LCAM Proclamtions

December 15, 2021: This is at the top of my list of one of the most responsible lung cancer advocacy events I've been a part of. Click the pic for a link to my latest article. 

https://lungcancer.net/living/lcam-proclamations

A Year in Review: Measuring Life in Events Not Dates

I've never been the type of person to remember exact dates of bad or traumatic events.  I know my father passed away in January when I was a child.  But i can't tell you the exact date.  It's the same thing with other family members and friends through the years. Sometimes i can remember what season it was with no memory of a particular month or day.  So, every year when winter rolls around,  i don't focus on the calendar.  January doesn't bring up old memories or sadness.  Sometimes,  i don't think of it at all.

That all changed after Lung Cancer and Moyamoya.  There are some dates I will now never forget and always will remember and celebrate.

 I will never forget the date, August 14, 2015.  I have remembered it and acknowledged this date every year since.

I can't tell you what day of the week it was.  I do know and remember well that it was a work day for Jeremy and me. We were at the tail end of the multitude of tests that i had undergone over the previous weeks.  August 14, 2015 was the results appointment for the final test, a PET Scan.

Up to this point, we only knew about one lung tumor in my upper right lung lobe.  This was the appointment we would find out how active the cancer was.  Being naive and having no first hand experience with cancer, I thought that meant if that tumor was a weak or strong tumor.  That sounds so funny to me now.  It goes to show how much we just didn't know at that point.  We had been focusing on the fact that I was a good candidate for surgery to remove the tumor.  We both thought this was the appointment we would be given a surgery date, recovery time and the info for any follow up chemotherapy or radiation treatments.   Jeremy and I went to work that day.  We broke away for a lunch meeting with my Memorial Hospital oncologist.  We were going to return to work after the appointment.

  This was the appointment we learned I was being diagnosed with STAGE 4  non small cell lung cancer.   My cancer had spread (metastasized) throughout both of my lungs and to my spine.  We heard the words, INOPERABLE, INCURABLE,  and TERMINAL.  We didn't return to work that day.

Why would I want to remember,  acknowledge and celebrate such a day?  I know some people that never talk of their diagnosis.  Some only refer to it as, "The C word".  To me it's almost like a birthday.  I don't remember being born,  but I still celebrate adding another candle to the cake every year.  I hate Lung Cancer and I wish I could forget it.  But you're going to find me every year celebrating my CANCERversary and the fact that I'm still surviving this inoperable, incurable, terminal disease.

Since my last CANCERversary I've had a few notable events take place.  It's been one helluva year!

• Diagnosed with an ultra rare brain disease, Moyamoya
• Brain surgery to treat Moyamoya.
• Survived a hemorrhagic stroke.
• Survived emergency brain surgery after my stroke
• Survived a coma
• Endured eight months of in-patient and out-patient Occupational,  Physical and Speech Therapies and now continue cognitive and executive thinking therapies on my own
• Traveled to Lungevity Hope Summit by myself
• Attended the Lung Cancer Alliance National Advocacy Summit in Washington, D.C. and participated in six meetings on Capitol Hill with Colorado members of congress.
• My Lung Cancer treatment quit working after 33 months
• I had Lung Cancer progression with lymph node activity
• Started my third FDA approved Lung Cancer targeted therapy treatment

They say the truth is stranger than fiction.  I wish I was making this stuff up.  Sometimes I can't believe everything that has happened to me over the last three years.  Then i see this recap of just my last year and realize it's incredible I'm here and able to blog and share my experiences.

Lung Cancer Patent Advocate, Yovana Maria Portillo with Lisa Moran at Capitol Hill

I think it's fair to say the Lung Cancer Alliance National Advocacy Summit made the biggest positive impact this last year.  Lung Cancer advocacy has been important to me since my 2015 diagnosis.  I've known and shared the awareness facts and grim statistics of how Lung Cancer is the number one cancer killer but receives the least amount of government funding.  Lung Cancer Alliance gave me the opportunity to change this, for myself and everyone else diagnosed with Lung Cancer in the United States, which could in turn effect Lung Cancer patients around the world.  Capitol Hill changed me and I changed Capitol Hill.  As a result of my July trip to Washington, D.C., Senator Michael Bennet of Colorado is now a co-sponsor of the Women and Lung Cancer Research and Preventive Services Act of 2018 (H.R.4897 or S.2358).  I keep referring to this as, "My bill".  I mean, in a way it IS my bill.  It effects my future treatments.  It could potentially aid in the discovery of the next EGFR drug to keep me alive.  It could end or lessen the stigma associated with Lung Cancer.  This squeaky wheel will not stop until Senator Gardner and Representative Lamborn are on board too.  Keep checking your inboxes, gentlemen.

This year my CANCERversary party is gong to be my first Shine a Light on Lung Cancer fundraising event.  It will be a combination of an online fundraising campaign and an August 18 party in Colorado Springs. CO, USA.  Donations will benefit the Lung Cancer Alliance. Please join me in this celebration by making a donation, whether in person or online.  No amount is too small.

