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A blog by lung cancer survivor Tom Galli

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Tom Galli

Breathe Deep

How does one find joy in lung cancer?  I find some of mine by celebrating survival, and there is no better way than to attend a LUNGevity sponsored Breathe Deep event.

Our's was a pleasant but breezy fall Texas day and about a hundred of us showed up to the celebratory walk-jog-run event.  Our pleasant jaunt around the Arlington Texas park also raised thousands of dollars to undertake LUNGevity focused research for new diagnostic and treatment methods for lung cancer.  But, while fund raising is vital, celebrating survival is even more important.  When we meet and walk together, we become a powerful symbol of hope.  We become energized.  We find a moment of joy.

Forum moderator Susan Cornett and I met each other for the first time at today's event.  We've been internet connected for nearly 2 years but our in person meeting was a wonderful experience.  We talked about vacations taken and planned, survivor memories, and shared life experiences.  I took this photo of Susan with her mom and dad who turned out to help Susan celebrate life after lung cancer.  We had a grand time.

Stay the course.

Tom

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Tom Galli

Summer has ended and baseball is in World Series mode.  I’m a long suffering Philadelphia Phillies fan — a Phanatic!  To have a lifelong fascination with a mediocre baseball club requires supreme dedication, unusual perseverance, and a strong conviction that tomorrow will be a far better day.  These attributes are prerequisites for facing a daunting lung cancer diagnosis and enduring the arduousness of treatment.

Danny Ozark, once manager of the Phillies, took the team from perennial cellar dwellers to contenders. He explained his formula for success thusly: “Half this game is ninety percent mental!” Dismissing the missing half, the same can be said of life after lung cancer treatment.

Presume diagnostic and treatment routines of lung cancer are largely similar; the unique and difficult challenges occur post treatment.  Adding Ozark’s missing half, coping with post treatment life challenge "is ninety percent mental.”  Individually, each will face a distinct challenge set but universally, life will be different than life before treatment. How so?

First was a misplaced expectation to return to pre-diagnostic life. After NED, there were so many things I could no longer do. It took a while to realize I needed to carve out a new lifestyle. There is a new normal life after lung cancer, but the mental challenge is finding it. No one gives you new normal; you have to make it.

Several side effects became chronic conditions. Coping becomes a mental challenge. Everyday, I play a round of mind over matter. Most days my mind wins but I have to live with losing days.  Too many in a row and I need help.  Fortunately, my wife is a godsend. Plan to have someone trusted close by.  

I’ve learned to go well out of my way to avoid confrontation. There are no “civil” discussion these days.  There is disagreement, branding, insult and anger.  My spin cycle goes one step farther to pain.  If I walk away, I may have a good day.  I won’t if I don’t. I’ve learned to control how I feel about something and not caring enough to have an opinion works well indeed.

My new normal life is both challenging and enjoyable.  Achieving that state involves application of Danny Ozark’s recipe for baseball success — new normal life “is ninety percent mental.”

Tom Galli

There are advantages to receiving lung cancer treatments in small clinical settings.  Among them is everyone knows your name and treatment circumstances.  Scheduled for a CT scan with contrast yesterday, when I checked in I was routed to the infusion area to have my IV device installed.  Chris, the radiology technician who’s been scanning me for almost 14 years, is well aware of the difficulty of installing an IV.  So he passes me to the infusion nurses who yesterday managed to capture a vein, first try!

But, the infusion area was packed and so I had my device installed in proximity to the treatment complete celebration bell.  In my day, the occasion was not a big celebratory photo op.  One would ring the bell softly because many were asleep during infusion.  Consequently, I never got a photo.  Yesterday’s photo will be added to my archives.  It is shared with you because it took three rings to find life. Lung cancer is persistent.  Treatment is often a marathon but one that can be won!

Stay the course.

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Tom Galli

I had an interesting chat with my general practitioner over the Fourth of July holiday.  He’s a gentleman rancher with an abundance of tomatoes so I brokered an invite to his beautiful ranch to relieve him of his abundance.

A social cup of coffee segued into a wide ranging conversation about medicine, ranching, politics, engineering and cancer treatment.  Doc has lots of opinions but they are founded on deep study and comparative analysis.  But, unlike most intelligent people, he rarely uses technospeak but rather explains complex topics in easily understood words and concepts. Thus fostering interesting conversation. The topic turned to patients seeking second opinions and physician egos.  His words are worth capturing: “I don’t mind a patient seeking a second opinion…I get paid.”

Doctors are important people in our society. Our adulation of their skills causes us to forget that in a pay for service system; customers have a right to express dissatisfaction and seek alternative practitioners.  If you don’t like the medical service you pay for, find someone who provides better service.

Stay the course.

Tom Galli

I'm writing this from a Florida Hospital radiation clinic waiting room. My daughter is having intensity modulated radiation therapy (IMRT) to treat her meningioma residual left over from surgery 3 months ago. This was her second brain surgery and in between was the birth of my granddaughter. Ironically, our greatest joy was sandwiched between our greatest fear. 

She'll have at least 30 fractional sessions. I'm here doing grandfather and father stuff, the former fun, the latter hard as nails. 

There are substantial risks. The tumor residual is lodged around her eye socket and the impact to her vision is of vast concern. We've talked about it. Mostly we try and forget. Daughter feeds back my mantra of only worrying about things that can be controlled but it doesn't ease my concern. Too much experience in this radiation domain to not worry. I find myself undone by uncertainty, again!

