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Tom Galli

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Blog Comments posted by Tom Galli

    Sue BB

    Posted

    Sue BB,

    Well said and well written! Your Mandan News editorial expertise is showing.

    In my struggle for life with this disease, I realized writing about my experience was a tonic. I kept a near-daily journal chronicling thoughts throughout my 3-year journey of failed treatment and mayhem.  I did this because, as a trained engineer, I was schooled to keep a detailed "design" notebook recording lessons learned. Engineers use this tool to look back at design problems encountered and solution sets explored. Our memories fail often, and what presents as a new problem is often a problem previously solved or an unimportant one. But my treatment journal revealed a brand new advantage: the ability to realize progress in a sea of uncertainty. 

    Keep writing and stay the course!

    Tom

     

    LilyMir

    Posted

    Lily,

    Well said!

    The admixture of scientific knowledge, belief systems, and profit is not well settled. I cringe every time I hear someone cry: "follow the science." These words translate to "do what I tell you to do because I know absolute truth!" Well, let's review absolute truth as it applies to human life because there are only two absolutes: I am born and I die! Just two but these are undeniable, incapable of scientific alteration, and the most perfect system to model. Indeed, these two align perfectly with the binary (base two) mathematical system that underpins all computer-based data processing. More interestingly, and in perfect concert with metaphysics, I do not have nor will I ever have any conscious awareness of time before birth or after death. So, that is it! I know with certainty I am born and I will die. Everything else is subject to a large margin of statistical uncertainty including "the science" everyone screams about!

    It follows that if there are only two absolutes in life, then it should follow that these must be the most significant events of humanity: birth and death. And yet it seems we've gotten these two absolutes screwed up!

    Most of us, regardless of nationstate affiliation, are an underclass. There is now and has always been an elite slice of society that operates well apart from the rest of us. The elites say we ought to be grateful their largess has produced an exorbitantly priced elixir that may extend our time by some forecasted amount. We ought to gratefully hand over our ten thousand dollars and "follow the science." Just "stay at home" and "consider that [our] life is not worth living." What was the name of that courageous Indian Maiden in the iconic film "Dances With Wolves?" Stands With A Fist! That is what we need to do much more of, especially to those that scream--follow the science!

    Stay the course.

    Tom

     

     

    LilyMir

    Posted

    Lily,

    Statistics is a complicated discipline understood by few of us these days. Obviously, you've been trained and understand. Thank you for this comprehensive explanation to our community.

    Indeed, don't live as a statistic. Numbers are precise; they mean one thing. Statistics use numbers to add veracity to uncertainty. The result is misunderstanding and despair. Aim for life enjoyed every day. Funny, I've never seen a statistical projection for joy!

    Stay the course.

    Tom 

    Roz

    Posted

    Roz,

    This is a remarkable story about a superb result that only happened because you had the courage and tenacity to insist on treatment. 

    Your story also points to the importance of consulting with all medical disciplines who treat lung cancer: thorasic surgeon, pulmonologist, medical oncologist and radiation oncologist. The latter is not often seen but as you’ve demonstrated has very effective treatment tools to apply. 

    I do look forward to hearing you tell us of future scans showing diminished cancer until it is gone! And, you are NED!

    Stay the course. 

    Tom

    Susan Cornett

    Posted

    Susan,

    I had a similar conversation with my doctor Friday with the same prognosis--about of COVID-19 will put me in the grave. He says to stay inside (or well socially distanced in my front yard) and do not mix with the public under any circumstances. He's not even sure if a vaccine is enough protection and suggests I'll need to wait till herd immunity develops. That could be several years.

    So I am homebound and down to watching birds, answering forum message boards, and writing my novel.  Yes, I'll rig up my camera and get some photos of the "boss cardinal" and post them up.

    Stay the course.

    Tom

    Susan Cornett

    Posted

    Susan,

    I've had so many scheduled trips cancelled, I've become an expert in travel insurance claims!

    My medical team all suggest a strict quarantine till herd immunity is established. This due to my very low pulmonary capacity and the primary attack point of the virus is my under capacity lung. I'm sitting this one out confined to the house or driving Martha to a shopping destination and remaining in the car. Martha disinfects everything brought into the house including Amazon packages and the mail. 

    There is much clamor to open the nation and oddly I think that is a good idea. There won't be herd immunity till the virus spreads through a large portion of our population. A vaccine may help but I'm troubled by reports I've read about re-infection with COVID-like symptoms. So this may behave like our annual flu virus where virologists take a best guess at a vaccine formulation that may not have any effect on the virus in circulation. 

    One more thing I think about---I don't want to have waged a successful campaign against lung cancer to be taken out by a simple virus! So, I am staying inside and....

    Staying the course.

    Tom

    Susan Cornett

    Posted

    Congratulations Susan!

    Four years is a wonderful milestone and next year, you might move to semiannual scans! 

