Curt reacted to Susan Cornett for a blog entry, 4 years!
Today marks 4 years of survival! By most standards, my path hasn't been as difficult as others. There have definitely been highs - when my hair grew back, my lashes grew in longer - and lows - two recurrences and a secondary cancer diagnosis. But as I say often - I'M STILL HERE! I tell my story to anyone who will listen. People need to know that lung cancer doesn't have to be an automatic death sentence. Does it suck? Yes. Will it change your life? Definitely. But you move forward, one step at a time. Forward is forward ,no matter the speed.
I am looking forward to the Breathe Deep Denton event in April. I enjoy visiting with the other survivors and bringing attention to this cause. I've also been asked to speak at a function in March so I'll be sharing my story again. The more the public understands lung cancer and all of its causes, the better our funding will be for research.
Most importantly, though, is this: I stumbled across this site one night when I was looking for answers. I have met wonderful friends - in person and online - here. Those friends have made this journey easier. Thank you, all.
Curt reacted to LCSC Blog for a blog entry, Still Processing
Off we go - or not, into the wild blue yonder. It seems that my most recent CT scan's results, described as "a little worse" by my oncologist, are indeed cause for some reflection and change. (I'm not quite able to say "cause for concern" yet.) As such, to make the most effective change, per my oncologist's orders, I am scheduled for a needle biopsy on the Wednesday this column publishes. This procedure will determine, if there is a match, to the specific type of cancer tumor that I have. (Without boring you with too many details, the short version is that all cancer tumors are not alike. Biomarkers/genetic mutations such as ALK, BRAF, EGFR, NTRK, PD-L! and ROS1 are the most common, and certain medicines work better against certain tumor types. Variations in the tumor types, such as the ones I've described, is a relatively recent discovery in lung cancer research.)
What this research has led to is another new kind of cancer treatment known as "targeted therapy." This means rather than "flying blind"--to use one of my brother, Richard's, favorite expressions--and employing a one-size-fits-all kind of approach to treatment, oncologists now have specific medicines to infuse when the tumor's genetic mutation is confirmed. Wednesday, hopefully, will confirm something. However, researchers have not discovered all the tumor types so it's possible that this biopsy will reveal nothing useful for me and in effect, I'll be back to square one-ish.
As for what 'square-one-ish' means? It means that I'll likely be infusing medicines that previously worked for a time but whose infusions were stopped after they all ran their successful course years ago. As I've been told whenever this change became necessary, cancer cells eventually figure out what's happening to them and then the tumors begin growing. Once this growth is indicated on the CT scan, a new medicine is usually started, and on and on it goes until, apparently now, for me anyhow. "Targeted therapy" offers lots of new medicines. I just need a match. Unfortunately, there's no guarantee the biopsy will provide just such a match. There's only one way to find out. On Wednesday, we will begin to find out. To say I have a lot riding on this determination is the understatement of the year; at least for Team Lourie, it is. If I'm forced to repeat infusions from medicines that stopped working years ago, it'll be "Katie, bar the door," as we say in Boston which means, "Look out!"
I'm trying not to 'look out' though. I'm trying not to look anywhere, except straight ahead. Just because my life may be at stake, is no time to deviate from the norm that has been my modus operandi over the past 11 years. I'm not quite ready to consider that my stage IV lung cancer survival is coming to an end. Maybe it's just staggering and within a week or so, I'll get my bearings again. New medical information getting me new medical treatment is sure to put a bounce back in my step. For the first time in 11 years, to quote George Costanza from Seinfeld: "I'm back, baby." This could be the jolt my body needs to get me through to the next research level. The Team Lourie strategy has always been for me to try and live long enough to reach the next medical breakthrough. So far, I've benefited from a few: tarceva, avastin and alimta; all miracle drugs according to my oncologist, and here I am, living proof that it has all worked.
Until I hear, post procedure, from my oncologist, in the interim, I am re-experiencing many what-happens-if-and-when emotions that I've not wrestled with for years. Unfortunately, this hospital visit is taking me back to the visit/biopsy I had in Feb. 2009 which confirmed the malignancy in my lungs in the first place. And here I am, hopefully not in the last place, waiting for the results of a biopsy yet again. It didn't work out so good in 2009. I just hope I have better luck in 2019.