Yesterday's clinical visit experience was my first in a long time. Things haven't changed. Quiet people waiting for their time with "the beast", families talking in hushed tones, most have lost hair indicating combination therapy. One change: the radio oncologist came out to greet my daughter. He supervised the fitting of the facial fixture and stayed through the entire dose application. That was unique in my experience and immensely comforting. Maybe the cancer community is learning to treat people not patients. 

Passing on parental knowledge and experience is expected but not on this subject matter. We need to fry this tumor, but the potential vision side-effects are disconcerting. We've got one chance, twenty-nine radiation bullets left, and then scanziety and hope. Tumor is a word I need to discard from my vocabulary. 

We will stay the course.

Tom Galli

Start with any whole positive number. If it is even, divide it by 2; if odd, multiply by 3 and add 1. After a string of calculations applying the even-odd method, regardless of the starting number, the answer will always be 1.  Well maybe because all numbers have not yet been checked. But up to 10 raised to the fourteenth power have been. And that is a very big number! This mathematical oddity is called the Collatz Conjecture. 

For example, here is the calculation string applying the even-odd formula starting with 5: 16, 8, 4, 2, 1. (This is a great challenge for children BTW, especially if you require mental calculation.) Try a number. Don't try 33 or you will be up all night calculating till you reach 1, but you'll get there. 

Why is it called a conjecture? The word is defined as a hypothesis that has been formed by speculating, usually with little hard evidence. I'm sure Collatz tried thousands of calculations before publishing his conjecture unlike the lady who questioned me about the origins of my lung cancer. 

People are inquisitive. When I slip off my tee-shirt to enter the pool, people can't help but notice my "battle-scarred" chest. I've a distinctive banana-shaped scar along my back and missing ribs and a noticeable lack of a right pectoral muscle in addition to many suture scars front and back. I could easily claim a battle wound but tell the truth. When I did, my inquisitor said: "smoker right?" 

This is the Lung Cancer Conjecture -- pure speculation. In my case, it is likely true but think of the never smoker encountering the same conjecture, then suffering the disdainful scorn of disapproval normally reserved for a badly misbehaving child. 

It is of little value to take these people on. They have small minds that are already made up. It is however required we attack the attitude of deserving to die because we contracted a disease that settled opinion holds as self-inflicted. HIV/AIDS is largely self-induced and the ill are treated as heroes, reaping a bonus-budget of 10-percent of all NIH research dollars. This malicious Lung Cancer Conjecture must be contested if we hope to increase research funding from minuscule to meaningful. 

The number 1 is the likely answer to Collatz's Conjecture. One also signifies a single entity, a whole person, a human being who contracted lung cancer. Does the reason really matter?  

Stay the course. 

 

 

 

 

 

Tom Galli

I am writing this from the pool deck of a cruise ship while on a transatlantic sojourn. Our fourth transatlantic and our favorite form of vacation, we cross then pick several countries and explore. This year, after docking at Barcelona, we fly to Ireland and tour the wild and unpopulated western coast, then spend a long weekend in Edinburgh, and fly home. The cruise and the touring after is wonderful. The flight back is a nightmare because my incision scars throb in pain in a pressurized aircraft. We need to make the return flight in two legs (overnighting in Boston) to recover from the pain. 

The national hope summit concluded, and missed for the second time because of our annual spring migrations, I tell you about our cruise as two examples of hope.

First, we undergo treatment and endure discomfort for a reason -- extended life. It is important to shelve the treatment and uncertainty mantle to do something enjoyable with this life extension. We enjoy these long (and reasonably priced) repositioning journeys on a cruise ship.  We step out of the mundane and into the lap of luxury and enjoy interactions with the international assortment of passengers we sail with. 

Second, to the essence of hope, if I can survive to do this, so can you.  

I will never go back to my lifestyle before lung cancer. But, I can have an enjoyable and meaningful life after lung cancer. And, my attitude dictates the amount of joy and meaning experienced. It is so important to realize this point. We endure treatments for a reason. Find your reason. Revel in your new normal. 

Life indeed is what you make it. Make yours. 

Stay the course. 

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Tom Galli

I like thinking about choice.  It is an interesting concept and can involve logical, rational thinking and irrational and illogical thought — sometimes concurrently.  Choice is not just a human phenomena.  Animals make choices, some deliberate and some random. But when all is said and done, a choice is a decision that has an outcome (or consequence).  When we make rational choices, we are said to be informed of the consequences. Irrational choices are those where consequences don’t matter.

To digress for just a moment, consider the age-old saying involving cake.  It is generally cast as a statement of choice that resolves to a consequence: if you eat your cake, you can’t have it. Think about the statement for a moment.  If I truly want to possess a cake, I can’t eat it.  Both are desirable: having a cake is nice, eating it is better.  But, the consequence of eating involves the loss of cake and, for example, a further consequence if one planned to use the cake to celebrate a child’s birthday. Most would characterize eating this presentation cake as irrational. Disappointment is the consequence and it is known and understood before making the choice to eat.  

Let’s extend our thought experiment to a choice between lung cancer treatment and continued smoking. Surgery, radiation and chemotherapy all irritate the lung, and presume the smoker realizes that tobacco smoke (indeed any smoke) is also a lung irritant.  Choosing smoking under these circumstances is irrational. The known consequences range from healing problems, surgical failure, and premature reoccurrence. Yet these don’t seem matter. The impact of consequences will also disappoint the treatment team and family who are praying and hoping for success.

