Faith


The other day, Patti had to run some errands. I went along, but as is pretty customary, she let me off at Half-Price Books while she took care of things.

Half-Price Books will sell you used books at discounted prices, and they will buy your used books, too.

I noticed when I entered the store there was wonderful music playing overhead. Thank goodness, no hip-op or rap music, but lots of 60s and 70s album music. So, not necessarily the top-selling song from the album way back when, but another popular song or two from the album. I loved it.

It was a very diverse set of customers that day: moms with children; older couples; teenagers; a couple of guys dressed like they just got off the construction crew; and, a guy in a suit. Still a pretty good, random set of folks all looking to read. Excellent.

I wandered the aisles for a while, picking up a book here and there that I wanted to look at, and listened to the music. After about 45 minutes, I had two-three books and I found a chair that could afford me a view of most of the store. The chair was against the outside window, between two large twirling racks of calendars. There was another chair on the other side of the calendar rack on my right.

As I sat there looking at the books and the customers, I heard the Beatles’ song I Will from the White Album playing overhead. Wow! Incredible song. Not the best one on the album, but, hell, all of them from the White Album were wonderful.

As the song played, a Hispanic father holding two little girls sat down in the chair on the other side of calendar rack. Who knows how long I’ve loved you. You know I love you still. He began humming to I Will and I could hear him. Straight ahead in the aisle of books directly in front of me (the fantasy section), a thin man with gray hair and T-shirt, began singing the song in a fairly low voice. His voice coincided directly with the man’s sitting next to me. He patted his hand in rhythm to the song on his jeans. For if I ever saw you, I didn’t catch your name.

At that moment, two older folks came in — about my age. He had gray hair, with shirt tucked in and leather shoes. She had closely cropped hair and was shorter than him. The two started looking at the first display table inside the door, and I could see them from my perch. The man started moving his right hand as if he were a conductor directing an orchestra to play the song while looking at the books. But it never really mattered, I will always feel the same. Then, he started humming the song, too.

So, as I am sitting there, there were three people who did not know each other, each with their own agenda, connecting through a song that was popular in the 60s. For a few moments, I watched all of them. They kept up their humming and low singing until the Beatles finished the song. And, I just smiled through all of it.

Love you forever and forever
Love you with all my heart
Love you whenever we’re together
Love you when we’re apart.

That’s what makes for thrilling days.

Susan Vento

Susan Vento

Occasionally, I see the stories of other cancer victims and how they are dealing with, or surviving, cancer, and feel they are inspiring for other people. Certainly, other people who are suffering through their cancer, or the cancer of a loved one.

Meet Susan.

In late 2000, her husband, Bruce, a U.S. Congressman, was diagnosed with pleural mesothelioma, a very rare cancer caused by asbestos exposure. Her memory of her husband is what inspires her to do the work she does today. She is the spokesperson for the Asbestos Cancer Victims’ Rights Campaign (ACVRC), a national campaign dedicated to protecting the rights of cancer victims and their families.

As an activist, Susan works hard to inspire hope among all cancer victims. Please go to Susan’s website,  http://cancervictimsrights.org/memories-that-inspire-my-story-of-hope/. You can read her inspiring story and see more about the hard work she is doing to help cancer victims, regardless of the nature of the disease. There is also more information about ACVRC as well.

As most of you know, this blog, fightingdamien.com, is primarily about my family’s fight against pancreatic cancer. I never capitalize damien’s name, because I don’t want to give that devil any respect. My diagnosis of stage four pancreatic cancer just passed the three-year mark. I truly feel I am here still enjoying family and friends because of God’s blessings. And, I am thankful to God for the blessing of time he has given us.

Read Susan’s beautiful story. With all the turbulence in the world, we can all use a little bit of inspiration whenever and however it comes.

God bless you all.

 

Over the past few months, when I have discussed my cancer treatment with friends and family, a few have pushed back to ask why I chose to go the chemo route, especially when I had been so against it at the very beginning.

I finally have a good way to answer that. What follows in this posting are two versions of a song called The Water is Wide. There is a James Taylor version and a Karla Bonoff version.

I suggest you listen to them both:

WHICH ONE IS YOUR FAVORITE? (I would really like to know)

Hard to pick one, right? Well, some may say, “I really don’t like the song at all.” Or, “it’s easier to understand the lyrics the way James Taylor sings it, but Karla Bonoff’s version is more emotional for the listener.” Seems a little bit like all the answers are right.

It’s kind of like the chemo, too. Every patient is different. I don’t like the chemo, but it seems to be helping right now. Whenever I go to the infusion center, I never see the same person twice. Everyone is unique and getting their chemo that matches their exact, specific needs. Some are there for hours, some for just a few minutes. Some bury themselves under blankets; others wander around the center. Some will talk their heads off; others are quiet. I don’t think I have ever seen anyone with a sad face, and that is a very real reason I keep going back.

