Open Access advocate and 16-year-old Open Scie...

Jack Andraka (Photo credit: Open Science Federation)

Tonight, on 60 Minutes there was a story about a 15-year-old science prodigy who is working on a way to detect early the presence of pancreatic cancer in patients. Most of the time, patients, like myself, discover they have pancreatic cancer after it has already metastasized to another organ in addition to the pancreas.

This young man’s name is Jack Andraka. The story on 60 Minutes focused on how this teenager, who has a long-time love of science, had lost a friend/relative to pancreatic cancer and decided he wanted to develop tools that would help doctors detect pancreatic cancer early before this cancer moved to other organs.

He apparently developed his approach, put it into a proposal and sent it to over 100 cancer research organizations. Only one, MDAnderson in Houston, Texas, decided to give the young man a try.

He has had some remarkable results, which in turn has turned him into a celebrity, of sorts — four times to the White House this year alone. But his approach for early detection is showing some tremendous promise.

If you want to learn more about Jack and how he has proceeded thus far, click on the link below for the story on 60 Minutes Overtime. Congratulations to Jack and his very supportive parents.

Folks, the Chemosabe gang is at it again.

I started chemo again today. You may recall that I had chemo with the very popular pancreatic cancer drug, Gemcitabine, back in November. At the same time docs put a stent in my bile duct. Since the two chemo doses came so close to when I had the stent placed, it was hard at the time to tell whether the side effects I was feeling at the time were from the stent placement, or the chemo.

So, I stopped the chemo at the time to see if I could improve my strength, which I have.

I went off hospice on Friday. The people at Hospice Austin could not have been any better. But since hospice is designed to help the patient who has less than six months to live, the hospice doctors said that I no longer fit into that category.

Carlos Santana

Carlos Santana (Photo credit: Wikipedia)

Coincidental with all this is that during 2012 there was a long of talk in the pancreatic support groups about some great results coming from clinical trials with a drug called Abraxane. When I first heard the name, I thought it was the name of an album by Carlos Santana. I was slightly off; it’s called “Abraxas.”

Abraxane is very popular with breast cancer patients because it has helped those patients for their treatment and recovery. Fourth quarter 2012 I started hearing much more buzz about how Abraxane was showing strong results in clinical trials for pancreatic cancer treatment. It was not yet approved for pancreatic cancer patients, though. Then shortly after dawn of 2013, it was approved by FDA for treatment for pancreatic cancer patients after years of developing good results for breast cancer patients.

Meanwhile, after the stent placement I started getting stronger and putting some weight back on. I was feeling stronger.

So, the first three Tuesdays of every month going forward I will be getting chemo with Gencitabine and Abraxane. The only pain associated with the chemo is that applying the needle to my port hurts for that quick moment of insertion, but the chemicals don’t hurt during infusion. But, as we go forward and I get more doses under my belt, who knows what effect the chemo will have. Every treatment is different for every patient.

A special note: Those of you who have been following this fight with damien know that Patti and I have forged through this fight with a lot of logical thinking but a larger part of faith and prayers. I know there are family and friends who pray for us, and I made the decision to try again after a lot of prayer. This does not in any way mean that I have lost my faith. After considerable thought and prayer, I felt like this was an answer to prayer.

It wasn’t an easy decision. The sheet the doctor gave us about Abraxane shows about a 10:1 side effect ratio. Potentially, lots of the suckers. Things like appetite loss (who cares about that, I never have had one any way?), nausea, lose my hair (you can use this space to enter your joke about my potential hair loss), and others. I don’t want to bore you with other potential things we’ll be looking for.

As always, thank you all for your prayers and well wishes. We really do appreciate them. God bless you all.

Here are just a few odds and ends from a busy week of treatments. Sorry, for its length, folks.



Since Patti and I have started this posting about my battle with pancreatic cancer, loads of friends and family will tell us to “kill that snotty little bastard damian” or some other such directive. I still don’t like giving the respect that a capital D would do.

After waging this war with the snotty little bastard, I would like to weigh in with a bit of a”postscript.”