There are many choices in lung cancer, all with consequences.  Not choosing treatment because disease is at an advanced stage is rational. Implicit is the forbearance of side effects with little prospect of success but yielding a higher quality of end-time life.  But when one chooses treatment, one is choosing life extension.  Choosing also to continue smoking while undergoing treatment is not rational and puts at risk the opportunity for extended life.  Let’s make rational behavior choices and avoid undesirable and disappointing consequences.  Chose either to have your cake or eat it.

Stay the course.

Tom Galli

Perhaps you’ve heard?  The federal government is a large insurance business with a standing army.  Social Security is insurance — a specific kind of insurance called an annuity.  The insured and employer pay premiums every month to fund a defined benefit at a specified year (normally your federally mandated retirement year).  Everything is peachy-keen till a disability affects work because one has late stage lung cancer.  And, when a lung cancer survivor files for disability, allowed by law and regulation, the federal government almost always disapproves.  So, here are some suggestions for obtaining disability benefits by disapproval.

1. Expect to be Disapproved. I know a lot of folks with lung cancer.  Among this population, only one was approved on initial application.  He passed before he received his first benefit check.  My company provided disability insurance carrier filed my first application.  I had an unresolved bronchopleural fistula after a pneumonectomy that required a second and third surgery and indications of tumors metastasized to my remaining lung.  My claim, filed by a former Social Security claims adjuster, was disapproved.

2. Involve Your Doctors.  The disability application requires you to disclose all your physicians and medical providers.  Then, the administration asks for medical records, reports and observations. Doctors are busy folks; oncologists are bombarded by SSA requests for information, and for good reason.  Late-stage lung cancer (including treatment and side-effects) is often disabling.  Inform your medical providers of your application and ask them to help by responding to the request for information.

3. Complete the Application. The Social Security Administration is a bureaucracy.  Bureaucracies love to find “nits” in applications and return with some very vague description of the problem. This delays a decision and delays payment, and these are typical insurance company behaviors. Read every word of the disability application process (it is all online at www.ssa.gov) and check your application closely to ensure it is complete and error free.  Have several family members check it also after reading the application instructions. Ensure you completely describe your symptoms including those caused by side-effects.  Also, completely describe how these symptoms affect your ability to stand, sit, walk, bend over, think, concentrate, and etc. (Hint - read the criteria that will be used to determine your disability finding and use those words as descriptors).

4. Understand the Fine Print. There is payment delay: six full months after the date of disability (date shown on claim approval letter). Depending on other income sources, payments may be taxable. You are not found to be permanently disabled.  Regulations allow a review of your status after start of disability payments. It is not a good idea to join an adult softball team while receiving disability payments! You are not eligible for Medicare until 24 months after receipt of first disability payment. Your disability payment will be less than your full retirement benefit, and when you reach retirement age, your retirement benefit will not be increased. 

5. Lawyering Up. Filing the initial disability application online is a good idea, as long as it is properly completed and supported by doctor reports and observations.  But when denied, it is time to level the playing field and retain a lawyer. Not any lawyer, but a law practice that specializes in Social Security Disability appeals.  By law, they cannot charge you for their services.  They collect fees directly from the Administration if an administrative law judge approves your appeal.  And, most important, they know what they are doing and it is in their financial interest to do a good job on your appeal!

The disability process is deliberate, lengthy and frustrating. Like lung cancer, success involves persistence. Insurance companies don’t relish paying claims and every approved disability claim turns a premium into a disbursement.  But, Social Security is insurance with disability payment provisions that you pay for!  If you can’t work, apply, appeal and persist!  

Stay the course.

Tom Galli

I am a capitalist!  I firmly believe profit is a reward for good performance and indeed it is an expected reward.  Nothing is more important in business than making a profit.  Nothing!  My purpose for writing this is to acquaint you with a new type of business on the lung cancer scene — a for profit advocacy company.  That’s right, companies have been formed to advocate for and sustain those in lung cancer treatment and expect to earn a profit -- off us!  Let that sink in for a moment.

Why a for profit seeking venture for lung cancer? Our disease kills three times more than any other type of cancer.  Research into breast cancer is making the “pink ribbon” disease a declining market.  And, perhaps lung cancer is finally getting a research break with the emergence of targeted therapy and advances in immunotherapy for types of non-small cell lung cancer.  Investment capital necessary to start the profit engine sees a growth opportunity -- from us!

Let’s get down to business by creating 2 companies: call them Non Profit and For Profit.   Both have a revenue projection of $1,000.  Non Profit gets revenue from donations; For Profit from sales.  For Profit has a 20-percent profit expectation.  Non Profit has none.  Non Profit can spend all of its revenue — $1,000 — advocating for us.  For Profit can only spend $800.  Twenty percent of its revenue must be profit.  From the eye of the lung cancer patient and survivor, which company is more efficient and effective.  If dollars spent advocating and supporting are the measure, clearly Non Profit.

That is the business case, but there is a more important case at hand.  For profit companies are establishing a business that makes money from our malady, our pain, our side-effects, our recurrences, our suffering.  They are not selling drugs or providing treatment, they are advocating, for profit -- on us!  You might want do a little checking before establishing a relationship with a new guy on the block.  Rest assured, LUNGevity remains a Non Profit. Private message me for details.  Be careful out there!

