidney failure, and once I'm strong enough, then we'll either do the SIR-Spheres or some systemic chemo, depending on the relative growth of the liver and non-liver tumors.

I'm in the process of slowly getting my strength back. Once we have demonstarated we can keep the blood pressure down, then we can dial back on the blood pressure meds, which are causing a good part of the fatigure.

Several people have expressed concern about the tumor marker. True, it's going up. But by the time this is over, it'll probably be over 5,000, so don't worry too much just yet!

Today's box score:

Creatanine (kidney function): 3.1

CA19-9 (tumor marker): 404

Blood Pressure: 130 / 82

For those of you scoring the game at home, see today's box score.

I'm recovering much faster this time from the congestive heart failure (practice makes perfect, I guess). I'm still hideously fatigued, but today I was out of bed most of the day.

Two of my favorite people, MR Kesley and Jessica Hodgins have been visiting, which is wonderful and has buoyed my spirits!

Today's box score:

Creatanine (kidney function): 3.2

CA19-9 (tumor marker): 295

Blood Pressure: 134 / 88

Hyperion sent me a nice plaque ... apparently the book we did (for which the credit goes to Jeff Zaslow), has become a #1 best seller.

Hyperion says they're about to have two million copies in print, but all I cared about was the first 3 copies.

On the left you can see the total number of medications I'm currently taking. Keeping all this straight is a nightmare.

I'm really impressed with Target's unique design (see right). The bottles stand on their caps, there's a large flat surface, and they make the font as large as will fit. This is a wonderful example of "design making the world a better place."

Thanks to my friend Jack, who pointed out recently that Chloe and Cindy Lou Hoo appear to be separated at birth!

E ck. Yesterday's visit to the cardiologist showed that I'm technically back in heart failure. My "ejection fraction" (basically, heart output) dropped back down to 30%.

The good news is that only 24 hours later, the medications they put me on have put my blood pressure back in the normal range, and the diuretics have caused me to drop 4 pounds of water weight; both of which were doubtless contributors. It wasn't serious enough to land me back in the hospital, and I'm hopeful we'll have this turned around pretty quickly. The major bummer is that the blood pressure meds make me fatigued.

I spent all day Thursday at the Univ. of Maryland, being seen by fantastic doctors. I am now qualified for this treatment.

Jai & I now need to decide how much longer I need to regain my strength before we might pursue this.

Oh, the picture here has nothing to do with the text; I just thought it was a great photo of Chloe!

Robin Luo, a fellow cancer patient (see below; she's the one who got "the elephant in the room") was an olympic torch carrier - how cool is that!

Well, I'm not quite back on the bike, but I'm healthy enough to travel and move forward with treatment. Tomorrow I'm spending the day at the University of Maryland being evaluted to see if I am a candidate for the SIR-Spheres treatment.

Basically, it's a process where a large number of tiny (thinner than human hair) spheres are irradiated with Yittrium-90 and then squirted into the artery that feeds the liver. They preferentially go towards tumors (counter-intuitive, but true), and both block blood flow to the tumors and irradiate them.

The book went on sale today. Lots of media outlets ran stories, which is very nice of them.

Diane Sawyer is running a special tomorrow (Wednesday) night at 10pm on ABC. People who know what I'm really like will doubtless be throwing tomatoes at the screen ;-)

For those of you familiar with boxing, I would describe the weeks since my heart & kidney failure to be a "standing eight count." I got knocked down pretty good and needed time to gather myself. Now I'm back on my feet; still a little wobbly, but ready to engage in the fight again.

Yesterday's CT and MRI scans showed that I've added a new, 11th tumor (small), and that a few of my original 10 tumors have grown, but only negligibly so. My biggest tumor is about 2.5cm in diameter. Given that I've been off chemo for six weeks, this was jumping-up-and-down good news, for two reasons:

1) It means the cancer has not grown like craxy, a big fear since stopping chemo.

2) Since all my tumors are in my liver, that means certain liver-specific treatments are possible.

I'm typing this from a recovery room; I just had a biopsy taken of my tumor tissue; that will be sent to TGEN in arizona, where they will run some tests to see if they can identify which chemotherapy drugs might be most effective on my particular tumors.

My next step will probably be embolization with theraspheres; a liver specific treatment that has a very low rate of side effects, and won't make me feel crappy like systemic chemo does.

The fight is rejoined; I've got much more energy now -- I hope to be back on the bike in a week or so.

Today's news brought the sad report that Dith Pran, one of the great heros of all time, and the inspiration behind the film The Killing Fields, just died from pancreatic cancer. Details are in this story.

Pol Pot's Khmer Rouge regime failed to kill Mr. Pran.

It took pancreatic cancer only three months from diagnosis.

