Tom Galli

To add my 2 cents:  I was a life-long smoker (loved it!!) and quit just a few months before cancer diagnosis, because of symptoms I was having.  Although I'd quit, it was still deeply -- DEEPLY -- embarrassing to realize that I'd smoked all my life and now had smoker's (small cell) lung cancer.  I wanted to crawl in a hole and die.  But I took some deep breaths, remembering that I HAD quit, had done all I could to rectify, that smoking is not 100% death sentence (only about 15%, I'd had bad luck, that's all), was doing quite well in treatment, was finding that I had a very good attitude toward the cancer, life and death -- and, little by little, I got my pride back!  Very important thing, pride.  It's important to be able to hold your head up, not least because quality living, if not survival itself, depends a lot on attitude.  No matter your cancer, nothing out there has say over your pride, claim it for yourself.

This was just lovely, Tom.  I loved seeing her enlarged photo as well!  Teri was very helpful in sharing her experience with VATS Lobectomy prior to my own in October 2018.  She was amazing in all that she contributed here on this forum.  I am not on the forum often (I'd like to be more), so I was not on top of her condition and learned later that she had been dx'd again.  It really hurts to lose someone like her.  Amazing gifts she gave during her lifetime. I know I will never be able to respond as fast, rattle info off so quickly or deal with cancer as gracefully as she did, but she is really a beacon to follow.  Thank you for posting this, Tom.❤️

I hear you and am glad you can reach out here. Sometimes I think people just can’t handle it.  I have no children of my own but have always been close to my nieces and nephew, children nof my oldest sister. I know this situation is a bit different but my sister was very ill and died in November, the day I got the results of my Ct, which was taken for another purpose. I did not tell any of my family until I got the pet scan and biopsy. I called each of the kids and talked to two, who have been supportive from a distance. The niece I have been closest to over the years did not respond for a week and then was very distant. I have not heard from her since. I know those kids went through a lot with my sisters illness and she has had other things but it still hurts.  So I can relate.  I do think, as I said earlier that people may not be able to handle all that goes with this disease.   It sounds like your lobectomy went well and any further as well. My mass is contained in my upper left lobe, with one lymph node outside the lung so no surgery. I am having chemo and radiation (which I finished this week) and then immunotherapy.  I am optimistic and hope you are too.  There are many supporting folks on this site welcome

I discovered I had lung cancer in decemeber 2022. Once I told my sister she wanted me to start calling and informing a list of people so she could talk about it! I said no and she got mad. I then told her that I did not want her telling people at holiday parties. She again got mad. Ultimately she ghosted discussions about me and when my mother was asked about me by cousins, she shussed her. 
For one thing, I can understand why people don't disclose lung cancer. Part of the reason I did not want to be the topic of holiday gossip. Plus, at the time, I had not discussed it with all of my children and it upset me that my sister was all about having something juicy to talk about. For another thing, my family just completely ignored me instead of offering any support or empathy - at my sisters down-playing because I told her not to (while intending to tell close family only) and evident upset that I did not want her to use me as party gossip. I got absolutely zero support from family. Since I missed a holiday gathering - which was early due to sister being out of town and dinner centered around sibling's plane schedule as they all chose to leave on christmas eve and christmas - my brothers and sisters did not give gifts.  (I had actually bought gifts for family prior to surgery)  Seems they/she got mad that I did not travel in zero degree weather 30 miles on bad roads. Fun times. My children (adults) could not make it either because they were working during the week and as well, did not want to risk travel during the extreme weather.
I mean really? Choosing not to travel while in recovery from a lobectomy is something most people would understand, especially when the weather was dangerous.
Has anyone else had family just completely diss you, withholding any type of support, during a cancer crisis? 

Self righteous folks!  I have lung cancer. I had breast cancer at age 33, 42 years ago.  I also feel guilty about smoking and was surprised when a doc described 20 pack years as short!
 

Read that report; it was excellent. And, for me, the timing was perfect. As a stage IV NSCLC, I was taken by total surprise recently while having 3 tumors at back in abdomen radiated: severe unbearable searing stabbing debilitating bone pain (turned out there was more cancer at L-4 that no one knew about). I digress. My younger sister came to the rescue (I'd been driving myself but suddenly could not move). While doing her research, I noticed something interesting. VNS (visiting nurses), my primary care doc, and a few others were pushing my sister to use hospice (rather than some other in-home care groups, private or non-profit), saying it's not for the dying anymore. 
I was shocked. It was like they were parroting a new ad campaign. "They've bought into it," I told her later, noting the NYorker cover story that I'd asked her to read. Still having not read the report, my sis asked my current med onc re: using hospice. My onc nurse looked at me, then back to her, horrified, and told my sister that, as it has been for many years, hospice is for those who are dying. 
Or is it?
It is so disappointing to see these sorts of things happen. It nhappens everywhere and, I suppose, I am not surprised, but as someone above mentioned, I have looked forward to that organization help me transition into the next stage of life. I pray they will still be there, as I remember them. I used hospice for one week for the end of my Dad's life at home (he was 94; dementia)  and they were caring, reliable, and everything I expected. But I see things are changing -- and changing fast. I think we're OK so far out where I am away from the cities, but I do feel we have an obligation to put this info out there, as the NYorker and you, now, have done.
Thanks fo sharing, Trish in CT
 