I believe damian has already lost this war. The snotty little bastard is a loser. Here’s why. This whole cancer fight is really a fight between good and evil. And damian sure doesn’t represent good. What damian really wants me to do is lose faith in God, or blame God for this cancer, or be angry with God because I have this cancer. In short, lose faith in a loving God.

That is just not going to happen.

I believe in a loving God that is happiest when we are happy, worry-free, care-free and feel His presence all around us. Here’s an example from 1 John 5:14:

“This is the confidence that we have in our relationship with God: If we ask for anything in agreement with His will, He listens to us. If we know that He listens to whatever we ask, we know that we have received what we asked from Him.”


A favorite song — Asleep the Snow Came Flying

I don’t think it is new to say that the way we live our lives can be called the music of our life. Look at any good song and life is woven through its melodies, lyrics and notes.

While I certainly agree with this, I also believe that music stirs the soul, moves the body and affixes itself to our atoms and corpuscles. It becomes us.

imagesTo set the stage for one of my favorite songs, let me take you to Beartown Lakes Park, near Chagrin Falls, Ohio. It’s a very small park. Blink twice and you miss it.  First you go down one gravel road, then you turn down a dirt road and when you get to the end of the dirt road, you are there. It has a beautiful tranquil lake, loads of surrounding trees of a wandering variety but loads of maples, a dike at one end that serves as a great sliding surface for the little buggers in late Spring and Winter. It has a meandering hiking trail that goes around the lake and a good portion of one side of the lake is covered by a wooden walkway. In short, it’s one of my favorite places on earth. When Patti and I lived there, we’d go to Beartown at least once every season.

One year, Patti and I were kidless — they were away with friends — and we headed to Beartown. It had been snowing outside, sky was completely covered and the snow was the slow falling kind that seems to put a muffled blanket on any sound. When we got there, we noticed that all the trees were somewhat bare, but starting to get a gentle covering of slow, lightly touching snow. The ground was white. No breeze to speak of. We could see each other’s breath.  By this time in Winter, the lake was frozen. Our footprints were the only ones showing on the trail and the only sound anyone could hear was the crunch of booted feet on the snow path.

We had a great visit to the lake that afternoon, sat on a bench to watch the quiet snow come to rest on the ground. While we were talking, I couldn’t help but throw in a verse or two of Robert Frost’s Stopping By the Woods On a Snowy Evening. I just love that poem. Because of that day, whenever I hear this following song from Tim Story, I am overwhelmed with the beautiful sentimentality that Patti and I experienced when we went for that walk along Beartown Lakes. While some may say it’s a bit dark, I don’t think so. I think it accurately reflects the quiet stillness of an overcast day when the snow falls in abundance, but steadily quiet and, perhaps, timid.

So, here’s Asleep, the Snow Came Flying


First chemo treatment and stent placement

Last Wednesday, we spent about an hour with Sharon at Texas Oncology. She basically gave us a pep talk about what chemo can do, what it can’t do, what some side effects could be and the impact on quality of life. She was very direct and very good. There was no question we had that she did not have an answer. After learning all we needed to know about Gemzar, we moved to the infusion center, where I was to get my first round, along with many others who were already in their infusion process.

When I walked into the room, the first thing that came to mind was riding alone on a train through Europe in 1972, reading Alexandr Solzhenitsyn‘s Cancer Ward. The novel tells the story of a small group of cancer patients in Uzbekistan in 1955, in the post-Stalinist Soviet Union. It explores the moral responsibility — symbolized by the patients’ malignant tumors — of those implicated in the suffering of their fellow citizens during Stalin’s Great Purge, when millions were killed, sent to labor camps, or exiled.

So, as you can imagine, the description of the wards was dire, grim, ghastly. That was not what I saw at Texas Oncology. There were small units of five chairs in a semi-circle, attended by one nurse each. Everyone appeared comfortable. Either a friend or family member sat next to many patients. It was mostly very quiet except for the nurses behind a counter that served as a gathering spot for all the nurses tending to patients. It was so good to see people who did not feel uncomfortable or in any pain. One man lay next to me and he pulled his skull-cap down over his eyes and slept through his treatment. A woman next to him was noticeably shivering. Her lips were quivering and her body soon followed suit. But very quickly, attendants brought her a warmed blanket and she quickly stopped the quiver and seemed to fall asleep quickly.