I'm definitely having more energy; spending less time in bed each day, and feeling more "human" overall. My doctor says I'm strong enough for us to start moving on tests and my next steps in treatment, probably in the next 2 weeks. Good thing, too: my CA19-9 blood marker, which in my case is strongly correlated with tumor activity, has been slowly rising:

recent CA19-9 numbers:
2/29: 94
3/14: 103
3/21: 170
3/27: 216

If my tumors were a stock, they'd have a "buy" rating ;-)

The last few weeks have been tough; I've been in bed most of each day, having to ration my energy, which is very unnatural for me. Total exhaustion is very frustrating. However, I am starting to, very slowly, gain more energy each day.

Tuesday's trip to the cardiologist yielded great news: my echocardiogram showed that my heart function is definitely returning: my "ejection fraction" (measure of blood ejection by the heart) was at its low point 25%; it's now up to at least 45%, and "normal" is 55 to 70 percent. Also, my cardiologist says a lot of the fatigue may be caused by one of my blood pressure medications (coreg), and next week they will probably swap that out for another drug, now that I'm doing better.

On the kidney front, my nephrologist is extermely encouraged - for those of you scoring the game at home, my creatanine level (peaked at 3.9) is now down to 3.1, and he says that's a very stong indicator my kidney function is going to return.

The only bad news is that the tumors have apparently decided they've been chivalrous enough; my CA19-9 went up from 103 to 170; while not definitive, it's a strong indicator that they are on the move. So I need to hurry up and get healthy enough for our next round of treatment.

People who know me know that the talk that I'm actually most proud of is the talk I've given over the years on "Time Management."

With great thanks to Gabe Robins, I'm thrilled to report that if you type "time management" into Google, the video of that talk is now the 6th result! (By the way, I've made that video available under a creative commons license, so anybody can show it for free, so long as they give attribution).

Well, except for the day to go to Congress, I've now been resting at home for more than a week. Spending almost all day in bed is hardly my normal state, but the exhaustion is very real.

I've learned a lot about diuretics: drugs that force water out of the body. Part of why my organs (heart/kidney) failed is that fluid built up in my body. With aggressive diuretics, we've forced 20 pounds out of my body in the last 12 days. Wow. I feel like a crushed grape!

The doctors are very optimistic my heart will return to something like 80-90% of its original capacity (which is fine; I went into this with great heart function). The biggest question is whether my kidneys will recover and start working on their own. We just stopped the diuretics, to see if my kidneys will "kick in" on their own. It will take probably 2 weeks to know for sure. For those of you scoring the game at home, my creatanine level peaked at 3.9, but is down to 3.4 - my nephrologist (who is awesome), says that is a very encouraging sign.

So I rest, and I rest, and I rest. The really good news is that - at least based on blood markers - the tumors are being very chivalrous and not taking advantage of this opportunity to run wild, before I'm strong enough to fight back. My CA19-9 was 103 last Friday, which is only up a tiny bit from my last round of chemo.

I was discharged from the hospital on Monday afternoon. Great thanks to my personal angel, MR Kelsey, who came down from Pittsburgh to be with me. MR, you are awesome.

I'm feeling MUCH better since the tap (they pulled out 1.4 liters of fluid from my right lung). There's a similar amount of fluid in my left lung, but we'll try to suck that out with diuretics, rather than do another tap, which has small, but real, risks.

After consulting with my doctors, I got permission to travel today to Washington, DC, to testify before congress about the need for more funding for pancreatic cancer research. I think it went pretty well; the staffers tell me that when the congresspeople put down their blackberries and listen, it's a very good sign, and that certainly happened.

Oh, and in the "never a dull moment" category, we had a pretty serious car accident on the drive up, but everybody was okay. How ironic it would have been to go that way!

Great thanks to Julie Fleshman and everybody else at PanCAN (www.pancan.org) who did all the work to make my testimony possible. Great thanks also to Jack Sheriff, my long-term best friend, who was able to come and provide support; I'm still a little wobbly from the heart/kidney issues, but with everybody's help, I got through it, and I'm hoping to continue to heal up over the next few weeks.

On Thursday Jai & I met with nephrologist (kidney doctor) Thomas Whelan, who is terrific. Based on lab work and my symptoms, he recommended that we use a combination of diuretics and a "tap" to get rid of the fluid around my lugs. Both for reasons of speed and safety, he recommended I get admitted to the hospital and do this in-patient, so I went into the hospital Thursday night.

Although we're still sleuthing down exactly what caused it, we believe that the chemo drugs ended up putting a huge strain on both my heart and kidneys. That led to the buildup of fluid around my lungs. Friday morning they did the "tap": - inserting a needle in my back, between my ribs, and piercing the outer lung sac, but not the lung itself. They then siphoned off more than a quart of fluid, which lab tests showed was unremarkable. Within an hour, my breathing was feeling normal (instead of the labored, shallow breathing I'd been doing). Most importantly, I could lay flat and really sleep for the first time in 2 weeks. It felt incredibly good.

My left lung also has about a quart of fluid, but we'll get that out with diuretics rather than do another needle stick. It's a pretty safe procedure, but if it can be avoided, they prefer less invasive approaches.

They are tweaking the high blood pressure medicines and the diuretics, in order to find a good combination. The doctors are fairly confident there isn't any long-term damage to my heart. That's less clear with my kidneys, but I can live okay with them in their current state. The big problem was when both the heart and kidneys were getting hammered, which let to the fluid build-up.

