Archives for posts with tag: advocacy

I am  generally an optimistic and positive person, but I have to say that lately I have been even more hopeful than usual. This is for so many reasons. First and foremost my God and my family. I am beyond blessed to have a close and loving family that supports all my endeavors to raise awareness and do my best to help others. Without them I couldn’t’ do what I feel compelled to do.

date night June 2016

Date night with my awesome husband

I have a wonderful group of friends in the lung cancer community. It is a bittersweet situation to have this group continuously grow. While I love having them in my life, I’m also sorry that we have met under these circumstances. I just attended a LC Leadership Conference hosted by Free To Breathe and met many more great people making noise and advocating for us. Without cancer there are literally hundreds of people I never would have met. They keep me going, they lift me up, and they all inspire me to do more. They are part of my family now.

FTB LCLC2016

Free To Breathe survivors learning how to be better advocates

If you haven’t heard about Vice President Joe Biden’s Cancer Moonshot initiative you MUST read about it! The goal is to dedicate more time and funds to cancer research and to cram 10 years of exciting discoveries and knowledge into just 5 years. For those of us living on borrowed time this brings so much hope and excitement that we could be blessed with more time.

Days, months, and even years. Because that’s what we all want: more time to make memories with our loved ones.

I used to dread birthdays and getting old. Now I pray for them and even embrace the wrinkles. I hope you do too.wrinkles

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May was a very busy month for me. Some work, some play and a lot in between. (this blog is a little long!)

My husband came home from work after 10 weeks!! We only had about 36 hours together before I had to leave, but we get a week together before he leaves again.

Then, I attended my 3rd National Hope Summit in Washington D.C. This is an amazing lung cancer survivor conference put together by the LUNGevity Foundation. The first one I attended was so inspiring and hopeful being able to meet so many other survivors in one room. LUNGevity gets top doctors and experts to give us wonderful, useful information to make our lives easier and they change it up every year.

This year there were about 300 of us (200+ survivors and 100ish caregivers)! I always leave feeling energized and excited about new ways I can raise awareness and help others. I enjoyed spending time with old friends and made many new ones. I’m also so happy my mom gets to attend this conference with me.

Then, straight from D.C. my mom and I flew to Orlando. Along with 2 other survivors, I had the honor of sharing my story and patient perspective to 200 sales reps at Pfizer. We received Rock-star attention afterwards and got great feedback and even questions on how they could do their jobs more effectively. It was a pleasure spending time with the dedicated team at Pfizer and I made many great connections to further our cause.

I also met a new friend, AJ, who has a beautiful heart and made me look deeper into my soul. I look forward to meeting his wife and family one day. I feel like I’ve made another life-long friend. I had a blast hanging out with Juanita and her husband Steve too. We went to the gym, hung out at the pool, went out to eat (several times) and got trapped in a Florida downpour. They’re a special couple that I’m so glad I got to spend time with.

pfizer team

We got home just in time to celebrate Mother’s day and my 45th birthday. We went out to eat at our favorite Mexican restaurant with my parents, then they left for Florida for 2 weeks. We spent Mother’s day with Joe’s family at Game Works. Being a mom has been the greatest gift in my life and I had a wonderful mom as a teacher.

I spent my birthday at the butterfly habitat at Spring’s Preserve. Then we went out for sushi and relaxed at home. I tried to soak up as much Joe-attention as possible in his short stay with us. But this time he’ll only be gone for 3 weeks.

I had lunch with a few great friends and accompanied a few other survivors to their dr’s appointments. I had my quarterly CT scan and biannual brain MRI. Thankfully those were both negative for any cancer and I remain in remission for 3 years now. I used to expect bad news at my appointments – because we all know my cancer will develop resistance to my drug eventually- but I don’t anymore. Thinking negative is not beneficial and worrying only makes it worse. So I choose to enjoy every day with as little fear as possible. I’ve gotten pretty good at it. People often ask how I avoid the anxiety – I really wish I could explain it. All I can say is I refuse to let cancer steal any more of my joy.

My daughter is taking finals and in just a few days will go to her last day of her sophomore year. Two more years of high school!?! Where has the time gone? My first goal I set after diagnosis was to see her graduate high school (she was 11). I feel pretty confident that I will make it to that glorious day.

We attending the grand opening of Veteran’s Memorial park in Las Vegas and hung out with my high school friend Alicia and her family. We also went to a free Joan Jett concert on Fremont Street. It was a great weekend!

