Archives for the month of: September, 2015

For 1,461 days I have been knowingly LIVING with stage 4 lung cancer (who knows how long these rogue cells were growing before we found it). September 27th is my 4 year cancerversary. A day, and almost exact time, I will never forget. It was shocking, devastating, sad, maddening, scary, and anything but hopeful. So much has changed in the last four years.

I had just graduated college and was excited to start my new career in the medical field. Our plan was to get established then my husband would look into changing careers also. We had a big, beautiful house, money in savings and we were happy.

After navigating all the treatments: chemo, radiation, 4 surgeries, multiple biopsies, the many fun side effects that came along, and now my targeted drug therapy (AKA my miracle pills) things are feeling more “normal”. My husband is now the sole supporter of our family and at the same great job, we have downsized into a smaller house, but we are still happy.

And so grateful…grateful for our families’ never-ending support and love, for our friends that stuck around when it counted, for my awesome oncologist and medical team, all the amazing and brave survivors that are now good friends, and for God’s promises about our future. Life is good.

We celebrated by having a delicious dinner at PF Chang’s with my family. We celebrate every occasion with food.

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The statistics are grim = a 2% 5 year survival rate for stage 4 LC. This is changing with focus on genetic mutations and targeting the specific driver of the tumors. The survival rates are higher in this population and I’m hopeful these numbers will continue to rise. I’m so hopeful in fact that I want you all to consider this a “Save the Date.”

Next year will be 5 years! I plan on beating the odds and celebrating with a huge party. We’re renting a banquet room, having food, music, dancing, and an open bar (duh, have you met our family and friends?).
If you’re reading this, you’re invited.
You have plenty of time to save up for a flight if you live out of town and we’ll hopefully get a discount on hotel rooms. I’m not kidding – I expect you all there. The more, the merrier!!!

I was very doubtful I would be alive 5 years later, even 4 years later, but I fight every day to have more time with my family. My faith in God gives me the strength I need and my family’s love gives me the motivation. I try to eat healthy, eliminate stress, exercise, travel, and help other survivors. The best part of this whole journey has been meeting other survivors, sharing our stories, and spreading hope. Meeting a 10+ year survivor ( I know 6 of them!) gives me hope that I can do it too. Many unpleasant things have come with cancer, but many great friendships have been made too. These are connections that I cherish greatly.

Exercise is one thing that helps me feel more “normal”. I can’t run anymore but I still really push myself to work hard, sweat, burn calories, and increase my endurance. Some days I have to force myself to go, but I’m always happy that I did. With my limited lung function I sometimes get discouraged because I can’t do what I used to. Then I remind myself of those that are no longer here and push myself for them. Studies have actually shown that you have a lesser chance of recurrence if you exercise regularly. I know this is hard for some, but even short walks make a difference. Trust me there were days I could barely walk around my short street. Baby steps…

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My life now consists of reading and researching about lung cancer every day, talking to other survivors, going to several conferences a year, participating on several advisory boards, sharing my story, and pleading Congress for more money for research. Most importantly, making memories with my family and trying to enjoy each and every day. It’s much different than what I had envisioned for my life, but I’m trying my best to make a difference and make my kids proud.

So save the date people – Tuesday September 27, 2016!!!

Heck

with Rep. Joe Heck (NV), the Foster family, Paul and Brett at the Rally for Medical Research

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About a year after I was diagnosed with stage 4 lung cancer, I had an overwhelming feeling that my life had a new purpose. I truly believe everything happens for a reason and God has a plan much bigger than mine. I kept asking myself: what I supposed to learn from this disease? What I am supposed to be doing with my life? How can I help others?

I initially began volunteering with the American Lung Association. I gathered a team and raised money for their walk and stair climb, got trained to help out with some of their programs, and became a spokesperson for their events. I helped to educate our community about their free programs and they gave me the platform to raise awareness for lung cancer. It’s been a perfect partnership but I felt like I needed to do more. We need more funding for research. For being the #1 cancer killer in the US, lung cancer receives just a fraction of the funding it so viciously demands.