I'll probably leave the hospital tomorrow (Sunday), or Monday. It will take about a week to get me really robust again, but I already feel SO much better now that they've tapped the fluid. The fluid tap, by the way, works almost identically to a beer keg, in terms of the physics!

The short term crisis is under control. The longer term strategy of how to continue treatment of the cancer, given my new constraints, is something I'll have to figure out this week.

The good news is that the tumors appear to still be basically held in check.

The bad news is that the side effects of the chemo drugs have become too toxic.  My kidneys are now performing at well under 50% efficiency (Creatanine is 3.4, and BUN is 54, for those of you scoring the game at home). My blood pressure has soared up to 200 over 100. . I may technically have "high output congestive heart failure," but that's not nearly as bad as it sounds.

The painful part is that we think my abdominal cavity has started to fill with fluid, a side effect of the kidney inefficiency and high blood pressure. .  That particularly stinks because the fluid pushes on lungs and heart.   I can't sleep (or breathe clearly) while lying down; I have to sit up and try to sleep that way. And I get totally out of breath after a flight of stairs.

So we're doing a bunch of things to address these issues:
- we're stopping all chemo
- I'm now on high blood pressure medication
- I'm taking a diuretic that is supposed to get my body to empty itself of fluids, so that my body (in theory) starts to absorb back the fluid in my cavity and start to urinate it out over time.
- I'm seeing a nephrologist (kidney specialist) tomorrow.
- Yesterday I got a blood transfusion, which greatly helped my low red blood cell count and is giving me more energy.

This is a setback, but hopefully a small one. However, if the damage the chemo drugs did to my kidneys is permanent, that would be really, really bad.

More news as it develops. 

Stephen Jay Gould wrote a brilliant essay I think most cancer patients would benefit from. It's only a few pages, and it's here.

Today is a pretty important day. It was August 15th, 2007, when I was told I likely had "three to six months of good health left."

Today is six months from that day. Just to prove I'm still alive, here I am, holding today's New York Times!

I rode my bike today; the cumulative effects of the chemotherapy are hurting my stamina some, but I bet I can still run a quarter mile faster than most Americans.

The doctors weren't wrong; they always said that if the palliative chemo worked, I'd buy more time, but that it was a long shot. And the doctors have done a brilliant job of tweaking my regimen to help my odds. How much longer this will work is hard to know, but I'm going to keep having fun every day I have left, no matter how many or how few of them I get.

At "The Last Lecture," I brought out a bunch of stuffed animals and said anyone in the audience who wanted one should grab one after the talk.

I don't know where the others ended up, but a very brave Carnegie Mellon senior named Robin Luo grabbed the stuffed elephant; she sent me this photo recently.

Robin has been battling cancer herself; and during my tough times in Houston, we exchanged frequent emails. She's doing great, and has become quite the advocate, as well: check out the relay for life to see how you can help.

It is somehow quite fitting that a compatriot with cancer got "the elephant in the room."

My CT scan in the first week of January showed the beginning of "creeping growth" of the tumors in my liver. This indicated that my palliative chemo had begun to fail. A huge bummer.

Our counter-measure was to add the drug Avastin (making my regimen Gemcitabine+Tarceva+Avastin). this was a long shot, but since Avastin doesn't have bad side effects, we figured we'd try that first.

And it worked!

My February 5 scans showed no growth (and maybe even a little shrinkage) in the preceding month. I and my docs were all giddy that the long shot worked.

The obvious question: how long will it work? Nobody knows, but I'll ride it until it stops working; with luck I can buy another few months. Meanwhile, I've identified the "next steps" I'll take after that, all of which are more toxic in terms of side effects. So I'm ready and loaded for bear when the time comes.

The only downsides are

1) my kidney function seem to be weakening; not dangerous yet, but moving in a bad direction. It's possible the Avastin is the culprit, but it may be a combination of Avastin, gemcitabine, and the IV contrast in all the monthly CT scans (most people are only scanned every two months). So we'll be watching my kidneys carefully.

2) My last chemo produced a 3 day fever, spiking at 103, plus some nausea.

These are small prices to pay ... any day you have tumors in your liver and they don't get bigger is a good day!

March 10th and 11th, the Pancreatic Cancer Action Network will be having advocacy days in Washington, DC.

I plan to be there. Perhaps I can lead a cheer or two at the rally.... how about:

two...four...six...eight .... with pancreatic cancer you emaciate!

This is the question I'm most commonly asked.. The short version is: the tumors are still to small to be felt, or to have any effect on my health.

So what I'm feeling is due to the chemotherapy. Some days I'm tired, and some days I have flu-like symptoms (chills, muscle and joint aches). And my GI tract is still somewhat of a mess; I eat 4,000 calories a day, just to maintain weight. I occasionally have mild nausea, but it's rare and really mild.

