I’d like to introduce you to a family member of mine. This is one of those melodramatic stories about a guy who did not know he had a brother or sister until later in life. I discovered only too recently that I had a twin brother, but, unfortunately, we were separated at birth. He went on to celebrate a very successful career in advertising — all this in clothes that were only the color white. Go figure!

Here’s the twin brother I never knew I had until recently…

photo

Folks, the link below is to an article in the NYTimes today about a cancer conference taking place in Chicago that is touting the importance of the immune system in fighting cancer and some breakthroughs that are happening. This appears to give strong credence to the statement that the immune system can play an important role in fighting cancer. This is what I have been doing for the last 32 months.

A LITTLE BACKGROUND: I was diagnosed with stage 4 pancreatic cancer on September 20, 2010 in Chicago. The very next day, at an appointment with a Chicago oncologist, the doctor told me that if I didn’t start his suggested cocktail of chemo drugs that day, I would be dead by Christmas. Well, it’s June 2013, and I am writing this, not some impersonator.

I got a second opinion from MDAnderson, a cancer center of excellence in Houston shortly thereafter. MDAnderson was not as adamant about the speed for starting the chemo as they were certain that neither surgery nor radiation would help me. Chemo would extend my life perhaps a couple of months or so.

Over the course of the next few weeks or so, Patti and I met with five oncologists. We were living in Dallas by then (having left Chicago behind to be closer to family). Every oncologist recommended chemo, but every one differed on what the chemo drugs should be used. Gemzar was somewhat universal.

My brother-in-law, Bill, suggested that I meet with a holistic practitioner to supplement whatever decision I made about pursuing chemo. Bill was fighting melanoma, using Julia, the holistic practitioner, to supplement his periodic visits to MDAnderson to monitor his fight. Julia said to me after a few initial visits: “If you are so committed to going the chemo route, can you at least give me three months to build up your immune system before you start the process of introducing chemo poisons to your system?” As a holistic provider, Julia was certainly no fan of chemo drugs.

Something about what she asked and the following conversations just made sense to me. I put off the chemo and began pursuing the building up of my immune system and following my faith. This involved quite a variety of vitamin and nutritional supplements, changing nutritional habits (swearing off red meat and carbonated beverages), experiencing a variety of light therapies designed to disrupt cancer cell duplication. Sometimes this meant 4-5 trips to visit Julia a week, some visits lasting from 30 minutes to a few hours. And, absolutely none of this was covered by any insurance.

But, Patti and I were fortunate to have enough to pay for these treatments. We are blessed.

THIS ARTICLE TODAY: At the conference in Chicago, various doctors and researchers are saying that it could be the immune system is more important than originally thought in fighting carcinogenic cell reproduction in the body. Of course, the article mentions that a few of the most powerful drug companies are working on clinical trials with a variety of immuno-related drugs that could replace chemo drugs. One researcher even went so far to mention that immune-related therapies could even replace chemo — certainly not without major pharmaceutical help.

When I read this article, I was near tears. When I was going through the immune build-up with Julia, it just seemed obscene that I could not get any of her treatments approved by insurance. Don’t get me wrong, I believe there is a role for the drug companies, but there are roles for a variety of different approaches. I am just ecstatic that these clinical trials, while self-promoting drug company solutions, may soon find a place nestled comfortably among cancer-ridding solutions. Thank you, Lord!

I am also including here some links to some other recent articles about this latest development,

If you read the NYTimes article below, be sure to read the comments about “cancer tails.” God bless you all and your families

Promising New Cancer Drugs Empower the Body’s Own Defense System

By ANDREW POLLACK

The drugs work by unleashing the immune system to attack cancer cells, much as it attacks bacteria or other foreign invaders in the human body

Related articles

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

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.

As long as I have lived or traveled in the South and Southwest, I have treasured some of the colloquialisms that I routinely hear here. Of course, you don’t need to live here to hear all these unique sayings. One of my favorites has been, “Ya know, he’s just a leetle bit slow.” which is usually followed with the person saying the phrase holding their forefinger and thumb together to emphasize the degree of slowness.

I’ve heard this expression countless times. It’s very Southern to use such polite language to indicate someone is stupid or can’t cut the mustard or doesn’t have the sense to come in out of the rain.

Yesterday, I heard this expression applied to me. And I was thoroughly happy to be “just a leetle bit slow.” I was in my oncologist’s office to hear results from the latest bloodwork and CT scan. The doctor mentioned that my CT19 cancer numbers had fallen and the movement of the tumors in the panaceas, liver and lung were stabilized, showing very little, if any movement at all. It was great news.

So, today or tomorrow, if I hear my wife say, “Cancer-boy is just a leetle slow today,” it’s because the tumors are not moving forward aggressively, and, in fact, are barely moving.

Thank you all for your prayers, Cancer-boy really appreciates them. God bless you all and your families.

