Tom Galli

Tom, I'm sorry for the loss of your friend. I second everything Steff said about how you and your description of your friend's like and your relationship about being a much needed inspiration for acceptance and living LIFE.
Bridget 

Tom,
I am sorry for the loss of your friend.  It sounds like she lived a life we all should strive for.  That being said, thank you for this.  Living a full life DESPITE lung cancer isn't something I would have ever accepted 1 year ago for my mom.  Accepting that we will likely only ever hear "Your cancer is stable" and never hear "There is no evidence of disease" has also been hard for me to except.  But hearing stories like this and meeting wonderful folks at the HOPE Summit has helped me to begin to come to acceptance.  My mom and I's daily phone conversations have turned from lengthy discussions about lung cancer to what creation did she work on or what kind of shenanigan did my dad cause.  It's a much needed break for the both of us.  I appreciate hearing how 2 tenured lung cancer survivors talked about all things "life" instead of all things "lung cancer".  So once again, thank you.  Your post put a smile on my face and solidified that it is okay to go on with life.
Take Care,
Steff

Tom,
Thank you for this link (you provided in a reply to my post yesterday).  Very well-written and beneficial - encompassing so much more than what clinic or med school the practitioner has attended. Thank you for reminding me to keep that perspective as well in this journey.  Your surgeon sounds wonderful. I can't imagine the mutual bond you both must have as a result of your experiences and history, and the help he provided for your daughter as well.  That was uplifting to read. Really enjoying your posts, information and willingness to help others on this path.  Thank you.

Susan,
I'm sorry I didn't see this sooner as I would have responded right away. So happy to hear that today is a better day. I hope that the treatment starts as soon as possible and completely understand your frustration and feelings of anxiety. Here's to many more sunrises and sunsets ahead!!
 
Ro

The logical part of my brain knows the SBRT is the way to go.  In addition to the article you shared, I found a lot of great articles about it; very promising.  But today is one of those days - I'm tired/anxious/frustrated/done with cancer and have spent the day in tears.  The last couple of weeks have been stressful with appointments and scans and waiting.  Just ready to get this treatment under my belt and get out of my own head!  

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

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

I meet with Super Radiation Doc on Wednesday - but it will likely be SBRT. 

Tom, I read this originally after my initial post on the newbie topic back in January this year.  I found your reply to my post highly encouraging and all your articles quite "sanguine" as you put it 😊  7 months (and a lot of treatments) later, I'm reading it again and it's still good, if not better.  Thank you. 

Katie, I am out of likes for the day, but this really hit home to me today, with hubby's stage iv dx yesterday and our 1 year wedding anniversary coming up in two days. Trying to balance "how many of those things we were going to get around to one day do we try to squish in now?",  and hoping we don't have to squish them too much", and still being really pissed off that the life were building is going to look so much different and likely be so much shorter in duration than we had thought. 

Still feel that way Susan-every single day!!
 
Ro

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.

Because I know he has limited tolerance for reading up on stuff, this is the one and only thing I've sent my dear hubby to read thus far. Thank you for being a beacon of hope to me and so many others, Tom.

You are blessed to have this surgeon in your life. He sounds amazing! I feel blessed to have the man who did my VATS surgery at M D Anderson. On a day when appointments were doubled up due to an ice storm abating in Houston, he answered all my questions and at my request drew me a picture of what he was describing. He was focused, friendly, amazing! 

Thanks Tom for all your inputs. You are so inspirational. I am reading all your notes. Thanks a lot. It means a lot to us.

Holy crap.  As someone not yet "officially" diagnosed (but with likely cancer revealed during LDCT), I'm ETERNALLY grateful the screening in is available.  No matter what this turns out to be, I want to be out in front of it.
I read all the pros/cons, and I think given the risks that there MAY be, it's an individual decision, but I looked at the data, weighed the pros/cons and decided the advantages far outweighed the risks.

So true and well written Tom!
 
Ro

Love your pictures. Entertainment while sitting in infusion. 
Judy M. 

Tom
Ain't that the truth?!!! Mine are coming up again next week or two. I've actually had so many now I've lost count. For me at least, some of the scanziety has worn off after 21/2 years of this. 
Judy M. 

Susan,
Since receiving the lung cancer diagnosis last summer, I have come to realize that no matter what I feel on the inside, it really is inside me. People do not look at me and see differences, because the scars are hidden. Sharing information with others who are dealing with difficult situations, and/or responding on these forums, has been extremely beneficial. I try to live my life with a smile on my face and recognize that there are many people in the world who need support because their situation is even more difficult than mine. When I go about my day, I can function in my "new normal" and feel quite well physically and emotionally. It's leading up to that next scan that the anxiety sets in..but as Tom said in his post, to stay the course is so important. I wish I knew what else to say. As KatieB said, we did not choose cancer, but once faced with it, we have to figure out how to beat it, stay strong, and move forward. I'm with you and your struggles!!!
 
Ro

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

Thank you all for your thoughtful comments.  I guess, after two years, I'm still adjusting to the dreaded "new normal".  There are many aspects of this site that I enjoy, but coming here to write what is on my mind is probably the best.  My husband understands but you all really understand.  
Wishing you a happy day!

I think both survivors and caregivers want to avoid unlioading their baggage on each other. It's inevitable that we do that some though. One thing I love about these forums is it gives me a place I can unload some stuff without unduly alarming my spouse. I know she wants to make things better for me, but at times I just need to vent or complain or share anxieties. Here others have been through a lot of the same stuff and will understand without feeling responsible or worried. Thanks everybody for  being here!
Bridget O

Susan,
I read your post a few days ago and it really hit me, but I didn't have the words or thoughts of how I wanted to reply since I am not the cancer survivor and don't want to make everything about me.  But I too, as a care advocate for my mom, feel the nagging thoughts in my everyday activities.  And honestly, I think you all do so much better in dealing with those nagging thoughts than I do.  I will use my mom as an example...I speak to her everyday via phone.  Yesterday happened to be the first day we did not talk about cancer, how she is feeling, upcoming appointments, etc for nearly a year.   I had decided after reading your post that I would not be the one to bring up cancer in our phone visits unless something major was going on (I really had to look at what I consider to be MAJOR because I think EVERYTHING is MAJOR!!!). I realized that I was probably putting my nagging thoughts onto her and that is the last thing she needs.  And voila, when I did not bring up cancer she did not either! So, although I cannot help with any "words of wisdom" in regard to dealing with nagging thoughts (since I totally suck at it!!!), I want to let you know that you are not alone. And I also want to say thank you...although I am sure it wasn't your intention, you helped me to realize how I can be unintentionally placing my baggage onto my mom when I really try hard not to.
I hope that those nagging thoughts lessen for you and for all survivors.
Thanks for sharing your thoughts.
Take Care,
Steff

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