Stay the course.

Tom Galli

In the days before computers, college registration involved waiting in long lines.  Freshmen were last to register and my hope was an elective in social science, fine arts or music.  But when I reached the registration table, I was assigned the only open class, Theology 101—The History of Religion.  I was less than excited.  And, worse yet, it was a Monday-Wednesday-Friday 8:00 a.m. class.

The professor was a Marianist brother, with PhDs in Ancient Languages and Cultural Anthropology, and five minutes into my first class, I realized he was a captivating lecturer. Possessing a gift for making the mundane interesting, he introduced each lecture with a compelling story. I was so fascinated by the depth and breath of the professor’s knowledge, I studied with him every semester earning me an unplanned a minor in Theology. I am not a theologian nor am I intensely religious. But Theology taught me a great deal about faith, hope and life.  Lung cancer interrupted my collegiate learning.

Faith is more than a religious virtue; it is a distinctive human trait. Hope comes from faith. Thomas Aquinas, the noted 13th century Christian philosopher, explained the relationship with these words: “faith has to do with things that are not seen and hope with things that are not at hand.”  Faith and hope are essential virtues for lung cancer survivors.  We don’t see evidence of treatment at work, yet faith causes our belief they are, and we are ever hopeful of achieving extended life. Hope then is our bastion against things we cannot control like life threatening lung cancer.  

Life has a beginning and an end. Both are uncertain and often beyond influence.  In between comes living, and we have some control over the nature and quality of life.  While in active treatment, I forgot my ability for self-determination resulting in 3 years of wasted life.  Almost everyday, someone comes to this forum expressing fear, uncertainty, and despondency. I well understand why, but I also know that a lung cancer is not the end of life; it is part of life.  In that vein, I recall a quotation by Saint Rose of Viterbo framed in my professor’s classroom. “Live so as not to fear death. For those who live well in the world, death is not frightening…”  Have faith, hope and live well.

Stay the course.

Tom Galli

The lights dim, the announcer’s introduction complete, now all the stand-up comedian needs to do is be funny. We’ve all seen one bomb.  Even the best have a bad night.  Overcoming fear must be a prerequisite for a comedian. Comedian and author Jerry Gillies developed an excellent approach for handling fear: “Confront your fears, list them, get to know them, and only then will you be able to put them aside and move ahead.”

This is very relevant advice for a lung cancer survivor.  I practiced a broader form of writing down fears by producing a journal of treatment experiences.  I still re-read that journal to keep connected to my treatment.  While I read the entire entry, I concentrate on what I was afraid of. So in a broader sense, I practiced Jerry Gillies' sage advice and benefited from it.

The power of writing down fearful things is important because my fear quickly morphed into a monster by spawning a multitude activities that I may or may not have been frightened by. For example, chemotherapy infusions were frightful events — at least that is the way my journals in early treatment read.  But was the entire infusion process frightening?

What I was afraid of was installing the IV, not the stick, but the wiggle to find the right place to situate the device.  An irrational fear because wiggling generates a mild discomfort but in my mind, wiggling is enduring torture. I have this mental picture of being strapped to a chair for interrogation while nurse-after-nurse “sticks and wiggles” on every extremity.  Just last week during a blood draw, the head phlebotomist had to pin me to the chair because I was “going down” during the procedure. A quick application of smelling salts saved the day!

Following Gillies’ advice, I would write down “wiggle” on my list of fears.  Getting to know my fear of wiggling produced some ways to put it aside and move ahead.  My first way was Xanax.  One mg of Xanax about 30 minutes before a procedure and IV installs are a piece of cake.  Another way is to tell the nurse ahead of the procedure that I have a phobia and not to wiggle; pull it out and try another vein.  

Another journal reveal is fear of pain caused by lung cancer progression.  Reading disclosed metastasizing tumors invading my spinal chord causing excruciating pain.  My oncologist dismissed this by explaining palliative radiation and hospice care. Thus, I was able to put this fear aside and continue on.

A lung cancer diagnosis is the most frightening event in my life, treatment is a close second, and recurrence follows.  Lung cancer trumps everything else I deal with. But, I learned to face this fear.  Writing about fear helps me understand it and deal with it.  Jerry Gillies’ approach works.

Stay the course.

Tom Galli

We often hear smoking gun used to describe the “ah ha” moment of a who done it.  I was unsure of the meaning and asked Siri.  My Apple genius defined it as “as piece of incontrovertible incriminating evidence.” 

I know two things with high confidence: (i) there is a very strong correlation between smoking and lung cancer, and (ii) implying smoking as a cause adds to the self-induced stigma that smacks down research for my disease. So, how do we address the stigma without pointing the smoking gun?

I couldn’t stop because I was addicted to nicotine.  When I was young and fearless, almost everyone smoked and I joined the crowd.  In my 30’s, most quit.  I tried, many times and ways, but couldn’t.  My addiction was stronger than will power.  Addiction is irrational.  Most addicts recognize the harm, but recognition caves in the face of physical craving. 

How is addiction to nicotine different from alcohol, heroin, or cocaine? It isn’t but what do the health authorities call it?  The Center for Disease Control (CDC) says smoking caused 480,000 deaths last year in the United States. Note absence of the word addiction.  The CDC also says about 88,000 people die annually from alcohol abuse.  Note abuse is not addiction.  Almost 35,000 people died from heroin overdose in 2015, according to the National Institute of Health.  Note again, overdose is not addiction. It is unreasonable to suggest these deaths resulted from one time or occasional use.  

