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.

http://www.cbsnews.com/8301-504803_162-57607276-10391709/parenting-a-gifted-child-lessons-from-the-andrakas/

For the past several months I have been taking chemo dosages to stem the growth of tumors I have in the liver and pancreas. So far, the chemo seems to be helping. Taking chemo is not without trepidation. The sheet they gave me to review BEFORE I took a chemo dose was so damned intimidating. The side effects seem to be never-ending, but the benefits appear to be just one — slow or reduce the growth of tumor cells. Nothing more than that.

The fog of chemo can be a good thing ...

The fog of chemo can be a good thing …

One of the items on the list of  potential side effects was the “fog” of chemo. Sounds a bit like fog of war, doesn’t it? Well, it is a bit like fog of war. Every time I hear fog of war, I tend to think of the Vietnam war, LBJ, Robert McNamara and any of those other folks where that term may have derived. Plus that term seemed to be used to avoid any prosecution for any decisions made during wartime. At least, that’s what it seemed to me.

Well, I am no politician, but I think I have a handle on fog of chemo. I think it is a good excuse for cancer-boy here to get out of something he doesn’t want to do. Kinda like — just plain forgetting! It’s on the sheet and Patti read the sheet just like I did. So, when the trash needs to be taken out and I don’t feel like doing it, I can just give everyone this blank stare, like I am a little dizzy, or a little distracted on my feet, and one of the kids will jump pretty quickly to dispense with the trash.

As they say about Momma not raising any fools, well, my fog of chemo excuse has worked just once — with the trash. Other times when I truly felt some fog (like not being able to come up with a fact or use the correct word or finish a story) none of the family members seemed to think I was foggy. They just figured I was using the excuse of just plain getting older. “Dad’s telling that story about JD and Casey again!” “Honey, you have a glass of water right there next to you.” “Your pills are where they always are — in the cabinet. Duh.”

I say this just to offer a sage bit of advice who may be taking chemo. Fog of chemo will likely work, maybe, once, but there is an even more likelihood that fog of senioritis will never work at all.

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

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damian

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.”

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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

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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.

Greetings from a hospital room in Austin, with a beautiful view of downtown the weekend that Formula One racing comes speeding through the Texas Capital.

I am here to try to iron out some digestive issues. It could be that my nemesis, damien, has decided to give me long-deserved attention. And, when he chooses to give me some attention, he can be a very focused little fellow.

I will try to spare you the gory details, but I have been losing a little weight here and there the past six months or so. When I started the cancer fight, I was a little hefty at 187 lbs. At the weigh-in when i came to the hospital, I loaded up that scale with a hearty 149 lb. girth.

I have a bile obstruction that is not uncommon to pancreatic cancer patients. I need to have a stent inserted to clear that pathway. After numerous CT scans and an MRI, my gastro guy is ready to do the work in the morning. He will insert a camera and take a look down my esophagus and into my digestive system. Once the stent is inserted, then my urine, which now looks like a bright California sunset (red not yellow) will return to normal. And, it will have a pathway as clear as our F1 racetrack.

And, having this procedure will give me additional choices for chemo,which appears to be a potential next step.

Stay tuned for further notice. I just remember that “with God all things are possible.”

By the way, here is a photo from the hospital room of that doctor who is assisting tomorrow and her meal prep. God bless you all and your prayers.

20121118-073613.jpg

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 http://www.pancan.org. 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

Another visit to the oncologist … and continued good news.

When we met with Dr. Trumbly this afternoon, I was a bit apprehensive. Recently, when Patti and I had been feeding and watering the horses on the ranch here, it was exhausting and I did not know how this exhaustion would affect the cancer numbers. And, I didn’t know whether the exhaustion was due to the heat (over 100 degrees for 30 days), the exertion (lifting and moving seven-eight bales of hay two-to-three times a day) or my age (60-year-old doing stuff that normally someone in their 20s would be doing), or whatever.

I don’t think I have sweat this much in years. I’m just a wuss.

But when we met with the doc, he had nothing but good news. The c-19 markers that he uses to determine spread and/or growth of the tumors in the pancreas and liver continue to drop. The last visit they were 190, and today they were 180. Months ago, they were at their highest — 212. Dr. Trumbly said that normally these markers run between 0-35 for someone without this cancer. So, my numbers at 180 are high, but more advanced patients have numbers that run in the thousands, so we pray for stability. But these marker numbers are dropping, and that’s a good thing.

How ironic is this? We revel and celebrate when we have LESS of something instead of MORE. Hell, imagine how much I would celebrate if these numbers were to drop to the 0-35 range. Drinks are on me!

And the good news continues. From this point forward, I will see Dr. Trumbly every THREE months instead of every six weeks.

Thanks to all of you for your good wishes, prayers and staying in touch. I love you all.

Cancer-boy may be lifting more bales and totin’ more water if it means these numbers continue to fall.

To God be the glory!