I would just as soon not have any chemo at all but the tumors are shrinking or stable. So, for now, whenever we’re coming into the house late at night after being out, someone needs to be able to glow in the dark and shine a light on the key that gets us in the house. And, I guess that’s me for the time being.

Now, if you want to just plain get up and dance, there just ain’t nothing like the song below to help you do that!!! Isn’t music just about the best thing there can be?

Over this past weekend, my daughter Casey’s boyfriend, Rick Reed, proposed…she accepted.

They were at a winery/restaurant here in the Hill Country and Rick took to the knee.

We are very excited for both of them. While they have not yet set a date, they are very excited at what this next phase of life will be like — together.

Below are Rick and Casey on the day of their engagement. Wow! I get another son and neither Patti nor I had to go through labor. This is going to be fun!

Rick Reed and Casey Aldridge

Rick Reed and Casey Aldridge

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.

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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.

Like I said in the post from yesterday, if life gives you lemons, you make lemonade. But, you see, I am diabetic and lemonade is really bad because of all the sugar, plus I just plain don’t like it anyway.

So, in an effort to be a little bit creative, when I got my lemons this past weekend, I knew exactly what to do with them.

I hope you enjoy it …

Oops, sorry, there are some technical glitches that need to be figured out before I can show you other things to do with lemons. It’s coming … after the glitches. Thanks for your patience.

 

Digestive system diagram showing bile duct loc...

Digestive system diagram showing bile duct location

Here’s an update from the recent hospital visit last Thursday through Sunday:

  • The procedure to remove a bile obstruction Sunday did not work — the pancreatic tumor had so encapsulated the bile duct that the doc could not get past the obstruction to remedy the blockage
  • The doc did offer a couple of alternatives, but suggested that we talk with the oncologist first
  • We have an appointment with a highly recommended oncologist tomorrow morning

The procedure would have made it easier for me to digest food and eliminate the food in a normal fashion. It would have also given me a few more choices if and when possible chemotherapy comes into play.

I want to thank all of you for your prayers and best wishes that have come in over the past few days. God is great!

Stay tuned and I will share with you the next steps after tomorrow’s visit with the oncologist.

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There are some things I learned during this past four days in the hospital:

  • When I am lying in the hospital bed, there is no better feeling than when a family member comes into the room
  • If you feel WELL going to the hospital, all it takes is one night when nurses come in the room at 10:30 pm, 11;30 pm, 3:30 am, 4:30 am, 5:30 am, 6:30 am and 7:30 am to make you FEEL sick
  • If you are swearing off watching news programs, as I am, it helps to have an iPod or iPad to wile away the hours listening to music that entertains you and gives you some rest
  • I find I say a few more prayers when I am in the hospital than when I am not
  • One night I turned out all the lights in the room and stood before the mirror — I was sure I was glowing in the dark after all the CT scans and MRIs that I had had so far
  • When the nurse was hooking me up to an IV fluid line, I asked her if I could have the sack that when it is administering the fluids, the process would leave a “steak and potatoes and Shiner Bock” taste in my mouth. Sadly, she said they don’t make IV fluid sacks like that yet
  • All it takes is a stay in a hospital room to help you remember all the vacations and trips you have taken to ANY place that does not resemble a small room with a bed in it
  • At the end of the day, I felt fully confident that the docs and nurses I met, and who provided me with care, truly had my best interests, as a patient of theirs, at heart.

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As a patient in the hospital, when the doc comes in and gives me the bad news that he could not successfully perform the procedure, I immediately recall a poster somewhere that said, ” When life gives you lemons, make lemonade.” Well, here is a picture of me with some lemons. I really don’t care for lemonade at all, and, as a diabetic, it’s not good for me.

Tomorrow, I will show you something you can do with the lemons.

Stay tuned to tomorrow to see what else you can do with lemons.

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

The beauty of kayaking on Upsata Lake is the peace and quiet that surround you like massaging arms while you navigate the tranquil lake.
Photo by Dorock

“A lake is the landscape’s most beautiful and expressive feature. It is the Earth’s eye; looking into which the beholder measures the depth of his own nature.”

H.D. Thoreau, Walden

My friend, Brian, is a fisherman. He lives in Elyria, Ohio and likes to fish in remote lakes in Canada. Several months ago he and I were catching up and he began describing this wonderfully successful trip he and some friends had made to a distant, unknown little puddle in the nether reaches up north in one of the Canadian provinces. “Doo, every fish I caught was a personal record! All the guys on the trip thought this was the best fishin’ hole we ever found. All of us got our personal best. It was just amazing.”

Self-portrait on Upsata Lake
Photo by Dorock

He then told me the name of the lake, its location and how to get there. “Whoa, Brian, why are you doin’ this?” I asked. “Doncha know if you keep telling people about this place, the next time you go there, it will be just another pond, not the great pond you know it to be?”  You could see the brain cells working, “Hmm, I guess you’re right.” Of course, I’m not much of a fisherman, so Brian’s secret is safe with me, but I don’t know how many other guys he told about this place, so his special place may be a bit in jeopardy.

