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VW and Audi Chiptuning solutionsTake your Prized possession to the next Level with ATM Chiptuning! A Chinese translation of this page has been provided, courtesy of a team in China (contact person: Tao Yuting) - thanks! We are currently narrowing down some immunuotherapy-based apporaches that would presumably come with little or no side effects.
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! 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. I'm sorry I haven't posted much recently; there just hasn't been too much notable going on.
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! Yesterday's PET scan showed that I have very tiny (5mm or less) metastases in my lungs and some lymph nodes in my chest. 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 recovering much faster this time from the congestive heart failure (practice makes perfect, I guess). Two of my favorite people, MR Kesley and Jessica Hodgins have been visiting, which is wonderful and has buoyed my spirits!
Hyperion says they're about to have two million copies in print, but all I cared about was the first 3 copies. Thanks to my friend Jack, who pointed out recently that Chloe and Cindy Lou Hoo appear to be separated at birth! 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.
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!
Well, I'm not quite back on the bike, but I'm healthy enough to travel and move forward with 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. 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.
2) Since all my tumors are in my liver, that means certain liver-specific treatments are possible.
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. 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. 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!
Well, except for the day to go to Congress, I've now been resting at home for more than a week.
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).
I'm feeling MUCH better since the tap (they pulled out 1.4 liters of fluid from my right lung).
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. On Thursday Jai & I met with nephrologist (kidney doctor) Thomas Whelan, who is terrific.
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. My left lung also has about a quart of fluid, but we'll get that out with diuretics rather than do another needle stick. They are tweaking the high blood pressure medicines and the diuretics, in order to find a good combination. 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.
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.
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. Our counter-measure was to add the drug Avastin (making my regimen Gemcitabine+Tarceva+Avastin). My February 5 scans showed no growth (and maybe even a little shrinkage) in the preceding month. 1) my kidney function seem to be weakening; not dangerous yet, but moving in a bad direction.
March 10th and 11th, the Pancreatic Cancer Action Network will be having advocacy days in Washington, DC. 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).
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.


I am particularly proud that I negotiated to get the words "Carnegie Mellon" on the front cover! 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. 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. 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. 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. Kudos to my dive buddies, Steve, Jack, and Scott, who kept very careful watch over me in the water.
In addition to publicly thanking JJ Abrams, I just wanted to say what an incredibly egoless and cool guy he was. 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. 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.
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.
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. Alice Merit badge for Girl Scouts, made by a single troupe more as a lark than anything else. Jai is a huge Police fan, so imagine her surprise when we were whisked backstage to get to meet the band!
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. 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 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. 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. Interestingly, this marks the last thing I can do to help myself, which is a little unnerving.
I thought you might like to see some photos of the folks who are working overtime to keep me alive.
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. Of course, you can't really see his face in this picture, as he's (naturally) got his hands in the air. 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.
Yesterday's MRI confirmed that what they had seen on the CT scan (see: Dodging Bullets, below) was definitely a cyst. 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. Six days after being unhooked from the chemo, I was back on the field with my rec-league flag football team.
My long-term odds remain 45%, but I am highly optimistic that I am going to win the coin toss. Through all of this, I've tried very hard to stay positive, but it's very hard to know how one is really doing in situations like these.
Many things have helped keep me going throughout this process, mostly knowing how many people have been rooting for me.
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Chemotherapy has a cumulative effect, so it takes longer to recover the deeper one gets into this. 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. Blood pressure has now been undercontrol nicely and we figured I was strong enough to give it a try. I also have some metastases in my peritoneum and retroperitoneum cavities (basically, inside my abdomen). 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.
The bottles stand on their caps, there's a large flat surface, and they make the font as large as will fit. It wasn't serious enough to land me back in the hospital, and I'm hopeful we'll have this turned around pretty quickly. 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. They preferentially go towards tumors (counter-intuitive, but true), and both block blood flow to the tumors and irradiate them. 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.
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.
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.
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. 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. It's a pretty safe procedure, but if it can be avoided, they prefer less invasive approaches. 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 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. However, if the damage the chemo drugs did to my kidneys is permanent, that would be really, really bad. She's doing great, and has become quite the advocate, as well: check out the relay for life to see how you can help.
Nobody knows, but I'll ride it until it stops working; with luck I can buy another few months. 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). The short version is: the tumors are still to small to be felt, or to have any effect on my health. Some days I'm tired, and some days I have flu-like symptoms (chills, muscle and joint aches). 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!
My december 7th CT scan was basically a photocopy of my Nov 8th scan; the tumors have not grown at all.
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. Karlstrom Outstanding Educator Award : this was very touching because it was Andy van Dam who called to tell me. Jai thought it was hysterical that a turkey vulture followed me around for several hours during a walk.
I get chemotherapy once a week, and it has some side effects but has not been dramatically affecting my super powers. 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. 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. Shortly after my terminal diagnosis, I knew that one of my biggest priorities was to create memories for my children. 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).
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. These moments (there were two in Houston), are probably even harder than the chemo and radiation.
He sent me the following, with a note that said "Remember to CALL HEADS!" Boy, did that make my day! I had blood work done today, and my WBC (white blood cell count, which indicates ability to fight off infection), hemoglobin (basically, the blood's ability to deliver oxygen), and magnesium levels were all acceptable.
When I was first diagnosed, I was told that the overall odds for surviving for 5 years were only 3%. 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.
But by the time this is over, it'll probably be over 5,000, so don't worry too much just yet!
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.
The fluid tap, by the way, works almost identically to a beer keg, in terms of the physics!
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.
And my GI tract is still somewhat of a mess; I eat 4,000 calories a day, just to maintain weight. 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.
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. There are 18 photographs, 1 bar chart, and (for all my mathematical friends), one equation. 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. Hence the engineering question: What would make for the sharpest, most visceral memory, esp. He also responds to email, and has the wonderful property that he doesn't sugar-coat anything. 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. Fortunately, this happened at the doctor's office and they quickly ruled out serious stuff like heart problems. Although it's very strange to each like a pig all day and still barely gain weight, which is due to the fact that my body doesn't process food very efficiently right now.
They then siphoned off more than a quart of fluid, which lab tests showed was unremarkable.
The big problem was when both the heart and kidneys were getting hammered, which let to the fluid build-up.
He has performed hundreds of Whipple surgeries, and based on my experience, really knows what he's doing. His medical experience mitigating side-effects and helping provide emotional perspective on the whole experience were invaluable. 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! Near as we can tell, it was a nasty episode of heartburn; it happened again Monday night, but nothing since then. Within an hour, my breathing was feeling normal (instead of the labored, shallow breathing I'd been doing).
Just as important, he gave me his email and cellphone info, and said to call him anytime, which he's honored. I go back once a day for 4 days for them to draw blood to measure how the vaccine is being absorbed. And it would be my luck to have it happen at the doctor's, where we could quickly handle it! Barbara Biedrzycki, the researcher, is coming into work on Sunday so I don't have to stay all next week. 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.



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