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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

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

LOL, no matter what ever crappy thing happened to me, my mom's go-to response was: "It builds character." Yeah, ticked me off no end.

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

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.

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.

Teri and I connected on the forums after my diagnosis in August, 2017. I always looked forward to her intelligent and thoughtful responses, as well as the humor she paired with her postings. She will be missed by so many and I am proud that I got to attend many zooms with her. May her memory be a blessing to all! Ro

Congratulations, Tom! i second everything Lisa, Lennie and Lou have said! Yay for you!

Thanks for sharing this, Ro. I've just had my first experience with post-chemo/immunotherapy progression (so far mild) and am looking into clinical trials. There are at least three worth consideration at this point, I think--each with a slightly different approach or twist. Two are where I'm currently being treated and the third is where I was first diagnosed (and had my lobectomy and subsequent second diagnosis of Stage IV). I'm waiting for someone there to get back to me to discuss. I've sort of skimmed over people's stories about clinical trials, focusing on what was most relevant for me at the time. Now I'm playing a bit of catch-up. Amazing how the perspective changes when something suddenly becomes deeply relevant to your life! Really happy you're having success with the radiation--hope it continues!

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

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.

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.

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

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

Great analogy! I'm swinging for the fences every day....

Lung (Cancer) is a very nasty opponent...it doesn't usually play by many rules so be prepared to be prepared. No hitters and shut outs are frequent but if you take a swing you never know what might happen.

I love this...it puts into succinct words what I have been trying to do "get busy living"! I realize, with a late-stage diagosis & one recurrence already, that my long term prognosis is not great. I don't have any control over how long I have left, but, right now, I have total control over how I choose to spend it. After healing from nasty radiation burns, I have gone indoor sky-diving (basically a vertical wind tunnel) w/my daughters & grandkids, ridden dirt bikes with the younger boys & am going to their house this afternoon to fulfill my promise of trying to do a flip on their trampoline...if cancer doesn't get me soon, the grandkids "ideas" just might! You have a gift, Tom, thanks so much for sharing it with us. Ruthie

I love that you are focusing on living! And I need to offer some caveats as you continue your lung cancer experience, perhaps for other folks who might be reading your blog than for you. (You sound like you are working your way into understanding that can sustain you and I'm glad for that.) I want to say that your friend's comment enters into the zone we call toxic positivity. It's often what some folks offer people with cancer when they don't know what else to say to show love or support. You're lucky to have such a stalwart friend who has given you something to hang on to that you value. What I want to emphasize is that toxic positivity is also what many lung cancer folks use to beat themselves up (in the privacy of their own minds) if they have a recurrence of cancer after initial treatment. That goes something like this: "Oh, I must not have had enough hope/eaten enough kale/taken enough vitamins/fill in the blank." What I've observed is that you can have all the hope in the world and lung cancer can still recur or spread or kill you. Or, you can have no hope and live for decades. You can eat a totally vegan diet and do all the other stuff you read about and have cancer recur or spread, or you can eat sugar and processed meats and live for decades. Some of us find our way to hope swiftly. Others of us take a longer time to understand what hope means for us, or how different kinds of thinking can affect the quality of our days. Some folks don't relate to the discussion of hope at all, and that's OK too. As you say, each person's experience is so individual. I am so glad you are finding your way to equilibrium. Karen

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

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

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.❤️

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

A beautiful tribute to Teri. She will be so missed.

Congratulations on such a wonderful milestone! 18 years as a Stage IV Lung Cancer Survivor is fantastic! Something we all HOPE and want for all! May you have many more years and hope you are safe and warm. Snow and Freezing Rain here too and after last week's blizzard I'm sick of winter!!

Tom, CONGRATULATIONS!!! This is indeed a great thing to celebrate! You service to our country, battle with cancer is inspiring for so many of us who came here for help. But, what continues to amaze me even more than your Army years or even your difficult treatment is how many others you are helping out each and every day. The first thing I give to almost all newcomers is your "10 Steps..." and I often after reading your responses to complex questions I wonder, "where the hell did he learn all this?!". Then I realize you've fortified your personal experience with an acquisition of a lot of knowledge so that you could help people today to navigate their journey through this disease. You have my deep respect and you're a great role-model for the rest of us. Thank you for all the time, effort and caring you've put into this support effort. No doubt you've saved lives and reduced grief and pain for many. Congratulations again on your 18th Anniversary of Life. Lou

Wow...what a great post! Over the last few years I've accepted something I once heard, "Our fears never lessen, but our courage increases each time we face fear down." and that feels right to me. I have a feeling whenever you were diagnosed you would have brought the same grit to the battle. Thanks for sharing. Lou

LOL, I'm just envisioning the puzzled look on the oncologist's face when somebody asks about the "Roscopal effect" and the ensuing argument when they ask if they meant "abscopal." You may have to register that trademark!