I contend not using addiction to characterize the root cause is part of the problem.  If I smoke, abuse or overdose, I am branded guilty of doing something wrong.  I am causing the problem.  There is no disease or medical abnormality; therefore, there is nothing to research.  This individual guilt becomes a collective stigma.  If our national health authority doesn’t treat use as addictive, it certainly won’t be prone to find new treatments. Nor, will there be interest in treating consequences.  Thus, the paltry research funding for lung cancer.

Many people experiment with addictive drugs and are fortunate to stop short of addiction.  But, when one can’t stop, one is addicted and mechanisms must be found to treat the addiction. So, let’s change the nomenclature.  I am addicted to nicotine and my addiction likely caused lung cancer.  Where is the smoking gun pointed now?

Stay the course.

Tom Galli

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Today we celebrate 13 years of surviving NSCLC.  I'm borrowing three toes from Martha, my wife and caregiver extraordinaire, who deserves most of the credit for my continued life.  Martha did the heavy lifting during treatment, asking the right questions at the right time, and prodding my medical team with just the right touch.  By comparison, I was at wit's end during my nearly 4 years of continuous treatment.  Doctors McK (GP), H (Oncologist) and C (Thoracic Surgeon) also deserve a lion's share of credit.  Collectively, they share a trait that distinguishes them from the rest of medical community -- they treat people, not patients.

The red toenail painting tradition was started by a Dr. Phillip Berman, radiologist and never smoker, who was diagnosed with Stage IV NSCLC.  In an early Internet cancer website he founded, RedToeNail.org, he vowed to paint a toenail red for each year he survived what he called "this nastiness."  He painted 5 before passing but taught me a great deal about living with lung cancer.  During treatment, he was playing with his children, exercising, interacting with friends, and finding something to enjoy every day.  In other words, he embraced the life he had and lived every day reveling in the joy he discovered. His lesson -- those who choose treatment choose life and the important thing is to do something with the life you have.  I pass his powerfully evocative message to you.  If you suffer with lung cancer then resolve to live every day and find something to enjoy.  Realize that if I can live, so can you.  Paint your toenails red!

Stay the course.

Tom 

Tom Galli

Christmas Reflections

I've seen the star of Bethlehem, very early on Christmas morning.  While peacekeeping in Egypt's Sinai Desert, I would run before daybreak as soldiers are prone to do. Although the desert is quite cold in December, dawn running was a habit hard to break.  I ran the camp perimeter to check the defensive positions and greet soldiers enjoying the banter in three different languages.  Starting in the south perimeter and running counterclockwise, the predawn western sky was dark except for the stars that were so clear, they were painted on the black night sky. Passing along the northern perimeter, the sky lightened and my expectation was the sun starting its rise.  But, no, not that day. Right on the distant horizon was a cosmic anomaly, a false dawn, but a bright shining nevertheless.  I was looking at the star in the east seen by the Three Wise Men as they rode in search of Jesus. I would later learn, it was not a star but a rare conjunction of the planets -- Jupiter, Saturn and Mars -- all rising in the east slightly before being washed out by the rising sun.  I am awestruck by that memory.

Many years later after surviving a years worth of cancer surgery and while waiting the results of my first post-surgical diagnostic scan, my entire family gathered to celebrate Christmas. Mom, dad, four brothers, daughter, and a posse of nieces who overwhelmed my one nephew comprised the gathering.  Despite my manifest uncertainty, we had a joyous time.  I can count on a single hand the times my family gathered.  With two Galli soldiers, someone was always missing on deployment.  But Christmas in 2004 was an assembly formation, and the clan was all present and accounted for.  We celebrated Christmas and my life.  I am awestruck by that memory.

Then started the clammer lung cancer treatment. In my treatment years after the Christmas 2004 assembly, my life hovered in sadness and despair. I allowed myself to become overwhelmed by uncertainty, indeed I could think of little else. I forget there are only two things certain in the human experience: birth and death.  Everything else is uncertain; outcomes are unpredictable. Treatment was working for I was granted extra life.  There were many opportunities for joy but they were frittered away.  I am awestruck by those memories.

In common with all lung cancer survivors, having been born, I have only one certain human experience yet to deal with -- death.  Its timing is uncertain with or without lung cancer. In my memories of active treatment, I chose to let life pass me by forever losing opportunities for joy.

Today we celebrate a birth, a new beginning.  It was announced by a star. I've seen the star.  Let the joy of this birth be a new beginning for all lung cancer survivors.  Let us live and find joy in the life we have and be awestruck by the memories of life well lived.

Stay the course. 

Tom Galli

KODACHROME

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“When I think back” on Kodak Radiographic x-ray film, exposed film was sent out for development.  Then machines were invented to develop film at the clinic.  Today the film is gone.  With a nod to Paul Simon, mama took my Kodachrome away.  But, we still have radiation. There is a lot of press about the harm of low dose CT scans with some asserting a risk of radiation induced cancer from yearly scans.  Let’s take a closer look at radiation with the aim of achieving an unbiased understanding.