In the last month, the new side effect is neuropathy: numbness in the fingers and toes. It's been getting worse; I can still touch-type, but I make tons more mistakes. And it's getting hard to find things in my pockets, since I'm losing the sense of touch; I can mostly just feel pressure.

All in all, a small price to pay for walking around!

Jai & I just took a long weekend in Orlando with Dylan and Logan (Chloe's really too young, so she stayed here with Jai's relatives).

Highlights of the trip:

- Logan asking to see "Shampoo, the Killer Whale"

- Logan jumping a barricade and sprinting into a parade, and being "taken down" by two security guards while Jai madly gave chase.

- Meeting Mickey.

- Winning stuffed animals. I bagged a snake, and Dylan and Logan won their first "all by myself" animals! (Turns out they're naturals at the squirt guns).

- Riding in the nose cone of the monorail; the driver even gave Dylan and Logan co-pilot's licenses!

The Pancreatic Cancer Action Network launched a major initiative called Raise the Cure, attempting to get Congress to allocate more research funding for pancreatic cancer.

I spent the day on the hill, meeting with senators and members of the house ("Hi, I'm Randy, and I'll be your 'Michael J. Fox' for the day...")

Here we are with Steny H. Hoyer , the House majority leader. Next to me is PanCAN’s Megan Gordon Don, director of government affairs, and farthest from me is Julie Fleshman, PanCAN's president and CEO.

Kudos to Jeff Zaslow, the world's fastest writer. I am proud to say that the book "The Last Lecture" is now done!

I'm even prouder to say that we accomplished this with the major constraint that it take little or no time away from family (see "How to Write a Book on an Bike," below).

Jeff and I are very proud of how it has turned out. It's 61 chapters in 206 pages. There are 18 photographs, 1 bar chart, and (for all my mathematical friends), one equation.

I am particularly proud that I negotiated to get the words "Carnegie Mellon" on the front cover! (click on image to see it larger).

Hyperion is publishing the book in early April; details at www.TheLastLecture.com

fromchinatorandy

Kau-Fu Lee sent me the following; if you download and run this .exe, it's a sweet animation from a bunch of chinese students thanking me for the lecture.

It's a small world, after all.

Several people were kind enough to point me to this very inspirational piece by Jim Valvano, who - like me - did it knowing he was a terminal cancer patient. I personally love the moment where they try to tell him he only has 30 seconds left! Click here to view the video.

For most people, Dec 31 is New Year's Eve. In our family, it's Dylan's birthday. Today was a great one; Dylan spent the morning at the aquarium seeing all sorts of animals, then spent the afternoon with Daddy and his cousin Hannah, watching a movie. Then, we all got together at Red Robin for dinner, including balloons.

Dylan & I went to one of those photobooths where they take your picture and then process it to look like a human did it in pastels. The best part is there's a video where they make it look like a human is really drawing it - every so often, he says "oops!" and erases a part and redoes it - Dylan thought that was hysterical! Here's the final product

Christmas is a wonderful holiday. It's even more wonderful when you weren't sure you would be around for it.

A natural question is "how long will the palliative chemo (gemcitabine+tarceva) continue to work, holding my tumors basically stable in size?" There is some data on the roughly 10-15% of metastatic pancreatic cancer patients where gemcitabine works for them.

I talked with my oncologists, and read some journal articles. There's no single answer (it's obviously a bell shaped curve), but the best guess, based on available data, is that my tumors will "hold" for another 2-4 months from today.

That's really cool. Jai and I call this "bonus time."

In terms of medical treatment, the general consensus seems to be "keep doing what's working." Once it stops working, there are a number of things to try, but they're all even longer shots than the thing we tried first, which only works for 10-15% of patients.

Jai wanted me to write a book, but that begged the question of how to do that without taking time from being with the family. The solution? Jeff Zaslow is actually doing the heavy lifting of creating the prose (and dang, is he a good writer), but the deal is that he and I talk one hour each day, while I'm exercising on my bike.

That way, I can get all my stories and anecdotes to a real writer (I stink at writing, anyway), without taking any time from family.

The palliative chemotherapy (gemcitabine + tarceva) is still working. My december 7th CT scan was basically a photocopy of my Nov 8th scan; the tumors have not grown at all. My CA19-9 (for those of you "scoring the game at home" dropped from 208 on Aug 14th to 59 on Nov 2, and then 64 on Nov 26th. This is all really good news.

My local oncologist, Dr. Michael Lee (who is spectacular, and is himself a cancer survivor), tells me that my response, on a scale of 1-to-10, is a 10.

I need to be clear: this is not a cure, and it won't work for long. "Winning" right now means buys extra months, not years. But I'm thrilled to have this "bonus time"!!! And I will be in good health for Christmas.

I will probably be adding Avastin to my cocktail soon.. It's been a wonder drug for lots of metastatic cancers, but the large trials don't really indicate it makes much of a difference for pancreatic. However, several doctors have anecdotal stories of a single "fluke" patient who lives 12 or 18 months on it, so I'm inclined to try to be that fluke patient.

