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/

My friend, Paul, sent the link below. Seems very inflammatory to mention that we may be seeing the end of chemo, but that seems the nature of cancer research. What is today’s clinical study is tomorrow’s treatment pattern. When you think about the power of the immune system, cancer treatment moving away from chemo and more toward strengthening the immune system sounds like “personalized” treatment.

If you or someone you love is in the throes of a cancer battle, you may want to read the CNN article below. Also, within the article there are links to TIME Magazine articles with additional information. It is very hopeful.

I’ve talked with my oncologist about this latest move toward building a stronger immune system to fight the cancer and he was very informed and looking forward to turning these clinical studies into practical application with great success rates.

 

CNN.com

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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

Routinely, after I have an appointment with my oncologist, I send out a routine message to family members. It is usually short, sweet and to the point. Something like this:

“Just had a meeting with the oncologist after a CT scan and blood work. Still no pain; no discomfort; no symptoms. Oncologist says keep doing what you’re doing.”

So, for family and friends who read this, they will reach out to either me or Patti and ask: “So, what is he doing? How come he’s still so healthy after more than a year since the stage 4 pancreatic cancer diagnosis?”

"Who are those guys?"

Every time Patti tells me a friend or family member has asked her these questions, it makes me think of one thing: the scene from Butch Cassidy and the Sundance Kid where Butch and Sundance have blown up the safe in the train and are being chased by the railroad detectives. Butch and Sundance keep running over hill and canyon, prairie and forest, and still the detectives keep coming after them. At one point up on a mesa, Butch looks out and sees the posse still coming after them full force. He looks at Sundance and says, “Who are those guys?”

In my case, I know who “those guys” are — little “bad juju cells” as Johnny Weissmuller would say in his role as Jungle Jim.

Outside of the praise I give to the Almighty for his constant protection, I think there are some basics that I have learned over the past year.

1) Keep your immune system strong. When I was first diagnosed, I started a routine of building up my immune system. This included laser light treatments, detoxification of the immune system, and strengthening the immune system through appropriate holistic nutrients and supplements. I think that helped me tremendously. The Center for Holistic Healing here in Dallas helped.

2) Know what to eat and what to skip. Among the most dramatic things that I did was to change my diet. Well, let’s say I’m TRYING to change my diet. At times, it’s hit and miss. What I mean by changing my diet is that I used to eat quite a bit of red meat. And, as anyone who has worked with me at my various places of employment will attest, I am a 1000% sucker for sugar. Chocolate, really. I used to spend afternoons at the office walking around, grazing for sugar. And, when Patti and I were researching pancreatic cancer, we discovered there were certain foods that PROMOTE growth of the cancerous cells. BAD JUJU. These include red meat and sugar and some processed foods with ingredients you can’t pronounce. I try to stay away from these with various levels of success … and failure.

And, as you may imagine, there are foods you can eat that will retard or slow the growth of these bad juju cells. Those foods include beau coups of veggies, such as broccoli, cabbage, turnips, Brussel sprouts. It’s a good thing that I love all these guys.

The ideal diet for me will have loads of these veggies, and no meat or sugar. We’ve given up soft drinks for tea and water and some coffee. But, I occasionally still have a glass of wine. Don’t drink much beer any more, and I used to have my fair share. I realize that with the wine comes sugar, so I keep that in mind when I DO choose to have a glass.

By the way, please don’t infer I am “preaching” about this. I’m certainly not one to tell others what to do, but since people have asked what I do, this pretty much sums it up. I still have those cravings for a scintillating Fuddrucker’s burger, but I now ask for a vegan version. And, I am trying to dramatically reduce my intake of chicken and fish.

Powerful content

Recently, my sister-in-law, Nina, showed Patti and me a video titled “Forks over Knives.” It was truly amazing and a life changer. The video explains the value of adopting a plant-based diet. Much like other diet and nutrition vehicles, this doesn’t attempt to “sell” you anything but a healthy lifestyle. The businesslike making of points in this video really appealed to me. I don’t like preaching, and this did not come off that way to me at all.

I am not trying to sell anything here at all, but if you want to know more, check out: forksoverknives.com.

3) Exercise some. Yeah, I know this just makes sense. But, for me, it’s easier said than done. I love to sit in front of my computer and write. Things like this fightingdamien blog, or the novel I’m crafting. But that is very sedentary. Do I like treadmills? No, but I know exercise is important. I know there are benefits from hitting the gym, I’m just plain lazy, most of the time. So, do I do well at exercise? No, but I’m trying to do better.

4) Get rid of stress. Ironically, I think this has had a tremendous amount to do with my emotional and physical states. Before cancer, I was a consultant. Lots of travel, loads of pressing deadlines, quick turnarounds, long hours, unruly schedules. At times, that work environment was very rewarding. I like being busy. I like being part of success. I went from work weeks that were routinely 60+ hours with loads of travel, to 0+ hours of work and no travel. It was a very dramatic drop in stress — from bunches to none. Health is my primary concern now, so I do what it takes to stay healthy. Like Martha says, “That’s a good thing.”

I no longer work, except take out the trash, routine chores and mow the lawn. And, occasionally when there is something I know I need to do, but don’t want to do, I pull out the “cancer cough.”  Right in front of Patti, I will show my sad eyes, put my hand near my mouth and cough a very faint, weak, barely audible or even noticeable cough that is designed to elicit her sympathy. It doesn’t work, but it does generate a laugh or two between the two of us and we have heard that laughing causes cancer cells to die. Don’t know if it’s true, but it sounds like it COULD BE true.

I know that getting rid of stress is easier said than done. But there are ways (see number 3 above) to rise above the stress. Making sure you take time for yourself during the day is important. There are loads of stats about the importance of taking time for “you” during your busy day. Sometimes, it’s just a few moments, but having the feeling that you are in control of your day rather than an employer, is a tremendously gratifying and rewarding feeling. Whether it is just going outside for a walk around the block at work or at home, for just a few moments, that helps to ease the stress and help you feel in control.

Contentment: a lab in his pool

Frankly, I think this item has had more impact on my health than just about all of the above combined. A friend told me the other day that he thought I looked very content. I’ve thought about that a lot since then. I am content, very content. I don’t worry like I used to — about everything. Years ago, when I was putting in those long weeks at work, and fitting family around work, I never felt like I knew how the world worked, or how I fit into it. It was a huge foreboding feeling.

Today, I am thankful for this cancer. Yep, I sure am. This past year has helped me become content. I am very content. For the first time in my life, I DO feel like I know how the world works, and I feel like I know how I fit in it. Content feels really, really good! And that, my friends, is worth all the gold in Fort Knox. God bless you all!

Today, Patti and I had a meeting with my oncologist, Dr. T.

I had not seen Dr. T since my last appointment in October 2011. Then, he gave me a glowing report. The tumors were stable, no growth or expansion of the cancer to other organs.

Today, I got a similar report. To God be the glory.

I have to admit, since Dr. T has extended the time between office visits, I approach each meeting with a bit of trepidation. Certainly, since my last visit in October, we have had a tragic loss — a death in the family that required daily visits to the hospital from late November through early January.  That was a very stressful time for our family.

So, I was very relieved to see that, even with the stress, the tumors have continued to remain stable. I am so thankful, and continue to thank the Lord for my blessings.

So, work continues on the book, my love of writing has not subsided, and Patti and I are planning to take a quick trip soon to provide some additional stress relief.

I thank you all for your prayers and good wishes. I hope you know that I return your love, your goodwill, and pray for your health and well-being. Thank you.