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.

The original Broadway play poster for "Hair"

The original Broadway play poster for “Hair”

When I was a kid in college, a play came out on Broadway in 1968 that was an instant and controversial success — “Hair: The American Tribal Love-Rock Musical.”

A product of the hippie counter-culture and sexual revolution of the 1960s, several of its songs became anthems of the anti-Vietnam War peace movement. The musical’s profanity, its depiction of the use of illegal drugs, its treatment of sexuality, its irreverence for the American flag, and its nude scene caused much comment and controversy. The musical broke new ground in musical theatre by defining the genre of “rock musical”, using a racially integrated cast, and inviting the audience onstage for a “Be-In” finale.

Hair tells the story of the “tribe”, a group of politically active, long-haired hippies of the “Age of Aquarius” living a bohemian life in New York City and fighting against the draft into the Vietnam War. Claude, his good friend Berger, their roommate Sheila and their friends struggle to balance their young lives, loves and the sexual revolution with their rebellion against the war and their conservative parents and society. Ultimately, Claude must decide whether to resist the draft as his friends have done, or to succumb to the pressures of his parents (and conservative America) to serve in Vietnam, compromising his pacifistic principles and risking his life.

The show ran for 1,750 performances on Broadway. Simultaneous productions in cities across the United States and Europe followed thereafter. At the time, I saw the production in San Antonio. It was the first play I ever saw and the music and story were just phenomenal. We even got to participate in the “be-in” up on the stage at the conclusion of the play. That was an even added plus to make it such a memorable event for me.

But the music of the play never went away. I have just never forgotten “Aquarius,” “Let the Sun Shine In,” “Hair,” “Easy to be Hard” and other music.

Getting rid of the stubble ...

Getting rid of the stubble …

So, it was not that unusual that all these songs came swirling through my head today — the first time I have sat in a barber’s chair in decades. Most of you who know me know that I have been follicly challenged as long as I can remember. Either Patti or I would trim my hair from my bald head whenever it needed it. I just never had enough hair to warrant paying for a haircut.

But there are late developments.For example, last month I started chemo with gemcitabine and abraxane and the mix of these two drugs has caused my hair to fall out.  Well, most of it. One day in the shower, what little dark hair that remained fell out, leaving only white hair. Since then, the white hair has slowly disappeared leaving just a little bit of ugly stubble that left me with a “cancer-y” look.

The tool of the day -- the razor blade

The tool of the day — the razor blade

So, today I entrusted a ‘professional’ to use a straight razor to get rid of what little stubble that was left on the head. Now I am completely bald and the part of the head that the barber shaved feels more like a baby’s bottom that the top of a 62-year old man’s head. My understanding is that as long as I continue with the chemo, the hair loss will continue.

I don’t mind, just as long as I have a little sunscreen wherever I go.

Chrome dome

Chrome dome

Gimme head with hair
Long beautiful hair
Shining, gleaming,
Streaming, flaxen, waxen

Give me down to there hair
Shoulder length or longer
Here baby, there mama
Everywhere daddy daddy

Hair, hair, hair, hair, hair, hair, hair
Flow it, show it
Long as God can grow it
My hair

Let it fly in the breeze
And get caught in the trees
Give a home to the fleas in my hair
A home for fleas
A hive for bees
A nest for birds
There ain’t no words
For the beauty, the splendor, the wonder
Of my…

Hair, hair, hair, hair, hair, hair, hair

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

__________

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.”

__________

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.

The other day, I mentioned that I had run into a glitch trying to explain to folks what else a person can do with lemons. Well, I can imagine that most of you came to a very easy conclusion about what you can do with lemons. And this post has come to you via pony express. As I mentioned, I am diabetic and don’t really like lemonade, anyway, but we can still have fun with lemons.

Here’s how …

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