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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

Waiting truly does just suck. Not like the hurry up and wait of boot camp. More like waiting in a hospital for word on a loved ones condition. Just it's you. They are most likely waiting on genomic testing results. This will guide their treatment. Normally 2 to 4 weeks. Hopefully you've had an MRI by now and are fully staged. Know this. Lung cancer is not an automatic death sentence. I was diagnosed stage IV with Mets to my liver, skin ,and brain July 2020. The next month I developed a whole new stage 3 head and neck cancer. I've been in full remission since March 2021. If you read the statistics just use them as a guide to treatment. Don't trust them as a guide to life. Trust that you can be treated.

You don't have to wait to be contacted. I urge YOU call the oncology center (assuming that's where you were referred-- I was.) Tell them you've been referred by Dr. Pulmonology and ask for an appointment with a lung cancer specialist. Even better, go to the cancer center where Dr. Pulmonology has referred you, read about the oncologists there, and see who the lung doctor(s) are. If there isn't a lung doctor, it would be best to find one. Lungevity can help with that. If Dr. Pulmonology has referred you to a specific oncologist, call them directly. If they are a generalist, you can go ahead and meet with them, but lung cancer research is progressing so rapidly you really need someone who follows it. I'd also urge you to call your pulmonologist, or contact her/him thru MyChart, to be sure s/he has sent the tissue for biomarker testing. Lungevity has info about that at https://www.lungevity.org/for-patients-caregivers/navigating-your-diagnosis/biomarker-testing It's so hard to wait. Try to breathe deeply and slowly. And please keep us posted. If you want, you may find you receive more responses if you post in the forums.

I agree. I recently posted on Facebook about this. I am a many year breast cancer survivor and always appreciated the support. Now I have a separate lung cancer and feel isolated. I have a lot of support from my friends and family but I agree that the lack of public support is troubling. I know that it affects funding as well. I’ve read that one of the reasons for lack of events,etc is because there are not as many survivors to promote them. Sad

Oh Tom, at the time, all I could do in the middle of the night was write… it eased the pain and numbness I felt because I still cannot believe this is happening to me. I am so glad I found this site. Good information indeed, but I what I see is hope that I might too live more than a year.

Tom, Hope you are feeling better. When I first came to Lungevity I was so relieved to see all your blogs and especially the information on suv values. I had a scan that really scared me because of a high suv value, so glad you wrote the blog and helped me. Unfortunately, the information on google scares the heck out of you. Tom, you have been my lighthouse navigating rough waters. I will keep you and all the bloggers in my prayers......Love Evie

Dear Tom, I'm so, so sorry you are suffering. I hope you will seek ideas from a palliative care person. Most important, I hope there are approaches that might bring you some relief. I wish I had possibilities to offer. I'm sure it feels like some doors are closing, but I'm also sure that you will try to find others you can push open. Please keep us posted. Karen

Beautifully done Tom. Another blog I'll be offering to newbies to the LUNGevity site. Thanks for the contribution. Lou

Congrats on your 20 years! I just read your book "Scanziety". From the bottom of my heart, thank you for sharing your story. I got several treasures from it, particularly about the gift of extended life. "God's Will is for me to live, share my story, and never give up." God willing, I will do the same. Thank you for all that you do and for all the hope you bring. We are all here to help each other. And you and your wife are living proof of this.

Thank you for this … 🙏 I am new here and a 5 year old stage iv survivor. You gave all who find you hope - bless you

Hello Kathy, I will pray for positive results for you. Stay strong and as hard as it is to imagine try to stay positive. Your system can use positive thoughts at this point. There may not seem to be much to be positive about everyday I am alive to be with my family is the focus I use to give thanks daily. Please keep me updated and thankyou for the interest in y story.

I can relate so much. Petrified of being stuck in closed places or drowning. I too have to belightly medicated for scans

Thanks for the good thoughts. As to mutations, I don’t have any that are currently being treated by the new drugs. I was on durvulamab but it did not work. Feels odd to wish I had a stuff.