I suffer small side effects from the chemo: I have 1-2 days/week (surprisingly, it starts about 48 hours after the IV) where I feel mild nausea and some substantial fatigue. We switched my "chemo day" from Fridays to Mondays so that my weakest day occurs during the week, when we have Rachael to help Jai out with the kids. Sometimes, I can't feel my fingers or toes, and I've had some infrequent, but very painful intestinal cramping, but all-in-all, "a very small price to pay for walkin' around," as we in the cancer business say. My red blood cell counts are a little down, but I can ride a bike an hour each day, and I can fully play with the kids and enjoy my life.

Meanwhile, I'm frantically examining "plan B" treatments when the gemcitabine+tarceva stops working. Frankly, there aren't any silver bullets out there, but I'll give it my best shot. Leading candidates are some vaccine trials about to open up at Johns Hopkins, and TGEN (www.tgen.org), which does some customized therapies. I have about 30 other things I'm investigating, but those are the current leaders.

I'm definitely in the running for "healthiest dying man in America." This photo was taken at 105 feet off the Cayman islands on Dec 1st.

When I asked my oncologist if I could go scuba diving, he thought for a while and said, "Medically, I can't think of any reason you can't .... but I have to admit, it's not a question that comes up very often for metastatic pancreatic cancer patients!"

Kudos to my dive buddies, Steve, Jack, and Scott, who kept very careful watch over me in the water.

This is, by far, the coolest thing (okay, #2 behind the palliative chemo working). JJ Abrams (Hollywood producer/director who did the TV series "Lost," the movie "Mission Impossible III" and a bunch of other stuff) emailed me, out of the blue:

JJ Abrams wrote:
> Dear Randy --
>
> Hi there -- I'm JJ Abrams, director of the new Star Trek movie.
>
> I read about you and your condition, and ALSO your affinity for things
> Trek.
>
> So, I just wanted to put the invitation out there -- that if you had
> any desire to be in the film (can't promise you role as CAPTAIN,
> but... we could do SOMETHING!), it would be my honor and pleasure.
>
> The last thing I want to do is intrude, so feel free not to reply --
> but I wanted to make sure you knew that, if you are willing and able,
> the door is wide open.
>
> I hope that your treatments are going well and that we get to meet one
> day.
>
> Best,
>
> JJ

Naturally, I presumed this was one of my friends, playing a prank. But after a little sleuthing, it was clear it was for real. Jai & I hopped a plane to LA, where I got a custom-made Star Trek uniform and my own station on the bridge, where I had lots of buttons and controls. I even got a LINE!!!!

In addition to publicly thanking JJ Abrams, I just wanted to say what an incredibly egoless and cool guy he was. We chatted a little bit between takes, and he is so tech-savvy (and I'm not saying that *just* because he knew all about Alice!). Anyway, it was a truly magical experience. Speaking of Magic, I got to fulfill a long-standing wish of taking Jai to the Magic Castle on that trip, courtesy of Peter Farquar. MK Haley, who is herself quite magical, joined Peter and his wife and Jai & me for an incredible evening.

the "Star Trek" movie will be in theaters December 2008. Don't blink or you'll miss me, but at some point a guy walked across the bridge and says "Captain, we have visual!"

I'd *love* to show you my costume (which they let me keep), but I promised JJ Abrams "no photos". They're trying to keep things a secret; in fact, even on the Paramount lot, you have to walk around in a trenchcoat if you're in a Star Trek costume. It's kind of like being at a flasher's convention!

Oh, and if you think I'm making this up, here's a copy of my check from Paramount (they had to pay me due to some union rules or some such... I'll obviously be donating this to charity).

As you all know, we moved to Virginia immediately upon my terminal diagnosis; the goal being to have our family settled as soon as possible. That strategy has been really validated. Life here is logistically much easier (warmer weather, living on a a cul-de-sac in suburbia). We miss everyone back in Pittsburgh, but our new neighbors have welcomed us warmly and the kids are thriving, which was always our main concern. Being so close to Jai's family is the huge win we knew it would be.

Dylan is loving kindergarten and taking Karate classes. Logan is potty trained (the pure pride when he says "I used the Potty all by myself!" is pure Norman Rockwell). Chloe says about 100 words, most of which melt my heart. Unfortunately, she recently learned "no no no no no," which she treats as one word. Jai is redecorating (i.e. "nesting") in our new home. We have a wonderful nanny Rachel, and Laura from Pittsburgh comes down to help out, which has made it possible for us to travel occasionally.

We are starting to look into our options regarding Hospice care when the time comes, but Jai & I are very pleased with having gotten the kids into their new routine and so settled in advance of the coming storm.

Jai & I have been trying to see how we can use my D-list celebrity (apologies to Kathy Griffin) for good. I'm working with both the Pancreatic Cancer Action Network (PanCAN) and the Lustgarten Foundation, doing things like videotaping public service announcements and meeting with lawmakers up in Washington, DC. One reason pancreatic cancer is such an "orphan" disease is that we don't have many long-term survivors to lead marches on Washington. So I'm trying to sort of become the "Michael J. Fox of pancreatic cancer."