Curt reacted to Tom Galli for a blog entry, Grandfather and Survivor
Meet Charlett Emilyrose Wilson, my first grandchild. Her parents, daughter Melissa and son-in-law Bill, are overjoyed. I am ecstatic! Proud would be a vast understatement!
Charlett was born 12-years, 8-months, and 13-days after my diagnosis with NSCLC. I celebrate this joyful milestone in my life for but one reason. If I can live, so can you.
Stay the course.
Curt reacted to Tom Galli for a blog entry, A Life Well Lived
A lady with lung cancer passed early this morning. I knew her well. She survived two surgeries claiming a lung, radiation, and many many infusions of chemotherapy. Indeed, her disease was being treated like diabetes or heart disease — a chronic but controlled condition.
Lung cancer did not claim her and death is not a celebratory event, but living a full and meaningful life despite lung cancer is indeed praiseworthy. In characterizing the lady’s life, full and meaningful are an enormous understatement.
In recalling our years together, I am struck by how few times we talked about lung cancer. We shared a disease but talked about stock shows, cars, fashion, movies, politics, family, travel, ranching, tomatoes, and friends. That she would not achieve NED didn’t bother her a bit. “I’ve got things to do and doing nothing ain’t gonna happen!”
I will morn her passing. I will also strive to emulate her lifestyle.
Stay the course.
Curt reacted to LaurenH for a blog entry, The Long Road Ahead: Garth Atchley (Part 2 of 2)
Facing a lung cancer diagnosis changes a person’s perspective about what matters in life and what doesn’t. Being diagnosed with cancer makes you put absolutely everything else to the side, or totally out of mind. You have the chance to let back in only the things that really matter back into your conscious mind. If you can do that, and spend more time focusing on things that really matter in the present moment, you will have completely changed and improved your mind and your life. I still get caught up in feeling anxious or scared about what might happen in the future and the negative impact it could have on my family, especially my wife and daughters. What’s helped me has been to realize that they are thoughts – they don’t have a physical presence anywhere and if you observe them but don’t chase after them, they go away.
If I could give advice to someone newly diagnosed, I’d probably want to say a few things.
1. Slow down. Information is going to be coming at you really fast and it can be overwhelming, especially with the internet making everything move at hyper speed. Take your time to digest what’s out there in terms of treatment options, support systems, heavy medical information, etc.
2. Get yourself into a respected cancer center as soon as possible. Find an oncologist that you trust and have a good relationship with, and then TRUST that doctor.
3. Take everything, except what your oncologist tells you to your face, with a grain of salt. There is a ton of real, semi-bogus and totally bogus information out there about magical cures and treatments. Ask your doctor about all of them but, in the end, do what he or she advises.
4. Take a step back, look at the road ahead as objectively as you can and try to be practical. It is the “C” word but, after all, it’s an illness not a curse or a death sentence. Come up with a treatment plan together with your doctor, follow that plan and do what you need to do in order to stay healthy
5. Don’t give cancer more power than it already has by thinking you can’t face it and just giving up. You can face it. Maybe not today, or all the time, but eventually and most of the time you can.
Lung cancer is just the same as any other kind of cancer. It will take the people you love just as heartlessly as any other form of the disease. It’s really good at taking people away; men and women, smokers and non-smokers, old and young, any race and origin. In fact, it’s better at that than most other cancers. We could all get cancer, and none of us would deserve it. We should fight it with research funding, trials, promoting new and existing treatments, by helping people pay for treatment, and everything else at our disposal. Not giving lung cancer the fight it deserves leaves us all that much more powerless to stop it from taking away someone we love.
Curt reacted to Tom Galli for a blog entry, A Picture is Worth 15 Years
I'm the guy who paints a toenail for every year I live beyond my February 4, 2004 diagnosis day. This year our toes are LUNGevity Blue to honor the foundation that is dedicated to changing outcomes for people with lung cancer through research, education and support.
There are many people who've been instrumental in my survival and making a life after; none are more important than my loving wife -- Martha Galli. If I can live, so can you!
Stay the course.