Patti and I waited and soon the nurse administered the lead wire to the port in my right upper chest. Most nurses who deal with my port “gingerly” administer the leads, or flush the port, but gingerly indeed. Thomas, my nurse who has been doing this work since 1985, just rammed the needle into the port. It so shocked me that I forgot it hurt for a moment.

When the chemo was complete an hour later, we simply got up and left. No drama, but as I left the infusion room, I turned around to notice other patients coming in, others leaving. Cancer is just as much a part of life as laughing or weeping. We will see if any side effects manifest themselves. We pray not.

The stent — On Friday, I was admitted to Seton hospital to have a stent placed in my bile duct to eliminate my yellow cast and to allow for easier discharge of waste naturally through the bile duct. An hour on the table and an hour in recovery and I was on my way home. They were successful, but they had to be “aggressive.” That’s short for: “It’s gonna hurt like hell afterwards.” Which it did.

First couple of days, no sleep because I could not find a comfortable position since my chest hurt. But it’s Monday and I’m starting to feel better and the chest pain has, for the most part, subsided.

Three 'gingers' -- JD, Casey and Patti -- say the pledge of allegiance before the walk.

Two weeks ago, Patti, Casey, JD and I participated in the Pancreatic Cancer Fun Run/Walk on a Saturday morning in downtown Austin. We were joined by friends Mike, Jess, Kaedon, Brady, Mason and Mary.

We were also joined by a the spirits of a number of contributors. When we announced that we were going to participate in the fun run/walk, we gathered contributions and raised just about $1,000 for the walk and pancreatic cancer research. God bless you all for your generous contributions.

It was a real blast to do this. For participating, everyone got a dark purple Purple Stride T-shirt and a number. But not me. I got a light lavender “Survivor” shirt and a number. I wore the shirt proudly that day and I wear it now. There is something about “survivor” that is really comforting. They even took a photo. There were 7-8 of us that were survivors of the 600 that gathered for the walk.

And, as you might imagine, it was a very emotional walk. Walking along the 3-mile course, I noticed that many of the folks who were walking with purple shirts, had special paper placards pinned to their shirts. “I am walking/running for …” Then, the individual used a Sharpie to write in the name of the person, past or present, for whom they are walking.

Just about every walker had a placard. Most were walking for close friends or relatives who were presently undergoing treatment or had died from the disease. Frankly, it was a little disturbing to see people walk by enjoying the cool Fall weather, chatting with friends, walking with pets, but doing so with the name of a loved one attached to them. These folks have a common purpose. They will do what they can to rid the world of this terrible disease.

I am a very lucky man. I know it. To have been diagnosed with stage 4 pancreatic cancer over a year ago, been told that I had less than 3-months to live, I thank God every day for each day. But on this walk, I saw reminders all around me of those for whom “every day” has run out. But there were definite bright spots.

This is the main one. The fact that there were 7-8 survivors in this group is amazing. A year ago, three years ago, there wouldn’t have been 7-8 folks in that category. There would have been fewer.

And, today, the world is a much smaller place. Our FDA is not the be-all and end-all for treatment regulation. Some here will argue that we will see cures when  the drug companies want there to be a cure.  Maybe.

There are treatments occurring in other countries that are recording amazing results. And, remarkable activities are taking place here in the U.S. that are seeing real results — many of a homeopathic nature. So

Casey and Kaedon are getting ready for the walk

far, I have been fortunate not to have radiation or chemotherapy.

I celebrate every day with faith and laughter. Patti and I joke that laughing kills cancer cells. She gives me something to cause laughter every day. So, together we’re killing the cancer cells, slowly but surely. And, I absolutely believe that every day I am here is a blessing from God.

But enough about philosophy, here are some photos from the fun run/walk in Austin. God bless you all and your loved ones.