The lecture I thought I would be famous for at the end of my career was the talk I give occasionally on "Time Management." I was able to travel to the University of Virginia and give it today. Great thanks to Gabe Robins for his herculean efforts.

I spoke in Old Cabell Hall, which is an amazing theater; 180 degree spread and very vertical; it seats 850 and you feel like you can touch any of them at arm's length. It was important for me to give this lecture and have it properly videotaped: now that we've seen how effective Google Video is at allowing a talk to be widely viewed, I'd like for the information in this talk to be freely available for anyone who might benefit. Plus, it was great to see my old colleagues, and my family was able to converge and we all got together, so it was just a great day.

The talk is available here.

When Jeff Zaslow's column appeared in the Wall Street Journal (WSJ), about a dozen publishers emailed me, asked if I would be willing to write a book based on it. (I found this laughable, since at the time the palliative chemo was not yet working, and I thought I was down to about 6 weeks of good health). When the palliative chemo started working and we had some breathing room, I mentioned this to Jai, and she told me she wanted to do it. She was, in fact, quite emphatic. We had always talked about my "writing the manual" for her and the kids in my remaining time, and Jai felt that if it were a "real" project, I might take it much more seriously.

Jeff Zaslow from the WSJ, who is a terrific writer, was willing to be my partner and do the heavy lifting, so the deal we struck is that we would do the book together as partners, but he would write it (my colleagues from the Alice team are smiling, as they're familiar with this model of my "authoring" a book). The wonderful part is that this takes almost no time from the family: each day, I ride my bike for an hour and talk with Jeff on the cellphone. The process has already been wonderful; he's great at dragging stuff out of me I would never have dredged by myself.

I've grown a little disappointed with the news media: there were early reports that Jeff was somehow "cashing in" on my story, which is simply not true. Neither he nor I were "cashing in," for that matter (the book getting a large advance-on-royalties took us both by surprise) - but I thought it was particularly unfair that some early stories made it look like he was somehow doing this by himself.

I am thrilled that Hyperion, the publishing arm of Disney, will be publishing the book. Somehow that just feel right, and they've been great to work with, in terms of being very respectful of my circumstances. Here's the press release about the book.

In the last month, I've received a number of professional awards. I would be disingenuous if I didn't admit that I don't feel these are really deserved; after all, there's the "give the dying guy an award" factor. However, they all reflect favorably on Carnegie Mellon and I accept them all gratefully. As they say, "Dying is a good career move." :-)

Specifically,

ACM SIGCSE Outstanding Educator Award: this is wonderful because it comes with a keynote address where I can talk about Alice at the annual conference. It's March 12. Through the wonders of videotape, I'll give that talk "Dead or Alive" ;-)

ACM Karl V. Karlstrom Outstanding Educator Award : this was very touching because it was Andy van Dam who called to tell me.

ACM Fellow: I'm not sure I deserved this, but I'm very honored by it.

CHI Academy. Like the ACM Fellow, playing a little over my head, but I'm very honored.

Alice Merit badge for Girl Scouts, made by a single troupe more as a lark than anything else. But dang, this really made my day!

November 19th was declared "Randy Pausch Day" by the city of Pittsburgh. Randy Bryant was kind enough to accept the award in person, and they phoned me and said nice things about how I had shown the world how great Carnegie Mellon and Pittsburgh are.

On the way to the Police concert, we stopped in Williamsburg. Jai thought it was hysterical that a turkey vulture followed me around for several hours during a walk.

He's in the tree in the lower picture.

Jai &I took our first kidless vacation in a long time.

We went on a three day, three night adventure to Williamsburg and Charlottesville. At UVa, we saw "The Police" perform. The concert is truly terrific.

Jai is a huge Police fan, so imagine her surprise when we were whisked backstage to get to meet the band! Great thanks to Gabe Robins and others at UVa who made this possible.

What an "Incredible" family we are!!

Medical update: Things are going well. I get chemotherapy once a week, and it has some side effects but has not been dramatically affecting my super powers.

On Oct 1st, I had a CT-scan, and a follow-up PET-CT scan on Oct 13th. Both confirmed that we are willing: The tumors in my spleen are now gone, and the dozen or so tumors in my liver are all either stable or slightly smaller.

This happens in something like 15% of the cases of people who get gemcitabine+tarceva. It's a lottery, and I'm a winner. Statistically, this means I probably just bought an extra 2-4 months of good health. Said another way, I may have just doubled my life expectancy - you try to do that!

Most importantly, that buys me time to pursue "plan B" - the gemcitabine+tarceva will not last forever, and we want to have the next thing cued up and ready to go.

I am currently looking into other chemotherapies, some vaccination approaches (including a custom vaccine that would be made from my own cancer cells), and some super-secret stuff I'm not at liberty to talk about. But it is safe to say that I am thrilled with the quality of medical care I'm receiving and that I feel like I'm getting the cutting edge stuff that my species can provide for me.