Hi LexieCat and Tom and BridgetO, Thank you for your responses to my blog. LexieCat-deciding on a clinical trial is a really tough process. I carefully looked into the research and then went with what my medical oncologist believed was the best option. For my second trial, I also had a second opinion from a different medical oncologist and both agreed it was worth trying I wouldn't go into a trial unless you were physically ready for it. The side effects can be quite nasty, depending on the drugs involved. Luckily, once you are off the trial, the side effects eventually go away. Tom, I look forward to sharing the results of my future scans and am always hopeful for NED!! Best, Ro

After some little thought, what is written here is very good and should be pointed out more often. I suppose it's part of being just human to believe that we are in control when the fact is we are not. I will try to develop a new mindset in this regard...one more thing that is hard about this all...

Sorry that you have to go through this with your mom. We lost our mother and as a stuborn lady that she was, she decided of the moment to let go. At he hospital she waited for me to arrive and then said: " I did have a good life and at 88yrs old am now ready to die!" . Good luck and courage!

Yay for you! Great pics, thanks for posting them. Bridget O

Thankfully, Stage IV approvals are swift...

Susan - I echo your and Tom's thoughts - my mom says all of the time...I didn't beat lung cancer to die from this crap! lol I've been lucky enough to work from home too. I've come to absolutely love it and dread the day I must return to a physical office and coworkers (who aren't the furry, 4 legged type). As a part of management, I have had a voice in what our "new normal" will look like. My state has 4 phases of start-up, each County is considered a separate entity (apparently COVID doesn't cross county lines!). My county just entered Phase 2 (don't ask what that all means because I have no idea!), but it does mean that we are getting closer to going back to "normal" in a month or so. Now that I have a general timeline, my anxiety has peaked. I feel that if I am forced back into my physical office, I have to choose between my job and hugging my parents. I hate that this is a choice we have to make not only for ourselves but our loved ones. While I am less worried about myself or husband contracting the virus, our isolation is driven by our need to see our family. Although my concern has not been related to recreational activities at this point, I have given some thought as to what future concerts and similar large events will look like. I'm scared to think about it because my mom and my favorite thing to do is go to concerts. She has also gotten into the local non-professional hockey team in her town. I got her season tickets this year (prior to COVID) because she had so much fun with her friends at the games last year. I am sort-of hoping that the season will be cancelled so my mom isn't torn as to whether she should go or not. I really wish you had a crystal ball so you can tell us what to expect and what to do! lol

Tom, I should have hired you as my new consultant with your knowledge of travel insurance. As much as I don't want to admit it, I'm pretty sure I'm home for the long haul. My husband and I are considering an RV as a travel option because we can get away but not be reliant on others to clean up after us, feed us, etc. I'm with you - I didn't beat lung cancer to get taken out by this, either. I have plans!

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

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...

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

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.

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

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

Tom- The words you have written here are beautiful!! Thank you for taking the time to write it and to share it! Ro

Doing a happy dance for you today, Susan. 💃

February 22,1019 -- 3 toes! Marked it on my calendar. Stay the course Susan..... Tom

Congratulations Susan!!!! I have told my dad about the red toenail celebration. Hopefully you will run out of toes and have to borrow some like Tom. Lisa

By the way, I'll be adding a two red toe picture today.

Tom, I really appreciate your continued dedication to discussing nicotine addiction, the people who suffer from it, and the need for our country and culture to refocus how we address and manage this health crisis. This affects all of us! If I may share a brief snippet of my life, some may recall that I was diagnosed with Stage IIIA NSCLC (adenocarcinoma) in early 2016, at age 40. I had a brief smoking history from my early 20s and was able to easily quit. I don't know whether addiction is *allowed* to be easy, so I can't say whether it was ever an addiction. I do know that my doctors did not consider me high-risk for lung cancer prior to my diagnosis. My father (not biological, but the one who raised me), was a life-long smoker. He tried so hard to quit, on several occasions. He was successful for periods of time, as well. He was diagnosed the year I moved out of state, just after Thanksgiving. He came up to visit with my mom, just prior to his diagnosis, and he'd been sober for many, many years, but we gave him codeine syrup and whiskey because he was in so much pain from the hacking and the tumor that was resting on his spine. He couldn't sleep lying down, because the pressure was too great to breathe. I visited him at Christmas, just a month later, and he told me that even if he'd known in hindsight he would get lung cancer, he wasn't sure he would have been able to quit. And was he frightened of his disease? Of course he was. He was terrified. It broke my heart. He died the morning after I returned home. That was sixteen years ago. I hate that some diseases are used as punishment for "bad behavior" . That needs to change. There are at least two life affirming facts I want to become prevalent in our culture. 1. Nobody deserves to get lung cancer. 2. Nobody deserves to die from lung cancer.

Hi, Mike. I started my journey with the pulmonologist. I had a nagging cough and, as an asthma patient, already had a pulmonologist. I had been to the ER, though, and had a CT that showed my mass. He referred me to a wonderful surgeon who in turn referred me to an even better oncologist following my surgery. Here's hoping that it is anything but lung cancer.

This is awesome ... and exactly the same way as I feel!! My two favorite sayings: "I have cancer, cancer doesn't have me." and "Live your life, not your cancer." Hi Eleanor! My name is Donna! and Cancer doesn't have me either!!!!