“We cannot change the cards we are dealt, just how we play the hand.” --Randy Pausch

Randy Pausch was a computer science professor at Carnegie Mellon University when he was diagnosed with pancreatic cancer in 2006. In August of 2007 a scan showed 10 tumors in his liver and spleen and the diagnosis was 3-6 months of healthy life left.

In September of 2007 he gave a lecture at CMU: "The Last Lecture - Really Achieving Your Childhood Dreams"
He also just published a book; a quick read but very uplifting and inspirational. You can read more from him on his Update Page.

Happy Passover from Bloomington

We all gathered in Bloomington this weekend for Passover - my sister and her family came from Pennsylvania, my parents from West Virginia. We all attended the Hillel seder last night where my 9 year old nephew Henry did an absolutely stellar job at chanting the four questions. He got a rousing round of applause from the room. Best part of the seder (aside from Henry's four questions) was that I did NO cooking and NO cleaning...

Here's a photo of Henry and his 6 year old brother Sam - plus Shawn, Arie, Andrew, and Zak, who joined us this morning for brunch. More photos from the weekend are here, although you'll notice Shawn managed to be somewhere else when I had my camera most of the weekend.

A heartfelt thanks to all of you

It's hard for me to put into words what life is like right now. I feel like I'm living in some upside down universe where "normal" is this state of unknown and uncertainty and worry and fear; I don't remember the last time I felt otherwise.

I've had many people tell me I'm "brave" and "strong." I feel neither. I think I can speak for all of us when I say we have no choice. All we can do is put one foot in front of the other and move forward; not because we're brave or strong but because we are. Trust me, there have been many occasions were we think "we just can't do this anymore." But then the next minute comes along and here we are. And really what choice is there?

I know I can speak for us all when I say one of the ways we move forward is because of the tremendous support we've felt from all of you. The messages here on the guest book; the emails you've sent to me or Shawn or Dave; the phone calls; the meals you've brought us; the kind words and thoughts; the prayers said in synagogues and churches all around the country... when we reach the very bottom this is what picks us up; this is what keeps us going.

Even as I write this, I can feel you reading it, all of you. Those of you we've know forever and those who we've never even met, who are reading this because someone you know has told you about Shawn. In looking at the stats for this blog, I see that you come from Illinois, West Virginia, Virginia, Indiana, Californa, New York, New Jersey, North Carolina, New Mexico, Pennsylvania, Canada, the United Kingdom, and France. There's a real sense of power in knowing that you are all out there.

And I don't really know what I can say other than I am SO grateful for your support and concern. You may think it's not much but really it is everything. And I just want to say thank you.

Sometimes Inconclusive is just exactly that...

Turns out in this case, there was no assessment of normal vs. abnormal cells, just too sparse of a sample to see anything. We knew going in that a biopsy of this area was going to be tricky and it was.

SO what's next? For the rest of this month, we'll be changing around the medication that Shawn's taking; first increasing the dosage of cyproheptadine (the seretonin inhibiter) and then switching the blood pressure medication. This has to be done gradually but so far the increase seems to working.

Once school is over, the plan is to stop the seretonin inhibiter altogether for two weeks, back on the special diet and then repeat the blood/urine study. I don't anticipate these being very fun weeks as he will most likely start feeling lots worse without the medicine. Which is why we're waiting till he's back in Chicago closer to his doctor.

From there we'll assess whether to do the more invasive biopsy.

Inconclusive

From what I've read, an inconclusive biopsy means that not all cells look normal, there's just not enough to definitively diagnose it.  One possible next step is a more invasive surgery called a mediastonoscopy which is performed by a thoracic surgeon.  We'll post more details when we know more about this.

Happy April Fools...

Afraid the earlier post was no joke; but I thought I'd leave today with a smile - see New! Gmail Custom Time for a great April's Fool 'feature' for those of you with gmail. :-)

Inconclusive

Shawn's doctor just called - he didn't have much time to talk tonight but knew we were eagerly awaiting results, so wanted to at leave give us the short version - which is that the results are inconclusive. No positive finding of a carcinoid but also no way to rule one out.

We'll be talking more in the next few days about what is the best next step. In the meantime, we'll just have to stay for a little longer in the Waiting Place. Turns out there are lots of rooms there; we'll be moving from the the short term (intense) wait room back into the longer term wait room!