I have been busy organizing things (not quite packing) for our next trip. My daughter and I are spending 9 days in Italy. We are crossing places off our bucket list (this is actually on her list). I’m so grateful we get to take this amazing trip to make memories and see a new culture. I plan on eating gelato and drinking espresso every day and she looks forward to fresh Italian pasta and pizza. We have a tour planned for almost every day also. Please pray for travel mercies (and patience on our 14 hours of flying).

Although it’s beyond hot here in Vegas, I do love the summers. We hang out in our pool a lot and go on several trips. Coming up I have a quick conference in Minneapolis, vacation on the beach in Florida (at mom’s condo), a conference in Denver, a lung cancer walk in San Diego, and probably another trip to CA to visit my son.

Hubby comes home in 2 days! He’s going to take care of the dogs while we’re gone then we get a few weeks together. We are definitely learning to enjoy quality time since our quantity is more limited but he’s making a great sacrifice to better his and our future.      I’m so blessed to have such an amazing man love and encourage me.

 Remember:Every day is gift and growing old is privilege not everyone gets to enjoy.

WCD

Today is World Cancer Day. It is truly a global event and was established on  February 4, 2000 and is dedicated to raising awareness of cancer and encouraging its prevention, detection and treatment, pressing government and individuals across the world to take action.
A group of lung cancer bloggers decided to honor this day by writing about some of our relationships with survivors of other cancers. The greatest inspirations to me are from my fellow survivors. No one can truly understand the ongoing trauma, anxiety, hope, and roller coaster of emotions better than another survivor.
Today I am going to share a little about my amazing friend Ali. I met Ali in 1994 when we both worked at Chevy’s Mexican Restaurant. I was a server and she was a hostess. She had this bubbly attitude and a contagious smile that made you happy to be around her. We weren’t very close at the time but I enjoyed working with her.
After a few years, we went our separate ways and I didn’t see her again until she bought a house on my street in 2008. She recognized me (12 years later!) and we started hanging out while our kids rode bikes on our street. We were mostly casual friends and only hung out occasionally until she saw me at the gym one day in 2011, with my bald head, working out with my daughter. I told her I was diagnosed with stage 4 lung cancer and she started crying.
It wasn’t until Ali was diagnosed with cervical cancer a year later that I felt like we kept being put in each others lives for a reason. To support each other, to cry, to laugh, to love.me n Ali               Ali2

Ali initially had a radical hysterectomy and was considered cancer free – YAY!!                But the beast returned exactly a year later. She then had chemo and intense external and internal radiation. I went with her to every chemo treatment, trying to keep her company and she was once again cancer free – YAY!!
BUT the cancer came back the next year. This time she had aggressive chemo in hopes of killing this beast that keeps ravaging her body. This trend of a new tumor popping up every December was getting old. She lost her beautiful, long hair and got a crap-load of other “fun” side effects but I’m happy to say Ali has been cancer free for 6 months!
She has a great husband and 2 sons that she fights for every day. Her life is different now, as all of us with cancer have to adapt to our new normal. Ali has always been relentless at the gym, an avid runner, and even competed in the Spartan Race. She now moves a little slower due to neuropathy but is just as kind, loving, and beautiful as ever.

Ali3                Ali family

Cancer has made us better friends. We have a bond that is unbreakable and I pray we both continue to be cancer free for a LONG, LONG TIME.

I love you Al.

I’ve become an efficient traveler and the queen of packing a lot of stuff into a carry-on bag. I try to avoid checking my luggage whenever possible. I’ve been involved in patient advocacy for lung cancer for over 2 years but this year I have rally racked up some miles!

southwest+airlines

39,066 miles that include 11 round trip flights

3 for pleasure and 8 for business. Of course I always have time to connect with other survivors and advocates so there is pleasure in every trip. That’s ultimately my favorite part of advocating while hoping to make an impact and educate others along the way. I get more hope and inspiration with each connection and it gives me more strength to keep making noise for those who lost their voice.

My son lives in California which is a 330 mile drive from me. I have made this drive 8 times this year bringing my total driving mileage to 5,280 (in addition to daily stuff). I’m so thankful I bought a Hybrid last year!!

My point of sharing this is to say thank you to all that have helped me along the way.
All of these people have helped make this passion of mine possible:

My Lord and Savior – for giving me the desire and strength to help others.

My husband Joe – who rearranges his work schedule and holds down the fort while I’m gone, and is steadily supportive.