Meet the sievert (Sv) and his much smaller cousin the millisievert (mSv).  First, understand that 1 Sv is a thousand times larger than 1 mSv.  A sievert (and millisievert) is a derived unit of ionizing radiation dose (warning ambiguous scientific definition).  That means it is a calculated approximation of the health effect of ionizing radiation on the human body.  Why is it an approximation?  Because of uncertainty in type, strength and duration of radiation, differences from human to human, and perhaps most important, the lack of actual test data on deliberate radiation exposure to humans.  So, let’s call it a very good guess of the harm that radiation does to a person.

First explore very harmful radiation—say sieverts received during a thermonuclear explosion.  How much is a lot, what’s the harm, and how lethal is it?  The table answers the question.

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It goes without saying that exposures greater than 30 Sv yield toast, literally and figuratively! Notice the lethality uncertainty. That results from the derived nature of the sievert.  But, 1 Sv is radiation to be avoided.  Who wants a 5-percent probability of dying?  Moreover, literature cites a 5.5-percent chance of developing cancer from exposure to a 1 Sv dose.

Now lets compare and contrast the millisieverts (remember, 1,000 times smaller) received from common ionizing radiation for medical purposes.  The table has the details.

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Pay close attention to the third column of the table.  Single doses of ionizing radiation for all these medical procedures are very small.  Think of it this way, you’d need to have 1,000 x-rays, all at once, to approach the 1 Sv level of concern.  Notice also how small the low dose CT rate is compared to the normal chest CT. The low dose CT screening guideline recommends the test for those 55 to 80 with a 30-pack year smoking history, and current smokers or those quit within the past 15 years. Given these criteria and assuming one receives a low dose CT every year starting at 55 and living to be 100, the total Sv received would amount to 0.07.  Yes there is radiation, but the possibility of it causing radiation induced cancer is very-very-very small.  Late-stage diagnosed lung cancer presents a much higher life-threatening risk.

The US Nuclear Regulatory Commission is on record stating “public health data do not absolutely establish the occurrence of cancer following exposure to low doses and dose rates below about 100 mSV.”  Applying this level of safety threshold: “Mama don’t take my Kodachrome" (and low dose CT scans) away. 

Stay the course.

Tom Galli

Thanksgiving

Charlett and me.jpg

Today, in the United States, we celebrate the holiday of Thanksgiving.  Our first president, George Washington, called for an official “day of public thanksgiving and prayer” in 1789 and although the Congress heartily agreed, the proclamation was lost in the bureaucratic press of politics.  It fell to Abraham Lincoln to rekindle the Thanksgiving Holiday shortly after the pivotal battle of our Civil War—Gettysburg in 1863.  Thus in the mist of warfare and uncertainty, a holiday dedicated to thankfulness was founded.  

Today, we gather to celebrate life and thank the Almighty for health and bounty.  Thankfulness for me, a lung cancer survivor, is particularly significant for I have been blessed to witness one of life’s most memorable events: birth of a first grandchild.

During my recent visit, while cradling her in my arms, I felt a connection with my infant-offspring.  As the picture captures, Charlett Emilyrose was looking intently into my eyes, unusual for a three-week old baby.  She held my gaze for the longest time as if painting a mental portrait.  Her grandfather was joyous and delighted and thankful. 

This touching moment is unfortunately rare for those with lung cancer.  By statistical expression, Thanksgiving 2005 should have been my last celebration.  Yet, nearing my 13th year of surviving a lung cancer diagnosis, I am so thankful to have witnessed the birth of a grandchild. Providence has indeed showered me with gifts.

So today I give thanks for survival and in the spirit of George Washington’s original scope of holiday, I pray all who suffer the effects of this horrid disease experience the joy and delight I felt as I held my granddaughter in my arms.  Happy Thanksgiving all.

Stay the course.

Tom Galli

Predicting Doom

I am not a statistics wizard; an engineer, I value the predictive power of statistics.  Indeed, if one can precisely control variables, a statistics-based prediction of the future is remarkably accurate.  The joy of predicting end strength for a new carbon-nanotube concrete mix design melts the heart of this engineer.  But, concrete is a thing with but 4 variables to control.  Human beings have perhaps millions of variables, thus predictions about people are vastly more complicated and inaccurate.

Statistically-based predictive power has a foreboding downside.  The methodology is used by the medical profession to forecast life after diagnosis with late-stage lung cancer.  Unfortunately, I have first-hand experience once predicted with but 6 months of remaining life nearly 13 years ago!  My doom was forecasted with high statistical confidence and for a while, I believed it.

In the dwell time between treatments, I searched for methods used to generate my projection of demise.  Each patient’s type, stage, age, ethnicity, race, and date of diagnosis are reported to the National Cancer Institute on diagnosis.  Deaths are also reported but not the cause of death.  Nothing is captured on complicating health problems like cardio-pulmonary disease, diabetes, or other life-threatening maladies.  The predictive data set appeared slim and uncontrolled. 

My doom and resulting gloom waned while mindlessly searching web pages for statistical good news.  Ammunition in the form of a powerful essay by the noted Harvard biologist Stephen Jay Gould – “The Median Isn’t The Message” – contained: “…leads us to view statistical measures of central tendency [median or mean] wrongly, indeed opposite to the appropriate interpretation in our actual world of variation, shadings, and continua.”

This meant the statistician seeks to combine data and express it as a median or mean to predict or explain. I’d forgotten that I was one inaccurate variable in a “world of variation.” One data point used to calculate a central tendency of survival for about 1.4 million Americans diagnosed in 2004.  I might be the one holding the right-shifted curve from intersection with the axis of doom. 