Kaedon and Casey lasso a colorful steer along the route

I just wanted to thank the important people

I left a memory note, along with many other walkers

Mason and Jess finished with great vigor

Kaedon and Patti walk through the finish line

JD and I cross the finish line

Brady, Jess, Kaedon, Casey, Mary and Patti take to the streets

Mary and Casey were happy to walk

Brady shares a secret with Dad along the course

Mike, Brady, Jess, Kaedon and Mason are ready to walk

Mason is just ready for someone to push him along the course.

Yesterday, as the world knows, Apple founder Steve Jobs died.

He died of complications of pancreatic cancer. He and I have this devastating disease in common.

If you have been following my treatment patterns for pancreatic cancer, you know that, for me, everything is stable right now. That is good and to God be the glory.

What follows is a CNN article that examines Jobs’ history of his treatment for pancreatic cancer. If you are even slightly interested in his kind of pancreatic cancer (very rare), his treatment patterns and his history of dealing with the disease, please read on. The more we all know about the difficulties of pancreatic cancer, the more we can take a step to fight it and overcome it for others. Rest in peace, Mr. Jobs.

Editor’s Note: The report was originally published August 25, 2011, the day after Steve Jobs stepped down as Apple CEO.

(CNN) — Steve Jobs has been notoriously private about his health, but as he steps down as CEO of the company he helped invent and re-invent, speculation abounds that he has gotten very sick.

In his resignation statement, he alludes to his inability to continue in his role at the company.

“I have always said if there ever came a day when I could no longer meet my duties and expectations as Apple’s CEO, I would be the first to let you know. Unfortunately, that day has come,” Jobs wrote in a letter addressed to the Apple Board of Directors and the Apple Community.

Neither Jobs nor the company has revealed concrete details of his condition. Based on the public information about his health history, there are many possibilities, including cancer recurrence and liver transplant rejection.

Steve Jobs: From college dropout to tech visionary

Jobs revealed in 2004 that he had a pancreatic neuroendocrine tumor, kind of pancreatic cancer that tends to grow slowly. It’s relatively uncommon, representing only 5% of all pancreatic tumors. Diagnosis usually happens when the cancer has advanced; tumors are often detected after the cancer has spread to the liver, said Dr. Craig Devoe, pancreatic cancer specialist at the North Shore-LIJ Health System in New Hyde Park, New York, who did not treat Jobs.

Treatment options include surgery, hormone replacement, chemotherapy and radiation.

A closer look at Steve Jobs’ health

In a rare moment of openness about his condition, Jobs revealed a few details of his diagnosis in a 2005 speech at Stanford University’s commencement ceremony.

Jobs recalled having a scan one morning in 2003 that showed a tumor in his pancreas and doctors telling him “this was almost certainly a type of cancer that is incurable and that I should expect to live no longer than three to six months.”

“Later that evening, I had a biopsy, where they stuck an endoscope down my throat, through my stomach and into my intestines, put a needle into my pancreas and got a few cells from the tumor. I was sedated, but my wife, who was there, told me that when they viewed the cells under a microscope, the doctors started crying because it turned out to be a very rare form of pancreatic cancer that is curable with surgery. I had the surgery, and I’m fine now.”

But the timing wasn’t that clear-cut. In between diagnosis and surgery, he pursued an alternative therapy approach for nine months, hoping a special diet would allow him to avoid surgery, according to a 2008 Fortune magazine article.

On July 31, 2004, at the Stanford University Medical Clinic in Palo Alto, California, Jobs underwent surgery to remove his tumor.

“This weekend I underwent a successful surgery to remove a cancerous tumor from my pancreas,” Jobs wrote in an e-mail to Apple’s staff the next week. “I will be recuperating during the month of August, and expect to return to work in September.”

Reports have suggested that this surgery was a Whipple procedure, a complex operation that involves removing the “head” of the pancreas in addition to the gallbladder and parts of the stomach, bile duct and small intestine. This can result in digestive problems and weight loss.

“The hope is that you remove all visible disease,” Devoe said.

A timeline of Steve Jobs’ career

Steve Jobs resigns as CEO of Apple

Tim Cook new Apple CEO

Apple’s future without Steve Jobs

Jobs said in January 2009 that doctors said he dropped so much weight because of “a hormone imbalance that has been ‘robbing’ me of the proteins my body needs to be healthy. Sophisticated blood tests have confirmed this diagnosis.”