Also, I realize that what I am about to share with you could end with the same result.

Last year, when Patti and I visited her brother Jim, and our sister-in-law, Nina, in Missoula, Montana, they took us kayaking to Upsata Lake, about an hour east of their home in Missoula. That visit was truly a breathtaking experience. I wrote about this lake last year. At the time, we were there at dusk and after the sun set, we could hear the sounds of the flapping of wings from birds breezing by us. We couldn’t see the birds at all, but we could hear them and that was the magic.

“Nature spontaneously keeps us well. Do not resist her.”

So, this year, on our Western Swing, we went back to Upsata Lake. This time, there were 10 of us on the lake, instead of the five that went last year. We were in Missoula again to visit Jim and Nina and celebrate the high school graduation of our niece, Ciara.

This time on the lake, we were there in the middle of the day. After we loaded the kayaks with our party, everyone took off and explored the lake to their liking. Jim’s son, Matt, and his girlfriend, Holly, took off quickly toward the other end of the lake. Nothing competitive between these two. The rest of us stuck pretty much together, dodging scores of lily pads that floated either just on the surface to slightly below the surface.

Jim and Ciara
Photo by Dorock

After a few minutes, Jim and Ciara discovered some loons floating along at the other end of the lake. Jim’s other son, Tj, niece, Jordan, and sister-in-law, Lisa aimed for the other end of the lake as well. Nina and Patti floated along, soaking up the scenery and taking pictures.

“We are constantly invited to be who we are.”

If you will bear with me a moment, I have a bit of explaining to do. I feel I need to set a stage for you. I have a very blessed life. I have been fortunate enough to travel to some of the most beautiful places in the world. Sure, not as many as some have done, but I have hiked through the Alps; walked along the water’s edge of fjords in Norway, hiked through the Rocky Mountains and explored the Grand Canyon and Yellowstone. When I have had the opportunity to travel, I have enjoyed every moment of it. And, most of these places have their serenity, their peacefulness and, certainly, their grandeur.

They are all relaxing, restful, joyous, inspiring, breathtaking. They grab your senses.

But, Upsata Lake has grabbed my heart.

“I would rather sit on a pumpkin and have it all to myself, than be crowded on a velvet cushion.”
Photo by Dorock

When I am quietly in the kayak on Upsata Lake, keeping the paddle in the kayak and just floating quietly, I look up at the bounty of the cumulus clouds floating overhead. They aren’t just clouds to me: they are small children laughing with white towels clothespinned to their shirts like capes, running back and forth touching the flowing white sheets drying in the afternoon breeze of a never-ending clothesline.

The still, languid, slow-moving water and current of the lake reflects the beauty of these clouds, but ever so slowly as if the surface is a watch that is slowly losing its battery and I watch the second hand move slower and slower til it stops.

“A man is rich in proportion to the number of things which he can afford to let alone.”
Photo by Dorock

The lily pads rest atop the water like sunbathing models who say nary a word as they await the next mojito to be dispatched next to their lounge. Nearby, a dragonfly dips in a circle to the water. As it dips to lightly touch the water, it is either drinking or bathing, but I am hypnotized by the dragonfly’s circular motion.

Along the banks as I float by, the pines adorning the shore reach for the sky whispering quiet undetectable prayers to the God who put them there. They know it is a magical place and the only time they share this thankful and grateful feeling is when a breeze floats among their branches and they share their prayers with us mere mortals.

“If you have built castles in the air, your work need not be lost; that is where they should be. Now put the foundations under them.”

Sometimes the majesty of beauty can be in the simple, small things that surround us. On our Western Swing, I have marveled at the beauty of the West that rests just beyond the white stripes and asphalt that take us from one destination to another. When I look at a rock formation, I don’t wonder whether it’s igneous or granite or sandstone, I wonder at God’s strength and power to put something so simple, yet so beautiful there for us to see and know. And I know His power extends so far beyond what is visible from the white stripes and asphalt.

“To be awake is to be alive.”
Photo by Dorock

Yes, Upsata Lake has captured my heart, far beyond any other site I have ever seen. I hope each of you have your Upsata Lake. I thank my brother-in-law, Jim, for introducing me to a small piece of this earth that has become such a resident of my heart. And, Lord, thank you for putting it there!

“Why should we be in such desperate haste to succeed, and in such desperate enterprises? If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, how ever measured or far away.”

“I have a great deal of company in my house; especially in the morning, when nobody calls.”
Photo by Dorock

“To be awake is to be alive.”
Photo by Dorock

You only need sit still long enough in some attractive spot in the woods that all its inhabitants may exhibit themselves to you by turns.”
Photo by Dorock

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