Having said that, "winning" means buying time; I will always hold out hope that a miracle cure is developed that would give me a normal life span, but right now we're fighting to stay alive a few more months at a time.,

My quality of life is very good: I ride my bike an hour a day, play as much as I want with my kids, and enjoy being married to the most wonderful woman in the world. I have intermittent gut pain, some fatigue, and some mild "flu like symptoms" each week, approximately 24-72 hours after the chemo, but it's manageable. Small price to pay for walking around.

I'm sorry it took me so long to post this: I've obviously been a little busy. Shortly after my terminal diagnosis, I knew that one of my biggest priorities was to create memories for my children.

Chloe and Logan are both so young that it's likely they'll have no direct memories of me. Dylan is the oldest, and at 5 (turns 6 in December), his memories are likely to be fuzzy. Hence the engineering question: What would make for the sharpest, most visceral memory, esp. for a kid who loves animals? Answer: go for a Dolphin Swim!'

Dylan and I spent a glorious 4 day, 3 night "Daddy and Dylan" vacation in Orlando, where we visited the Magic Kingdom and swam with Dolphins at Discovery Cove (both places were absolutely incredible to us, providing admission, special opportunities, and most importantly, photographers to help provide images that will reinforce the memories. I have an incredible number of photos, but here are a few that I hope Dylan will cherish after I'm gone....

Yesterday I got my first round of Gemcitabine. We'll add Tarceva next week. In the first 36 hours, I've experienced zero side effects (yeah!). And tomorrow Dylan & I are taking a 3 day "Dylan and Daddy trip" to Florida to do a dolphin swim and see Mickey Mouse!

The best of times, in that about three weeks ago, my health really, really came back.  I've been lifting weights 3 times a week, and I ride my bicycle an hour each morning, at about the same pace I did before the cancer struck.  I once again bounce while walking down the hallway, and as you can see, I can lift and play with all three kids with vigor. (these pictures taken yesterday).

It is also the worst of times; a recent CT scan showed that there are 10 tumors in my liver, and my spleen is also peppered with small tumors.  The doctors say that it is one of the most aggressive recurrences they have ever seen.  The doctors are quick to point out they're very bad at predicting "how much time," but the consensus seems to be that I have 3-6 months of relatively good health.  After that, it's hard to say how rapid a decline, and it's not a particularly pretty way to go.  As we have known from the beginning, there is no effective treatment at this point; I'll go on palliative chemo to try to buy time; that works for 15%-20% of the cases, but only buys another few months.  We have confirmed the CT scan diagnosis via blood markers and a needle biopsy; the diagnosis is undeniable.

My wife, Jai, and I have had a long time to consider this possibility, and we believe it will be best for my wife and our children to be near family in Virginia, just south of Norfolk.  Our plan is to head down over Labor Day weekend, so Dylan can start Kindergarten there Sept 4th.  We can't close on a house that fast, but we will rent a beach house nearby as interim housing.

This is obviously not how I wanted things to turn out, but my wife and I have no regrets; we did everything I could to maximize my odds.  And we want to thank everyone who has so graciously helped us. 

The really weird part of all this is that I'm not depressed.  I'm not in denial (I assure you, I am fully aware of what is going to happen), nor am I whistling in the dark, but after having felt crappy and sick for 11 months, to finally be fully healthy again is so exhilarating that it's a wonderful emotional buoy.  So I am going to enjoy each day very fully, and play hard with my kids until I can't. 

I apologize to those of you I wasn't able to share this news with in person.  Since many people have asked me the same questions, I have taken the liberty of answering them straightforwardly here:

What will happen to the Entertainment Technology Center (etc.cmu.edu)?

I actually stepped down from the ETC in January of 2006, and Don Marinelli has been solely in charge since then, so there's absolutely no impact there.

What will happen to the Alice project (www.alice.org)?

I have been the public face of the project for a long time, but the truth is that it had already grown to be a collaboration between several universities, with four or five main PIs.  The Alice team is fully committed to the project, and to releasing Alice v3.0 (including teaching with Java and using the Sims characters) in 2008. I have met with Peter Lee, Dan Siewiorek, Randy Bryant, and Jared Cohon, all of whom have expressed how committed Carnegie Mellon is to ensuring the Alice project continues smoothly. 

Are you leaving Pittsburgh and Carnegie Mellon for good?

Absolutely not.  We are relocating the family quickly so we can start Dylan on the first day of Kindergarten, but I will be making trips back to Carnegie Mellon, and I am on email and reachable by phone.  In fact, I'm scheduled to give a talk at Carnegie Mellon on Sept 18th.

What should we not do?

The experts have counseled us that we should not yet tell our children, so please keep that in mind if you see us in person, leave messages on our answering machine, etc.

I want to close by once again thanking everyone at Carnegie Mellon, our church, and our friends and family, who have been so wonderful to us.  We are very grateful, and we are sorry this story doesn't have a happier ending.

On Monday, I got the last dose of the vaccine at Johns Hopkins. Just like the previous two inoculations, I got six injections (two per thigh and two on my left arm), and they have swelled up like massive bee stings (8 inch wide welts). But no real pain; just a little itching. I'll go back in every six months for a booster shot, but that's a long ways off.