 

Those of you who regularly read this blog, or at least read it whenever there is a new posting, Patti and I are not alone in fighting cancer. There are numerous success stories all around the globe. The following story is from a friend Cameron, about his caregiving efforts around his wife, Heather’s, fight with mesothelioma.  Read on:

Holding On to Hope as a Caregiver

On November 21, 2005, my wife, Heather, and I learned that she had a type of cancer called malignant pleural mesothelioma.  From that day, I started my new role as Heather’s caregiver.  Only three months before learning of my wife’s disease, we had become parents for the first time.  At the time of the diagnosis, we were looking forward to enjoying the holidays with our beloved daughter, Lily.  On that November day, however, our lives changed completely.

During the initial visit with the doctor, we learned as much as we could about my wife’s cancer.  The first two treatment options our doctor suggested, a university hospital and a regional hospital, didn’t offer a thorough program for my wife’s cancer.  The final option was a program run by an experienced mesothelioma specialist in Boston named Dr. David Sugarbaker.  During this conversation, my wife was silent.  She was shocked and terrified, and the look on her face screamed for help.  I knew that if we had any chance of beating this disease, Heather would need the best care possible.  I turned to the doctor and said, “Get us to Boston!”

After that initial meeting with our local doctor, our lives took a number of difficult turns.  Our daily routines no longer existed.  My wife had to leave her full-time job to focus on her health.  Although I continued to work at my job, I had to reduce my hours in order to be there for Heather and Lily.  I spent most of my time attending appointments and making travel arrangements.  When I wasn’t focused on Heather, I directed my energy completely to Lily.  At times, I felt total fear and anxiety as I pondered the future.  Although I broke down on occasion, I never let my wife see me when I was upset. I knew she needed me to be strong, and I wasn’t about to let her down.

Fortunately, we had numerous relatives and friends who were more than willing to help us.  Our loved ones gave us comforting advice and even offered much needed financial help.  With the knowledge that we had an entire army of supporters, I was able to keep going as the caregiver for my wife.  If you find yourself in a caregiver role, don’t be too proud to accept help of any kind.  I learned this the hard way, but after I did, a weight was lifted from my shoulders.  

Our lives didn’t return to normal for years, but our hard work and persistence paid off in the end.  After surgery, chemotherapy and radiation, my wife was able to defeat her disease.  From our experience, we learned how to appreciate every precious moment on this earth.  Two years after my wife’s mesothelioma diagnosis, I returned to school to pursue a degree in information technology.  My time as a caregiver taught me the strength and the courage to pursue this dream of mine, and the knowledge that I gained in stress and time management helped me to succeed at school.  After successfully completing my coursework, I graduated with honors, and the school invited me to speak at the graduation ceremony.  During my speech, I shared my story about standing by my wife through cancer, and all of the lessons that I learned as her caregiver.  I told my fellow graduates that within each of us is the strength to accomplish incredible things, if we only just believe in ourselves, never give up hope, and always keep fighting for the ones we love. 

 

imagesLast week, Patti and I were in Florida visiting her mom and dad. Her mom had an 85th birthday and more than 40 showed up at the Olive Garden to celebrate the big event. We were a surprise along with our sister-in-law, Lisa, who also attended.

It took several days for us to celebrate her birthday. While we were there, Virginia mentioned that the phone we set up for her wasn’t working. So we went to the nearest AT&T store to get it fixed. Off we went.

AT&T told us that her phone was not eligible for an upgrade, but mine was.

So, here’s what we did. I gave up my phone to Virginia so she could have a phone. AT&T fixed her right up.

Then I upgraded my phone to the new iPhone. Now, I have always felt that irony was a great element of true humor.

The funny part? Stage 4 cancer boy had to sign a 2-year contract to upgrade the phone. That really made me laugh!

__________

Recommendation: If you haven’t seen Silver Lining Playbook, do so. We just got back and I think it was the best movie of the year — it being February and all. Brad Cooper was just amazing!

 

The past two times that we’ve gone to visit family in Montana, we’ve been fortunate to go kayaking at Lake Upsawta, near Missoula. Both times, Jim and Nina introduced us to the lake and how much fun kayaking can be. At one point someone in the group heard a loon toward the other end of the lake. I’ve posted pictures of Lake Upsawta earlier.

Now that we’re in a completely different season, here is Lake Upsawta in the winter. As cold as it gets in Montana, I’m sure it would be easy to walk out on the water.

Since Jim and Nina first introduced the lake to us, I have come to love this place so much. It is serene, peaceful, quiet, beautiful and lovely at any time.

For your enjoyment, here is Lake Upsawta in the wintertime. Thank you, Nina, for the photo!

Winter settles in on Lake Upsawta in Montana

Winter settles in on Lake Upsawta in Montana

I do believe it is true that spending time with pets helps to relieve stress; and I do believe that stress can start or compound illness or injury. So, in the spirit of trying to relieve stress for whoever may read fightingdamien.com, here are some pictures to show you how some friends of ours in the animal kingdom relieve their stress. I hope you enjoy them …

photo