Gould survived 20-years beyond his late-stage, nearly always fatal, abdominal mesothelioma cancer diagnosis.  Ironically, he passed after contracting another form of unrelated cancer.  A distinguished scientist, Gould eloquently described the limits of science and statistics by suggesting that “a sanguine personality” might be the best prescription for success against cancer.  There is always hope, with high confidence. Listen to his essay here.

Stay the course.

____________

Get your copy of Scanziety here https://www.amazon.com/Scanziety-Retrospection-Lung-Cancer-Survivor-ebook/dp/B01JMTX0LU 

Tom Galli

Irradiated

Amazon Kindel Royalties Donated to LUNGevity During November: "I didn’t feel any different after the first week of treatment. The second week was concluded with my first in-treatment consultation with my radiation oncologist.  Again, I reported no side effects, and the consultation was a brief, five-minute affair.  About midway into the third week, the sky fell!  I noted a redness of the skin on my chest, not unlike sunburn.  It was tender enough to hurt, but the pain was controllable with Solarcaine spray.  Additionally, I developed dryness of the lower throat and a persistent, nonproductive cough for which I started using over-the-counter, lemon flavored cough drops. But the real difficulty was my waning energy level.  After each treatment, I found it harder and harder to do normal things like walking, standing up, and staying awake.  Although I was very tired and needed rest, nearly continuous coughing interrupted my sleep. Chloraseptic throat spray supplemented my use of cough drops.  Complaining to the technicians yielded an early appointment at the end of the third week.

On that visit, the doctor examined my treatment record, looked at my skin burns, and noted my sore throat.  She prescribed a pain relieving salve for burns and a strange cocktail of cough medicines for sore throat and coughing.  The potion was obviously narcotic because I slept deeply after each dose.  I don’t know how I made it through the last week of treatment, as I became exhausted on the short walk from the car to the treatment room.  Fortunately, my workplace had a generous short-term disability benefit, and I took advantage of it.  I felt guilty for doing so during the first couple of weeks of treatment, but it was absolutely necessary during the last because I was bed bound except for trips to the cold, round room."

Stay the course.

 

Get your copy of Scanziety here https://www.amazon.com/Scanziety-Retrospection-Lung-Cancer-Survivor-ebook/dp/B01JMTX0LU   

Tom Galli

A Cold, Round Room

Amazon Kindle Royalties Donated to LUNGevity.org During November: "I was to receive two doses of radiation, one several seconds longer than the other.  Between doses, the equipment would reposition and emit beams from a different orientation.  I was told not to move and to hold my breath during each dose.  The instructions about breathing were: “Take a deep breath, let it out; breathe deeply and hold your breath; then breathe normally.” I could communicate with the technicians during the setup by way of a speaker and a microphone in the room, but both technicians were stationed safely behind the curtained wall when radiation was administered.  I assumed they were watching me on closed circuit TV.

After I received the instructions, treatment was begun.  I heard a soft buzz and counted about twelve seconds while holding my breath.  Then, while breathing normally, I watched the robotic apparatus reposition, felt the table move, and counted about eight seconds as the procedure was repeated.  The entire treatment cycle, from entering the radiation chamber to exiting, lasted about five minutes.  As I left the room this first time, I watched the technician remove my shield from the device and place it on an array of wall-mounted shelves that filled more than half the area.  The thought crossed my mind that each shield must be for a different patient under active treatment; if that were so, there were a lot of patients."

Stay the course. 

 

Get your copy of Scanziety here https://www.amazon.com/Scanziety-Retrospection-Lung-Cancer-Survivor-ebook/dp/B01JMTX0LU  

Tom Galli

Aggressive Treatment

Amazon Kindle Royalties Donated to LUNGevity.org During November: "A couple of days later, in a hastily arranged consultation with my oncologist, he revealed an approach to shrink the tumor that might allow enough margin for the surgeon to remove it.  He pointed out two risks for this aggressive treatment which used daily conventional radiation and weekly chemotherapy. The risk of radiation was an adverse effect on healing after surgery, particularly healing of sutured tissue.  Then there was the possibility that this treatment would not provide enough room to resect the tumor.  Martha asked most of the questions.  My only question, as I recall, was, “When do we start?”

The wait was short. I was to begin aggressive treatment immediately that April, employing daily radiation to the specific area of my right chest that encompassed the tumor, and a midweek infusion of chemotherapy drugs Taxol and Carboplatin.  This protocol would continue for a period of six weeks and conclude with a diagnostic scan that, hopefully, would show a reduction in size of the large tumor residing in the mainstem bronchus of my right lung."

Stay the Course.

 

Get your copy of Scanziety here https://www.amazon.com/Scanziety-Retrospection-Lung-Cancer-Survivor-ebook/dp/B01JMTX0LU 

Tom Galli

A Good Doctor

Amazon Kindle Royalties Donated to LUNGevity.org During November: "We filled our weekend reading everything we could find on the web about lung cancer treatment without surgery.  Survival statistics for my condition, given the size and location of the tumor, without surgery, were bleak.  With surgery, they were not much better; but small percentages of improved survival to a lung cancer patient are like gold nuggets. However, even after our diligent research, we didn’t have enough understanding to choose. Our plan was to have Doc review and explain the study literature and advise whether we should pursue conventional nonsurgical treatment or opt for the chemotherapy only, oxygen-enriched study method advocated by the research doctor. Thankfully, we were Doc’s first patients of the day.