Interestingly, this marks the last thing I can do to help myself, which is a little unnerving. I'm channeling that anxiety into starting to hit the gym with real vigor - building my body up in case there are more surgeries or chemo down the road....

I thought you might like to see some photos of the folks who are working overtime to keep me alive. Here is my surgeon, Dr. Herb Zeh. He has performed hundreds of Whipple surgeries, and based on my experience, really knows what he's doing. Just as important, he gave me his email and cellphone info, and said to call him anytime, which he's honored.

In addition to surgery, he conducts research on vaccine-based approaches, which could really make a difference: to support that research, please contact Kambra McConnel in the Development Department for the University of Pittsburgh Cancer Institute at (412) 623-4700 or email her at [email protected] . Donations also may be made payable to “UPCI/Pancreatic Cancer Research/Liver Pancreas Institute” (in the “memo” section of the check, if applicable, please note that your gift is given in my honor and for support of Dr. Zeh’s research) and mailed to: Development Dept., UPMC Cancer Pavilion, Suite 1B, 5150 Centre Avenue, Pittsburgh PA 15232 .

This is Dr. Robert Wolff, my primary oncologist and the person I met with regularly at MD Anderson. He also responds to email, and has the wonderful property that he doesn't sugar-coat anything. His medical experience mitigating side-effects and helping provide emotional perspective on the whole experience were invaluable.

(My five year old was very curious "Why Dr. Wolff wasn't an animal doctor. :-)

Yesterday I received the second round of the Johns Hopkins vaccine. No drama, no pain; just six needle sticks that are slowly growing into 8-inch across painless welts on my arms and legs - kinda cool, actually. Doesn't hurt a bit.

After all the recent emotional roller coaster rides, we decided it was time for some real ones, so off we went to Kennywood, Pittsburgh's classic roller coaster park. Today was special because it was the first roller coaster ride for our middle child, Logan (2 1/2 years old).

Of course, you can't really see his face in this picture, as he's (naturally) got his hands in the air.

A more complete set of photos of our day is here.

One of my quirkier hobbies is winning stuffed animals at amusement parks, and it was comforting to see the cancer hasn't diminished my skills too much.

In answer to your next two questions:

1) By tossing a softball into a milk can

2) It took four tries, at $2 a try.

Yesterday I went to qualify for the Johns Hopkins Vaccine. I knew this involved another CT scan, which is always a chance to get bad news. Only this time I actually got bad news. For details, click here. (it's a good story).

Fortunately, this ended up being yet another false positive. These moments (there were two in Houston), are probably even harder than the chemo and radiation. As I said to my wife, Jai, I don't know how many more bullets I can dodge...

This delays my starting on the vaccine by a few days, but it also reminds me how much I value every day with my family.

My lovely wife Jai and I just spent 48 hours, sans kids, celebrating our 7th wedding anniversary at Nemacolin, where they have a zip line.

I sent a copy of this photo to my surgeon, with the tagline "I guess the stiches are holding up okay"...

When this all began, I was 182 pounds. At my low point, I was down to 139, a 43-pound loss. One of the most depressing things about this was that I had to stop wearing my wedding ring, as it kept falling off and I was afraid I'd lose it. I'm now back up to 168 (and I really only want to get back to 175, not 182), and my wedding ring stays on again - yeah!

Six days after being unhooked from the chemo, I was back on the field with my rec-league flag football team. First play of the game, I caught a 25-year pass over the middle.

Granted, I was sucking wind the whole game, but damn it's good to be back on the field.

On Monday, I completed my chemotherapy! They removed my PICC line, and it feels so good to have it gone! My family had a great celebration for me: here are the boys with the balloons. Chloe celebrated by taking some of her first steps! I have started exercising again, starting with bike riding. I have no stamina, but that will come back with time. My last CT scan was clear, and my CA19-9 is 19, well within the normal range. Meaning that - for now - there's no detectable sign of cancer in my body. I am still a looooong way from winning the battle, but every day I don't lose is a day closer to achieving long-term victory.

I'm still somewhat weakened by the six months of chemo, but by June 1, I should be back to full health.  I have already regained 18 of the 43 pounds I had lost.

My long-term odds remain 45%, but I am highly optimistic that I am going to win the coin toss.

When I had to pick a course of treatment after my surgery, the "standard of care" chemotherapy had a 15% 5-year survival rate (or an 85% death rate, if you prefer...).

I gambled on the highly toxic "Virginia Mason protocol," which was getting about 45% of people to live to 5 years... but those results were based on only 100 people, all at the Virginia Mason Hospital. As a scientist, we don't like climbing out on those kinds of limbs. But in this case, as Janis Joplin sang, "Freedom's just another word for nothing left to lose."

So imagine how thrilled I was when I discovered that Washington University in St. Louis had replicated these results! It's a great comfort to know that I bet on the right horse... as toxic as this treatment has been, it would have really been awful if I were to find out that it wasn't really a better approach. Now, it appears clear that it is.