People just don't know. I hate that it automatically offer me the chance to act as some kind of advocate-- I don't relish that, but I do try to be open about my cancer. I always say something about how I never smoked and I consider it grossly unfair to have gotten it. I mean, truth, right? We can find our own support. It takes time, but there are big communities out there. This one, for example. And if you have had molecular testing and the testing revealed mutations, there are lots of specialized groups. Lungevity has a bunch that meet monthly via video conference, as well as other services. I hope you'll consider checking them out! K

Wow, I can hardly believe this. I find that when I tell someone I have cancer, they automatically think it's breast cancer. It's like lung cancer doesn't exist and yet it kills more people. How can that be? They have breast cancer support groups here, but nothing but a general session for all other cancers. I am finding tho that there are people out there in my situation coming out of the closet.

No, no-- not a broke-down body. A body that has been strong enough to bear you up-- look at what you've been able to do, even as your body has been under the burden of this terrible intruder! You are strong and courageous. Terrified and shell-shocked, yes, but also strong. You can do this. I've been writing about my own situation for more than 2 years. If it helps, take a look. And, be sure anything you read on the web is fro a reputable source. The Lungevity info is top-notch. It will give you lots of info that can inspire some questions. Writing a blog is so therapeutic. As you move through these early days, as questions arise, you will also find the forums great for addressing specific questions. Welcome. Karen

A lung cancer diagnosis hits like a ton of bricks.... Stay the course. Tom

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

Tom, I’m sad to hear that you’re having so much pain. I’ve not been on the site for months and your blog was the first post I read this morning. You have always been a blessing with your right on responses to me and others. I hope you are getting some relief from the medical community who can be so reluctant to prescribe medication for chronic pain. With love from Suzan.

Hi Tom, Sorry to read your blog about the pain, and sleep issues...I too had/have sleep issues, three weeks ago I found insomniacoach.com, Martin Reed....I am doing much better, you might want to check the site out, also I listened to his podcast prior to signing up. I finished my radiation last November 19th, and am having my 4th scan tonight. Prayers and blessing Evie

Thinking of you too, and wishing you'll find some relief. You're such an inspiration to everyone on this site. ❤️

I'm so sorry to hear the pain you are going through, Tom. Keeping you in my thoughts as you navigate this new chapter and hopefully get some relief soon.

Tom - I hope that you can find some relief. Chronic pain is not for the faint of heart. We're all here for you.

Sorry to hear that you are living with chronic pain it can get you down that's for sure, I just wanted to wish you well and I hope a solution is found to make your life a little easier, Sending love and good wishes from Oz Marilyn

Tom, I'm so sorry to hear about your increasing pain. Do you have a pain specialist or palliative care doc on your team? I wish I could email some pain relief and good sleep, or just send it through the air. Or something. You are a model of hope to so many of us. It hurts to see you suffering. Hang in there, dear Tom.

Oh no Tom, so sad to hear about your pain. Damn this disease causes so much suffering even when it is cured! I hope your doctors will find a regimen that works better for you. Is your O2 dipping low day and night? Is this due to mere passing of years or what is the explanation? I feel occasional shortness of breath and find O2 dipping to 90%ish on occasion during sleep (Apple Watch report) but doctor said it is normal for people to have that sometimes unless it happened often. Please take care and reduce risk of infections so you help your lungs. Keep us posted.

Happy Cancerversary! You've been through a lot and I hope your next six are uneventful, cancerwise that is. Have plenty of fun events.

Fabulous.....here's to another 6 years of living!

My heart is broken yet again. Teri was such a wonderful person. The first time I met her at the 2018 LUNGevity Summit, she had on this really cool leather bracelet. I later found a similar one and had to have it because I loved her so much. Every time I wear it, I think of her. Now my heart will be a bit heavier when I put it on. Love you LexieCat 🧡

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

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