 

Yes, concerning indeed! Thank you for sharing, Tom. 
In my experience, most hospice companies provide high quality, compassionate care for patients nearing the end of life. Absolutely do your homework should you or someone you know consider transitioning to comfort care. Our team is available for support and can assist in vetting any provider that may be in question.
Please don't hesitate to reach out as needed, mobile 312.639.4529 or KGriffith@Lungevity.org.
kmr  
 

I cannot believe these ladies were so heartless, in a cancer support group no less, what an atrocious thing to do!  
Casting blame on others gives many people a sense of power and superiority; I bet you they never blame themselves when they do something regrettable. My doctors asked me if I smoked but I believe that was part of the diagnosis process. They wanted to assess my risk and predict cancer sub type. Outside of healthy living recommendations, or smoking cessation therapy, there is no place for such discourse.
I am afraid the stigma is very real, and even as a never smoker, I learned pretty quickly that I should not volunteer my lung cancer diagnosis info unless I have to. Heck even having told people I merely have cancer caused them to promptly stop interacting with me (parents in my kid's new school). No empathy even from educators. What a world we live in.

Everyone should be made aware that these scammers are out there. We should let everyone know to do the necessary checks prior to picking a hospice for your loved one (like Lou has done). How can any entity even consider trying to take advantage of a family that is seeking end of like care. It's criminal!!
 
Thanks for alerting us all to this Tom!!
 
Best,
Ro

Tom,
Discouraging to read this.  As someone whose wife is presently in hospice it can give you chills.  In my case the care has been wonderful and the company checked out well before they were brought in (recommended by other Alzheimer's Caregivers).  The care has been excellent and support to the family the same.  I'm lucky, but I can only imagine what some families must go through with these "sham companies".  This can be the hardest period of a family's life and to learn that so many scammers and charlatans are taking advantage of it is really disheartening and it pisses me off.

Thanks for sharing.
Lou

Thanks Tom - diagnosed "officially" last week; staffing of my case and staging to occur during the lung cancer team's meeting this Friday morning 10/28/22.  I was excited today because I didn't have a test or procedure scheduled and did not have to wear sweats/t-shirt/no metal, take off all my jewelry, not eat/drink, etc.
It's all so overwhelming and is happening so fast.  Hope to start chemo next week, and aside from my husband, I haven't told anyone about this yet (was waiting for ALL the information so I could share it in one conversation with each person [son, mother, brothers, girlfriends, etc.] and not have to deal with 15 phone calls/texts a day asking if I found out something else, what the test results showed, when my next test was, etc.). 
I appreciate the info you shared above - very helpful - especially the part about living the life that you have.  I ride an 850 pound Harley Davidson motorcycle (by myself, in other words, my husband has his bike and I have mine), and this past weekend, we rode bikes all weekend like we always do...rode to another state and back on Sunday.  For this reason, I just cannot believe that I am not going to be around in a few months like the stats say for SCLC with malignant pleural effusion. I refuse to believe it - I am going to fight - and whatever happens, I'm going to take your advice and "do something" with every day I get.  Thank you!

Marilyn,
There is no need to replicate or license LUNGevity in Australia. We are an international non profit and Australians are free to use this forum or the LUNGevity.org website. We have many international members and participants.
Stay the course.
Tom

Thanks so much. My first time here today and this helps. 

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
 
 

Still missing you Teri.
LMT

What wonderful people you've had in your life.  It's hard to call someone who went through what you went through "blessed", but if you were going through something this existential and frightening you couldn't have asked for more blessings around you.  What an inspiring essay!

Lou

After posting my own health update today, I went looking for Terri's profile updates to see how she was doing as she and I had messaged privately many times a few months ago and I had thought about her often.  I am so sorry to hear of her passing.  Beautifully written tribute, Tom.  She will certainly be missed by many here.  Continued prayers to all who knew personally.
 

May she RIH!

Great job, Lily!.....
And yes, never live as a statistic!!
kmr 

Great and informative blog, Lily!
I don't ever look at statistics because I just try to do the best I can each day. I don't believe that the statistics apply to me.
We are all on our own individual journey and no one can tell you how long you may have, etc.
I continue to hope for new treatments for all of us!
Congratulations on your blog. I also wrote one in case you want to read it
Mine is called, The Roscopal Effect.
 
Best,
Ro

Thank you for sharing, I’m happy to say that I have never fit and use the statistics for lung cancer and have never really tried to focus on them. I am now at 7 1/2 with Stage IV and despite starting out with a very grim prognosis I am doing well and have now been off treatment for almost 6 years. I do remember looking briefly at the statistics when I was first diagnosed and it was depressing and overwhelming so from that point on I was determined to beat them !  🤍

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 

So very sorry to hear of her passing. I am so new here that I didn’t know her, but she sounded like a wonderful and compassionate woman. Very nice tribute Tom.

Thanks for writing that. She was very admirable indeed, and even though I didn't know her, I always scanned this forum for her name. ❤️

Tom,
  This is very endearing and so well written !  ❤️  Thanks for sharing with us all!   May Teri now forever be free and at peace!