My mom – who helps with Devin and feeding my dogs when Joe’s at work and cheers me on every step of the way.

My kids – for being resilient, flexible, and understanding.

My extended family – for your love, prayers and support.

My amazing onc Dr. V – for thinking outside the box and fighting for me.

ALA National office – for allowing me to share my story and fight for more funding.

Lungevity- for helping my voice be heard and letting me be a part of your mission.

Snow Companies – for investing in me and helping me help others.

Free to Breathe – for entrusting your event in my hands and coming to Las Vegas.

All my survivor friends – for giving me hope, encouragement, and never-ending support.

It takes a village and I couldn’t have done this without each of you.

#LCAM15     17,280 people were diagnosed with lung cancer in November alone. Every 2.5 minutes, another person hears the words that will forever change their life… and everyone around them.

1_in_13

To help raise awareness and shed light on lung cancer a group of lung cancer bloggers, made up of survivors and caregivers, wrote a profile every day in November. November is lung cancer awareness month and it is my passion to educate others so everyone knows: ANYONE CAN GET LUNG CANCER.

Many of the people profiled I’ve met in person, some I only “know” online, and a few I was just introduced to. I learned something from each profile and I hope you did too.

The fact is: YOU TOO will be touched by lung cancer in your lifetime. It may be a spouse, a child, other family member, co-worker, neighbor, or yourself – but we will ALL be affected one day. I don’t say this to scare you, but to inform you.

When that day comes, please remember that no one deserves this disease. We all deserve compassion, love, and kindness. Any cancer diagnosis is scary; it’s the words we all dread hearing. Yes there are risk factors, but there is also just bad luck and basic cellular biology.

love compassion

I thank those of you that took the time to not only read these profiles, but shared them in hopes of educating others. I pray you continue to share your knowledge with others when the occasion arises. I also thank all the bloggers who poured their hearts into this awareness campaign.

We’re stronger together!

If you missed any of the profiles or just want to read them again, you can find them all here: http://lcsmchat.com/

November may be over,
but for those with lung cancer,
the struggle continues 365 days of the year.

Jeff McManus – “I used to be a loner before meeting Cara.”

Jeff was a caregiver for his wife, Cara, who passed away in April 2015. She only survived 20 months after being given her stage IV lung cancer diagnosis. They met in 2006 and quickly became good friends. They would have been married for 4 years in June of that year. Jeff confessed to me, “I used to be a loner before meeting Cara. She brought me out of my shell and we started hanging out with friends.”

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Jeff has a PhD in biology and works full time in a research lab. He enjoys his work and his coworkers. In his free time he likes playing trivia with his friends, going to Indie rock concerts, and cooking. He and Cara both loved cooking and often made meals together. He also likes to stay active by riding his bike, another fun activity him and Cara did together, lifting weights, and playing basketball.11701206_10206467281536895_7748489362918094982_n

Jeff became involved with advocacy along with Cara. He raises awareness on Facebook and Twitter to help inform others. Lungevity’s Breathe Deep in Cleveland came about largely due to her efforts. She worked on this project for much of her last year, but unfortunately was not there for the event. She passed away just 2 months before so Jeff spoke in her honor about how much it meant to her. This is something he says he’ll continue. cara

Cara had the ALK mutation but none of the 7 treatments she tried worked for very long.

Jeff confided, “Cara’s passing took everyone by surprise, including her doctors. It happened so fast.”

How did you manage to get through the day after her passing?
“Initially, I was just shocked. The immediate aftermath kept me busy with the funeral and going through her things with her family. It gave me something else to focus on and I had a lot of support from family and friends.” He also befriended a woman online whose husband had just passed away from lung cancer as well. This helped him get through the tough times.

Something you might not know about Jeff is he’s big Star Wars fan. Jeff and Cara actually watched Return of the Jedi on their first date. In fact, his twitter handle: Jeff3263827, is a Star Wars reference.

What inspires you?
“Cara’s life was an inspiration to me because she had something really horrible happen to her and in spite of that, she had a great attitude and continued to live her life. I carry her spirit with me.”