    Thank you for being an advocate for lung cancer awareness and for your support of those who join our forum seeking guidance and answers. Research is vital to improving outcomes but your work on our forum is equally vital in making the case that hope is still a good thing.

    Stay the course.

    Tom

    DanielleP

    Posted

    I like your pivot approach. It does a fine job of sorting the wheat from the chaff.  What concerns me most however is how prevalent outlandish miracle cure myths have become in our society.  The result is some believe the fairy tale and invest in the cure and "suffer" both economically and medically.  The time for 1870s miracle elixir is done.  Lung cancer is bad enough but chasing hope in a high priced bottle of nonsense is just plain stupid.  I listened to an intelligent man tell me that intravenous Vitamin C was a sure-fire cancer cure.  When asked for evidence, he related that Linus Pauling, Nobel laureate Chemist, killed cancer cells with high concentrations of Vitamin C in a petri dish. Ok, sure, put high enough concentrations of almost any reagent in a petri dish and it will kill cells.  Pauling did believe that high concentrations of Vitamin C, taken intravenously, cured cancer but many subsequent science based studies have failed to ratify Pauling's belief.  Yet this myth lives on and well intended and not so well intended people propagate it!

    We lung cancer survivors already face the self-induced stigma that tamps down research funds for science based treatment methods.  The solution is not to embrace non-science based methods.  We need to go to war against the miracle cure.  Purveyors of these cures need to be publicly ridiculed. 

     

     

      

    Susan Cornett

    Posted

    Susan,

    SBRT is good stuff. It fried my non-cooperating tumor and resulted in my long tenured NED. I've done a lot of reading on the Abscopal Effect and this is reflective of what I've learned. We both share NSCLC that is resistant to targeted therapy and perhaps even immunotherapy, but my chemo-resistant tumor stopped growing and spreading after but three - 15 minute treatments by CyberKnife in early 2007.  I've had quarterly, then bi-annual scans since and all have been NED.

    Tell super rad-doc to lock and load and blast that son of a b&#*& into scar tissue!

    Stay the course.

    Tom

    Tom Galli

    Posted

    Hey! Oh by the way, The Philadelphia Eagles WON SUPER BOWL FIFTY TWO!  Might a cancer cure be in the offing?  There are these ground-shaking situational events that precede dramatic course changes in history.  An Eagles WIN that nudges a CANCER CURE might be the next big swing.  It is the Eagles FIRST SUPER BOWL; cancer cure is by comparison a piece of cake.  My hope is always eternal! Always!

    Go big-midnight-green-football-machine!  E...A...G...L...E...S!

    I'm staying the course for Super Bowl 53!  Two in-a-row has to yield the miracle cure!

    Susan Cornett

    Posted

    Susan,

    Unfortunately, I still get hit right between the eyes.  Case in point, I've had a nagging congested chest condition with a "dry patch" in my throat since mid May.  My GP ordered and ENT endoscope consult followed by an MRI.  So alarm bells are ringing in my head!  Recurrence, even after long periods of NED is common.  Living with the threat is partly finding one's new normal, but the threat is always hanging around my mind and effects my day to day life.  For example, I pay close attention to medical expense and medical evacuation benefits on the travel insurance policy I now purchase for every international vacation.  And, I still have that scanziety drill for my two scheduled oncology consultations a year.

    Lung cancer really is part of my life.  It is ever present in my mind.  Sometimes, I am overwhelmed by its reality.  My only solutions is to....

    Stay the course.

    Tom

    DanielleP

    Posted

    And, what of hope?  What is the essence of it?

    Words inspire me.  They lift my spirit and excite my soul.

    Especially two simple words: faith and hope.

    These words have a natural order. Indeed one must have faith before hope is possible.

    So the question becomes, what is faith?

    Faith is belief, conviction, an unshakable confidence, that something unseen, untouchable, or unknowable exists.

    I have faith my chemotherapy treatments will arrest my cancer.  I cannot see them working, nor can I touch the chemicals.  I cannot know they are working but my belief is strong, resolute and unshakable. I have faith.

    And because I have faith, hope is possible.  What is the essence of hope?

    Hope is an expectation of a good outcome.  For those with lung cancer, we hope against hope. We cling to slim odds; we rejoice at possibility despite monumental probability. Indeed, we who suffer lung cancer are hopers.  And, "hope is a good thing"; "hope is maybe the best of things."

    Hope gives us purpose. It stiffens resolve. It creates strength to endure.  Hope sustains.  Without doubt, hope lifts my spirit and excites my soul.

    "Out of the night that covers me, 

    Black as the pit from pole to pole,

    I thank whatever gods may be,

    For my unconquerable soul."

    I believe I shall live to enjoy the simple things, the little things, the important things. My faith in life is unshakable. I hope to live each day to find little pieces of joy. When found I shall rejoice. For the magic of life is joy. But the essence of life is faith and hope.

    Stay the course.

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