Tom Galli

I just read your story Tom......thank you so very much for your service to our country, God Bless you!!

Tom,
I just read thru your entire blog (if that's what they are called) very interesting read. I found it interesting and moving, also there is some hope for me after all!
Thank you for sharing your story 😀
Roseann

Hi Jane, 
You sure did hit the nail on the head.  The commercial coverage plans are more comprehensive than Medicare.  I'll be in the same situation after my COBRA runs out.  Ironically, the coverage standards spelled out in the Affordable Care Act, do not apply to the Federal programs.  
  If you travel or seek care out of state, then you will need the Fee for Service traditional Medicare with parts A, B & D, then you will need a supplemental to cover the copays.  If you don't mind working with in network benefits then the other option is to look at Medicare Advantage Plans.  
I have a few ideas on how to sort through the plan selection:  you could call the American Cancer Society Help Line, Cancer Recovery Foundation, Gilda's Club's Cancer Community Support Line  or  AARP is likely to be a resource too.  Worth a shot?   https://www.cancer.net/navigating-cancer-care/financial-considerations/financial-resources   
Our financial advisors have a Medicare broker on staff to help make selections as well.   The cancer clinic social worker might have some ideas as well.  Let us know what you find out, it will help a lot of us.  
Michelle 

Thank you to those who took the time to create this helpful resource for all of us! It is clear, organized, well written and invaluable. It also makes me realize that I need to start documenting and paying way more attention as I've had numerous scans, surgery/hospitalization and there is a high probability there will be more to come.
I have one question I'm not sure you can answer. My husband will be retiring soon and we will lose our private insurance plan that is liberal in its coverage. We will both go on medicare when this occurs. I am looking at supplemental plans and want to choose the best one in terms of coverage for pre-existing medical conditions and catastrophic illness coverage. What is the best way to approach finding the best plan? Are there any resources, companies, providers, etc. that can help us make this critical decision? I would be grateful for any advice on this front.

Tom,
This is so good.  Simple, crisp advice.  Thanks for taking the time to share.
Lou

Thank YOU, my friend!
UGH, I am so sorry for the texts and the comments from the aunt brigade. I totally get it, and I know everyone here totally totally understands. Don't you just love when folks' idea of help is help that they can give on their schedule and with their own priorities and preferences?
I'm especially sorry that your aunt's particular sort of self-care is harmful, and that you have to witness that on top of everything else you are dealing with. 
Thank you for the sense of perspective: I have often come close to thinking that one advantage of not having much local family is the lack of interlopers, but I have yet to be wise enough to think that through. Thank you for sharing this nugget of truth with me! You are so right that managing help--wanted or unwanted--is a job unto itself. They don't call them "personal assistants" for nothing! Ha!
And thank you, also, for the point about the to-do list. It is so profound what ticking through a list can do for your soul, isn't it? You raise such a phenomenal point about the list giving us some modicum of control over our days!
I am SO thankful for you, as well. Thank you so much for your kind words, my friend. We are all a family and we are all in this together!
💚💚💚

Tom,
I just got to read this and it is spot on.  I found myself nodding to each of the qualifiers you listed above.  I was really blessed with my pulmonologist and surgeon.  The surgeon was almost like an athlete...moving around full of energy, listening deeply to my concerns and questions, being fully open and honest with me about my disease.  He was well-versed on recent research and offered solid reasons why a resection was preferable to a wedge approach (I was thinking about).  I have access to him through a medical website and the one time I Needed to ask a question he called me back personally (rather than a written response) so that he could respond and make sure I had no further concerns.  
Anyway, nice piece, well written.
Thanks,
Lou

Thanks Tom!  This is so helpful.

Newly diagnosed April 11, 2019, and it is so good to read all of this information from survivors...do not compare my new life with lung cancer to my old one.  I need to start a journal with all of these quotes in it to get me through my dark days.  Thanks to all for sharing...

Tom,  thanks for all of the information.  I am sure I will refer to it time and time again as I go through this journey.  You give me such inspiration, hope, how to survive and live.  Enjoy your cruise!!

Tom,
Enjoy every cruising moment!!!!
 
Ro

Tom, I forgot to tell you to have a great time and enjoy for all of us. 😁

My husband and I fellow cruisers and for us it’s just being on the ship. I’d love to to a transatlantic cruise one day. We missed cruising last year with the cancer stuff but won’t miss again. Have fun and enjoy!!🛳

Yay Tom, I’m with you sweets I am a traveling fool and nothing is going to stop that.  This is an exciting trip.  Hope you have a blast and keep us 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

My miracle was the surgeon.  Chemo did not get rid of it -- she did!    

I agree. If there is a miracle cure there would not be any people with cancer and it would be all over the news. I do however, believe there are things that are truly helpful. For me it was the following: Faith that it was possible to survive, second or third opinions, humor because not only is it healthy and releases dopamine into our system and because the whole reality of cancer is so surreal of course the people in our lives support.  I had a lobectomy 14.5 years ago, then stage IV metastasis 13 years ago and finally a a metastasis to my brain 11.5 years ago. The doctor that saved me was not the doctor who told me they couldn’t offer me much but the second doctor who said we can do this!  He also added to my chemo a drug called Avastin and I have called that my miracle drug. It prevents cancer cells from collecting blood vessels. Now I am only dealing with the late effects of surviving and that’s fine with me. 

Beautifully said (as always!), my friend. Amen. Absolutely. Unfortunately, for my part, I never have the time or energy to lay out the proofs or disputes as thoroughly as I wish to or should. The pivot was, at the end of the day, an almost selfish solution, because it only leads to determining whether the person can be of use for my purposes or my mom's purposes, but it does not solve the root issue, which is absolutely the more important problem. 

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,
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

I've been very disturbed the past few years at the increasing number of articles promoting quack "remedies" for all kinds of conditions that are posted on even credible news sites, mixed in with harmless clickbait and legitimate news items.  My personal opinion is that the mainstream media (which I regularly defend, and believe in) would do well to examine their own contributions to this kind of REAL fake news.  

On 12/20/2017, when the pulmonologist came into the room and said "It's bad. It's cancer" then proceeded to give me the diagnosis of Stage 3, I naiively asked her about the survival rate.  She said "15% survival rate in 5 years" and I believed it.  What she told me sounded like "you will die at any moment!" - I went home and wasn't sure if I should write the will first or start cleaning out my house.  Shortly afterwards, I found this forum and started reading the threads and your comments on these "statistics" resonated with me the most along with "if I can survive it, so can you" comment.
Thank you, Tom, for being my and all others' wind beneath our wings (pardon the cheesy-ness).
MB

I am the cared for, I want to say thank you to all the caregivers.  My husband and caregiver said the saddest and sweetest thing.  “We still have quiet intimacy, a touch, a smile, a kiss.”  Embrass those moments.

I've been so hit or miss here lately that I'm just seeing this.  I'm sorry for your loss, and her family, but it sounds like she didn't give in to cancer and lived her life on her terms.  We should all be so fortunate to live that way.  

Tom, I’m sorry for your loss.  
Take Car
Paula