You can read more about their journey on Cara’s blog:http://metastaticfantastic.blogspot.com/

Each day during Lung Cancer Awareness Month (November), a lung cancer blogger will share a brief profile of someone involved with lung cancer. The person profiled might be a patient, caregiver, advocate, researcher, or healthcare provider.
Yesterday Luna Okada profiled Rachel Willeford on her blog http://lunaoblog.blogspot.com/
Tommorow’s post will be on http://samlmixon.blogspot.com/ where she will profile Roz Brodsky..
All profiles can be found the day after posting on the #LCSM Chat blog at http://lcsmchat.com/. A list of links to all the profiles on the original bloggers’ pages can be found at on the #LCSM Chat site on the Profiles in Lung Cancer page.

Denise Cutlip – One of the neatest ladies I’ve ever met.
Twitter: @dennycee

I originally “met” Denise online, who is known as Denzie on Inspire.com. She helps other survivors by sharing her insight and support often going on several times a day, including when she can’t sleep in the middle of the night. She told me “I saw the hopelessness in my family’s eyes when I was diagnosed and I want to help alleviate that for others.” I have no doubt that she has. Anyone who has ever talked to, or met her, can see the genuine compassion and love she has for others.

I got the pleasure of meeting Denise in person at Lungevity’s Hope Summit in DC in 2014. She had vibrant purple hair and an infectious smile. She is a wonderful woman that has really touched my heart.

denise2

Her connection to lung cancer-

Denise is no stranger to lung cancer. Her father passed away when she was just 15 from mesothelioma from working in boat yards and the plastic industry. She then lost her mother to adenocarcinoma lung cancer in 2006 shortly after being diagnosed. So when Denise was diagnosed on 10-10-10 with stage IV adenocarcinoma, her first thought was “Oh crap! What can I do to live longer than 6 months?”

She was given 15 months to live and she felt like she lost all of her independence. She did some research and later connected with other survivors on Inspire. Learning and sharing with others in her position is what gave her courage and hope to carry on. Even though her family just wanted her to rest, she did not want to be a burden on them. So she slowly started doing little things around the house, not only to contribute, but to also feel like a productive person again. She also started with short walks down the driveway, which eventually graduated to down the street, and then to a whole mile. She was finding her “new normal.”

This journey has not come without its hurdles. She had aggressive, concurrent chemo and radiation that kept her disease free for 3 years. But during that time she endured 4 vertebral fractures due to weakened bones, and procedures to deal with the fluid in her lungs and surrounding her heart.

As if dealing with lung cancer is not enough for one person, she was diagnosed with stage I breast cancer in 2014. She confessed “After dealing with stage IV lung cancer, I wasn’t scared about breast cancer at all. It was more of a nuisance. I learned a lot of tools about how to be involved with the decision making.” She had a lumpectomy and radiation and is now cancer free again.

denise

A typical day for Denise:
“ I’ve taken back as much as my previous life as possible.” Working 2 days a week at her previous job scheduling at a radiology office for breast cancer screening, going to the gym a few days a week at the senior center, and driving her cousin or friends to doctor appointments is what keeps her busy. She loves to ride her bike and bake and somehow finds the time to volunteer with ACS community events, such as music festivals, heritage festivals, and info tables at events to educate the public about lung cancer. “I want to correct the misconceptions about it.”

What are you looking forward to? “The holidays and having family over. I love to cook.”

Something you might not know about her-
In the late 70s and early 80s she was a DJ of a punk rock radio show! Of course this totally explains the purple hair she loves to don. She still likes listening to Sid Vicious and the Sex Pistols, The Clash and The Stranglers. This just makes me love her even more!

What do you want others to know about lung cancer?
“It’s not an automatic death sentence. When the doctor tells you you have only a few months to live, it’s based on a curve and no one can predict where you’ll be on that curve.”

What brings you hope?
“New research. That is the hope for the future. I believe that we can survive this. They’re coming up with new treatments all the time and I really think we can live with this as a chronic disease one day.”

It was my absolute pleasure hearing and sharing Denise’s story. She not only made it past 6 months, she’s made it past 5 years and is doing well. I know she will inspire you, just like she has me.

Each day during Lung Cancer Awareness Month (November), a lung cancer blogger will share a brief profile of someone involved with lung cancer. The person profiled might be a patient, caregiver, advocate, researcher, or healthcare provider.

Yesterday Kim Weineke profiled Anne Gallagher on her blog. Read about it here http://aquariusvscancer.com/
Tommorow’s post by Janet Freeman-Daily will be on http://grayconnections.net/, where she will profile Dr. Ross Camidge.
All profiles can be found the day after posting on the #LCSM Chat blog at http://lcsmchat.com/. A list of links to all the profiles on the original bloggers’ pages can be found at on the #LCSM Chat site on the Profiles in Lung Cancer page.