He gave us his Texas smile greeting, listened patiently while Martha explained the surgeon's reason to not operate, and asked several questions about the test data used to make his determination.  I handed him the study literature, and he told me he didn’t need to see that. Doc excused himself, and we both could tell he was disturbed.  We were in the exam room across the hall from his office, and although the door was closed, Doc’s voice carried into our area.  He placed a call to my oncologist, and his tone sounded like that of a sergeant major chewing out a private.  To say he was upset would be a vast understatement.

We didn’t hear every word but recognized “young,” “in otherwise good health,” and “figure out a way to shrink the tumor.” Doc returned after his conversation and told us we’d hear from my oncologist's office shortly.  When we got home, the oncology practice nurse left a direct number and asked us to call right away!

As a cancer survivor, I am often asked how to find a good oncologist.  My standard answer is, “Have a good general practitioner and ask him for a referral.” Doc was well known in the Dallas area and had a reputation as an excellent physician.  He could have given his opinion about which nonsurgical method was best; but he’d seen a lot of cancer patients and knew surgery was the favored and most successful treatment method when tumors were en situ. Most importantly, he believed it was his duty as a general practitioner to weigh in and advocate for his patients.  Your trusted general practitioner is your best helmsman when navigating the sea of complex medicine."

Stay the course.

Get your copy of Scanziety here https://www.amazon.com/Scanziety-Retrospection-Lung-Cancer-Survivor-ebook/dp/B01JMTX0LU 

Tom Galli

Results Revealed

Amazon Kindle Royalties Donated to LUNGevity.org During November: "It was a bright and warm, early April Friday when we arrived at the surgeon's office for biopsy results.  The diagnosis was non-small cell squamous carcinoma.  Squamous cells line the inside of airways in the lungs, and the diagnosis fit with the tumor’s location in my mainstem bronchus and the strong correlation between smoking and squamous cell cancer. Squamous tumors are said to be slow growing; but given nondiscovery in my January x-ray, that description didn’t seem to hold true for me.  I’d read about squamous cell and recalled about a 35%, five-year survival rate if the cancer is localized and surgically removed in its early stages.  Mine was localized, but I was about to get bad news about surgery.

The surgeon felt the tumor was too close to the trachea to be safely removed.  Size and swelling of the surrounding tissues were further concerns, he said.  Given the tumor’s size and location, he believed it had to have spread to the lymph nodes; but every node removed was clear.  Still, he felt he could not perform the surgery.  I was squashed by the weight of the bad news.  Everything I had read pointed to surgery as the means to have a decent chance of surviving the disease.  Now, that was not an option." 

Stay the course.

 

Get your copy of Scanziety here https://www.amazon.com/Scanziety-Retrospection-Lung-Cancer-Survivor-ebook/dp/B01JMTX0LU

Tom Galli

Into The Thorax

Amazon Kindle Royalties Donated to LUNGevity.org During November:"My thoracic surgeon began to formulate his surgical plan in real time. He wanted to ensure no lymph nodes were affected by disease by performing procedure called a cervical mediastinoscopy, in which a lighted scope is inserted into the chest area between the lungs. He'd make a small incision at the base of my throat and remove tissue samples from the lymph nodes in the vicinity of the tumor for biopsy. By moving the scope around, he'd also be able to see the relationship of the tumor to the surrounding anatomy. When I asked how he'd assess the lymph nodes, the surgeon said he'd just snip them off, and the pathologist wold examine them during surgery; not to worry, I had plenty. If the lymph nodes were clear of cancer, he might be able to operate but was very concerned about having sutures near flimsy tissue of the trachea, which itself could not be sutured.

Day surgery starts at o-dark-hundred, especially in February.  I had done surgical prep the day before, so all Martha and I had to do that morning was arrive at the appointed time.  I was quickly checked in, then changed into surgical garb and put my things in a nice, hospital-issued bag.  Although a crowd of patients was waiting, everything operated like a well-oiled machine.  The head day surgery nurse interviewed me to check for drug allergies and ensure I’d had nothing to eat.  Then Martha joined me and we met the anesthesiologist.  He gave me a little something to relax me, and told us biopsies of this type typically last about 45 minutes.  That squared with the time frame given us and, true to his plan, the surgeon arrived just as I was starting to feel the effects of the medication.  He was upbeat and encouraging, telling me not to worry—this would be a piece of cake.  Martha and I shared a prayer before I was wheeled into the operating suite.  I remember classical music playing, being transferred to the table, and someone saying, “Count to ten.”  I have no idea how far I got with the counting.

The surgery lasted much longer than the usual 45 minutes: about four hours.  I was in the recovery room when the surgeon briefed Martha.  He’d removed lymph node after lymph node, sent them to the pathologist, and biopsied the tumor several times.  All nodes were clear of cancer.  I’d lost a lot of blood during surgery and had several pints administered.  When I regained consciousness, I was cold and thirsty.  The nurse wanted me to urinate before moving me to the discharge area, so I drank a lot of little containers of cranberry juice to expedite the process.  Finally, I could empty my bladder and was moved to day surgery discharge.  The surgeon's physician assistant met us there and conveyed information regarding our appointment for a post biopsy consultation."

Stay the course.

Get your copy of Scanziety here https://www.amazon.com/Scanziety-Retrospection-Lung-Cancer-Survivor-ebook/dp/B01JMTX0LU 

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