What is an advocate? Well, Merriam-Webster says it is a person who speaks or writes in support of a person or cause. Another definition that I like better is a person who pleads for, or in behalf of another. Pleading… that’s nearly what I do when I share my story, and thousands of others’, to the leaders of our great country.

This past week, I was asked by the national office of the American Lung Association to join them in 8 separate meetings with key members of the Senate and House on the Appropriations Committee. The topic: more funding to the National Institutes of Health (NIH) for medical research. Not lung cancer specifically, but all medical research. This is something that affects EVERY SINGLE AMERICAN. I was escorted by the national CEO of ALA, Harold Wimmer, the national Chair Kate Forbes, the national advocate Erika Sward (love her!) and their legislative counsel, Dale. I had quite the entourage.

on capitol hill  senator cochran

Although it was a long day, beginning at 8am and finishing at 10pm, I was honored to participate and hopefully pull on some heart-strings to make a difference. Oh yeah! This was after a 12 hour travel day due to a 5 hour flight delay in Chicago. Oh Chicago, why can’t your planes ever leave on time?

After an exciting day of walking (lots of walking) and talking on the Hill, I attended an award dinner reception for PhRMA (they represent the country’s leading biopharmaceutical researchers and biotechnology companies). It was wonderful to see the brilliant researchers that are working on cures and drugs for cancer. They keynote speaker was Tom Brokaw. He was captivating and inspiring while telling his experience of being diagnosed with cancer.

AND a bonus! I ran into fellow survivor/advocate extraordinaire Matt and his stunning wife Melissa and Lungevity Superstar Andrea! They put all us “lung people” at the same table so we enjoyed great conversation along with amazing food.

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So….why do I advocate? Because I can. I may be a stage 4 lung cancer survivor, but for the most part I’m healthy (how weird does that sound?) and there are too many that are not. Too many want to make a difference but simply run out of time. In fact 160,000 of them this year alone. That terrifying number includes my grandma, Jenn, Kierstin, Paul, Burton, , and as recently as yesterday, my friend Robin. I know there are many more I’m forgetting just in my small circle (chemo brain = lousy memory). I fight for them. I walk miles, I talk to anyone who will listen, I read and research daily, for those that no longer can and so less families have to experience the devastation of lung cancer.

I believe in a mighty God and I believe this is my life’s purpose. I was a bartender for 17 years, that went to college at 38 to go into the medical field to help others. If you told me 5 years ago that I would be speaking to hundreds of people at a time and going before Congress to ask them for money, I would’ve said you are crazy. I hated public speaking….but I hate cancer even more.

I will be heading back to Washington D.C. next week for the Rally for Medical Research. This will be my 2nd year in a row and I pray they listen to the 263 advocates that will be pleading for more funding.

Please remember growing old is a privilege that not everyone gets to enjoy.

life and breath: outliving lung cancer

for the terminally optimistic

Lunging it up. Fighting lung cancer at 22.

Living with stage IV lung cancer - By Lysa Buonanno

Emily Bennett Taylor

EmBen used to kick butt on the volleyball court, now she's kicking cancer!!

Every Breath I Take

a blog about my journey with lung cancer

A Lil Lytnin' Strikes Lung Cancer

Living with stage IV lung cancer - By Lysa Buonanno

Gray Connections

Perspectives on Lung Cancer, Brain Science, and Other Stuff

life and breath: outliving lung cancer

for the terminally optimistic

Lunging it up. Fighting lung cancer at 22.

Living with stage IV lung cancer - By Lysa Buonanno

Emily Bennett Taylor

EmBen used to kick butt on the volleyball court, now she's kicking cancer!!

Every Breath I Take

a blog about my journey with lung cancer

A Lil Lytnin' Strikes Lung Cancer

Living with stage IV lung cancer - By Lysa Buonanno

Gray Connections

Perspectives on Lung Cancer, Brain Science, and Other Stuff