The former CEO never disclosed any more details; doctors unaffiliated with his care said a variety of conditions could have caused the weight loss, including cancer and diabetes.

If related to his a recurrence of his cancer, a pancreatic tumor would typically lead to an overproduction of hormones including glucagon, which results in weight loss if produced in excess, Dr. Jeffrey Mechanick said in 2009. Mechanick, a clinical professor at Mount Sinai Medical Center in New York, was not involved in Jobs’ care.

That same year, Jobs underwent a liver transplant in Tennessee. Dr. James D. Eason of Methodist University Hospital Transplant Institute announced in June 2009 that “Mr. Jobs is now recovering well and has an excellent prognosis.”

The odds are against the pancreatic neuroendocrine tumor cancer patient who has a liver transplant, but close to half of the patients may be free of cancer four to five years after the transplantation, said Dr. Simon Lo, director of the Pancreatic and Biliary Diseases Program at Cedars-Sinai Medical Center in Los Angeles, who did not treat Jobs.

Still, relatively few liver transplants have been performed as a treatment for neuroendocrine tumors, making it a somewhat experimental option, Devoe said. If the patient has a lot of disease in the liver, it can extend life, but there’s no guarantee that this will remove all of the cancer remaining in the body.

And immunosupression drugs required after a liver transplant could allow any remaining cancer to grow faster, Devoe said.

In rare cases, immune suppression itself can also cause cancer, said Dr. James Yao, oncologist at the University of Texas M.D. Anderson Cancer Center in Houston, who has not treated Jobs.

On the bright side, there are two new cancer drugs that have been approved this year that may apply to someone in Jobs’ situation, experts say.

Everolimus is available to treat pancreatic neuroendocrine tumors and prevents transplant rejection. But there are serious potential side effects, which may include lung or breathing problems, infections and renal failure, which may lead to death.

Sunitinib malate is prescribed for the treatment of pancreatic neuroendocrine tumors, kidney cancer and GIST, a rare cancer of the bowel, esophagus or stomach. This too carries its risks; it can cause liver problems and death.

“The good news that this is an area where there are a lot of advances,” Yao said.

First, a quick update. Health readings continue to be good. Tumors are stable or shrinking. Still feel good and cherish every day as a special gift.

Back in August, I had a special delight — celebrating my birthday with very good friends and family at a Round Rock Express game at the Dell Diamond in Round Rock, Texas. The game was sponsored by a pancreatic cancer research group called Pan Can. Part of the sale of each ticket went to pancreatic cancer research. Patti had sent word out to friends in Austin to alert them and invite them to come to the game — as a surprise to me. I didn’t know we were going until much later.

I have always enjoyed a baseball game as a way to celebrate a birthday.

So, it was a special surprise to get to the game and find our good friends the Appletons (Wayne, Jen, Maddie and Kip), the Rogers (Louis and Linda), the Macys (Jeff and Megan) join us for the game. So the camaraderie of visiting with good friends made the night a special one. Plus the game was pure joy.

At one point in the 3rd or 4th inning, the visiting team from Florida was ahead 9-2. If you looked around the stadium, you would notice people heading up the aisles thinking this was a lost cause. Well, as commitment, dedication, hard work and skill would have it, the Express came back to win in the bottom of the 9th — 10-9. What an excellent way to celebrate a birthday — with a win.

As an added bonus, good friends Randy and Terry managed to put my name up on the scoreboard as one of the many celebrating birthdays that day.

By the way, if you want to learn more about pancreatic cancer research, go to There is also a walk/fun run for pancreatic cancer research on October 22 in Austin. If you want to join us, we will be there. Of course, I believe there will be walks/fun runs across the country on that day. You can support pancreatic cancer research by participating in a city near you.

In the meantime, here are a few photos from our night at the Diamond. Good health to you all.

The ladies in purple: Casey, Megan, Patti, Jen and Maddie

Name in "lights" -- also notice the time and temperature. Only special friends will show up despite the heat!

The Aldridges at Dell: Patti, Casey, me and JD