It’s November, which is Lung Cancer Awareness Month. In honor of this, a group of lung cancer bloggers will be interviewing people in the lung cancer community and profiling a patient, caregiver, advocate or health care provider each day. I will be posting them for your enjoyment. I am excited to participate and help raise awareness.

Andy Trahan – “If you have lungs, you’re at risk for lung cancer.”
A 35 year old father of 3, husband, and stage 4 lung cancer survivor. Diagnosed 2-14-13

Andy has been involved in advocacy by speaking to Representatives and Senators to share his story. Along with LCA he helped convince them to sign the bill for Low-Dose CT as a screening option. He and his wife, Leslie, also got a lung cancer specialty license plate in their state of Louisiana. He occasionally connects with other survivors that need support. His dad does a lot of research and connects with other survivors too and his sister created a Facebook page “Andy’s Team.” His brother has helped Andy with his work when he’s not up to doing it himself. Everyone has come together and has a role in the family to support Andy.

the kids' first day of school this year

the kids’ first day of school this year

What is a typical day like for you? I work from home sending reports to banks and finance companies so I drop my kids off at school then work on the computer. I play tennis or go to bible study and then it’s time to pick the kids up from school. The kids have practice so I take my daughters to dance or soccer and my son to flag football. Leslie usually starts dinner, I help the kids with baths, and we eat supper together.
As a family we like to go to the movies. We see almost all the kid appropriate movies out there. The weekends are filled will ball games for the kids and we go to Mass on Sunday and watch the Saints during football season.
What is something people might not know about you – I got symptoms in my freshman year in high school and was diagnosed with narcolepsy. I get a warning ahead of time and get really sleepy, but I take meds to help so I don’t have to live in a bubble 

How are you right now? Physically, I’m doing as well as I ever did before cancer. I’m also at my best place emotionally right now. I’m on a clinical trial and medically, I just got the best scans a few weeks ago…. so I’m doing good.
What do you want people to know about LC? If you have lungs, you’re at risk for lung cancer.

What brings you hope? Seeing new drugs go into trials. That means that I might have another year or two added to my life. The big hope is to skate on these drugs long enough so that the medical breakthroughs stay one step ahead of my cancer until there’s a cure.
I met Andy and Leslie 2 ½ years ago right after his WBR. Their faith and the love they share really touched me and I jumped at the chance to interview him. Thanks Andy!

Each day during Lung Cancer Awareness Month (November), a lung cancer blogger will share a brief profile of someone involved with lung cancer. The person profiled might be a patient, caregiver, advocate, researcher, or healthcare provider.
Yesterday Jill Feldman was profiled by Luna Okada on her blog “Cancer…an unexpected journey.” http://lunaoblog.blogspot.com/
Tommorow’s post will be on http://lil-lytnin.blogspot.com/ where Tori Tomalia will profile Brendon Stiles, MD.
All profiles can be found the day after posting on the #LCSM Chat blog at http://lcsmchat.com/. A list of links to all the profiles on the original bloggers’ pages can be found at on the #LCSM Chat site on the Profiles in Lung Cancer page

supportlungcancerawareness_calendar_print

November is Lung Cancer Awareness Month!! Did you know that?     It seems not many people do.

I’m going to challenge YOU to take part. If you’re reading this, you not only know someone with lung cancer, you will be personally touched by it at some point in your life. (sorry to say)

225,000 people will be diagnosed with lung cancer in the US this year. Approximately 160,000 will die.

That’s 438 people per day!

If a jumbo jet crashed killing 438 people per day – that would get attention!!

Airplane Crash (1)

Here are a few facts:
– Lung cancer is the #1 cancer killer in the WORLD
– It kills more people than breast, prostate, and colon cancer COMBINED yet it receives the lowest funding
– Lung cancer in non-smokers is the 6th leading cause of cancer death in the US
– Lung cancer is on the rise in young , never-smoking women
– If you have lungs, you can get lung cancer

During the month of November a group of amazing lung cancer survivors/bloggers are going to feature someone each day that has been affected by lung cancer. You may not blog but you can still participate.

READ them, SHARE them, and HELP educate others.

If you’re my friend, care about me or my family, or have a personal experience with lung cancer, I am relying on you to help me raise awareness.

It is only after educating the public, we can then tackle the funding issue.

Thank you in advance for your support!

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