Super Bowl Challenge

I kicked off my Cleveland Fans Against Lung Cancer fundraising campaign this month. This is part Team Draft's 2017 Lung Cancer Survivors Super Bowl Challenge. This is a friendly competition between lung cancer survivors to raise funds for lung cancer foundations and cancer centers of the survivor's choice. The survivor that raises the most funds will win a trip to the Super Bowl in Houston, TX. Second place is a trip to the Pro Bowl in Orlando, FL and third place gets to attend  26th Annual Taste of NFL.

I set my fundraising goal high. I know with your help I can reach that goal. Lung cancer research funds are critical to my future and my quality of life.

My funds will be donated to the International Association for the Study of Lung Cancer in Denver, CO. I attended my first lung cancer event in September 2015. It was just two weeks after my stage iv lung cancer diagnosis. That event was the Pancake Walk Kickoff Breakfast for the World Conference on Lung Cancer in Denver. That day I was introduced to a handful of peopleand survivors in the lung cancer community. They gave me information, hope and advice that I will always remember and hold near and dear to my heart.

In Week 10 of  NFL season, the Browns have an 0-10 record. The Cleveland Browns may not be going to the Super Bowl this year. I may never get to see the Browns at a Super Bowl in my lifetime. But you could help send this Cleveland fan to the big game this year.

Together we can #tacklelungcancer.

I challenge you to make a donation today and find one (or more) person to match your donation.

Click HERE to make a donation today.

The Ones That Give Me Hope

Earlier this month I attended the GRACE Targeted Therapies in Lung Cancer Patients Forum in Denver, CO. It was a one day conference focusing on lung cancer treatments for patients with genetic mutations, like me.

Lisa Moran at GRACE Targeted Therapies
in Lung Cancer Patients Forum, August 20, 2016

While learning a few new things, I realized I already know a lot there is to know about my disease. Early on I found out that I must be my own patient advocate. The conference was full of other self educated, lung cancer patient advocates.

I was lucky enough to spend some time outside of the forum with these lung cancer patients. I said before that lung cancer was like a sorority that I didn't ask to be a member of. But this lung cancer community is more like a supportive family that I wouldn't want to be without. I learned just as much as about my disease at dinner than at the forum.

Lung cancer patients and family members at dinner

Holding up fingers for number of years we've been surviving lung cancer.
Bottom left: Linnea Olson had to borrow a finger from her son for 11 yrs.

When I first spoke to my lung cancer friend, Mara, on the phone, it was like we were old friends catching up. We had never met. But we had this common ground, kinship, and bond already.

I felt the same way when I met Linnea Olson at dinner after the forum. I was familiar with her. I had seen her profile photos and read about her online.

Linnea Olson, diagnosed with lung cancer 11 years ago

I now know what her profile photos sound like. Her laughter and zest for life are contagious. We shared the biggest, (maybe) too loud for a hotel restaurant, belly laugh at my expense. It was our own "Who's On First?" moment. I was racking my brain trying to remember a session from earlier in the day. Linnea said, "Chemo brain." I agreed and added something about how frustrating it is to have moments when I can't remember things. Turns out the session I couldn't recall was called 'Combating Chemo Brain'.

Linnea Olson and Lisa Moran, August 20, 2016

I wondered what the female version of The Godfather was. I almost felt like I should kiss Linnea's ring. I guess she's the Matriarch of lung cancer? But seriously, she is a remarkable woman, a pioneer in lung cancer research and a true inspiration to me and many others.

Recently the ASCO Post (American Society of  Oncology) published an article featuring Linnea Olson, her lung cancer story and her outlook on the future.

http://www.ascopost.com/issues/august-25-2016/my-oncologists-make-me-feel-safe-even-while-living-with-terminal-cancer/

Just My Luck

Since my lung cancer diagnosis there has never been, why me? When talking about my lung cancer, the words, luck and lucky have come up over and over.

• How lucky am I to have a genetic mutation?
• How lucky am I to live in Colorado, so close to University of Colorado Cancer Center and possibly the best lung cancer doctors in the world?
• What luck to be diagnosed just weeks before the World Conference on Lung Cancer in Denver and I was able to register and attend a session.
• How lucky am I to have a beer dedicated to me and brewed in my honor?

That's right! My own beer! My friend, Todd Greiner, is behind this. He made a home brew. I taste tested it in April 2016 during a visit to Ohio. That is when the beer was, I don't know how to say it, 'gifted' to me. He said he wanted me to name it. He would brew the beer in my honor and portions of the proceeds would go to lung cancer awareness and research fundraising. After some brainstorming, we had a name. Lisa's Luck Amber Ale was created.

Todd entered Lisa's Luck in a brewing contest. He won! Fifth Street Brewpub in Dayton, OH is brewing 14 kegs of Lisa's Luck Amber Ale. It will be available on tap mid September.

Todd brewing the first batch of Lisa's Luck Amber Ale

at Fifth Street Brewpub on August 18, 2016

The beer will make it's debut at the Lisa's Luck Tapping Party and fundraising event on September 17, 2016.

Click HERE for details and to RSVP.

Stage IV Lung Cancer/One Year Ago Today...August 14, 2015

One year ago today Jeremy and I went to the appointment to get the results from my pet scan. We scheduled it for lunch time. We had plans to break off of work, go to the appointment, get the info and plan of action and return to work.

With the ct scan only, we knew there was a large tumor in my upper right lobe and I was a good candidate for surgery. We thought we were going to find out when my surgery would be scheduled and what the recovery time would be. We got some very different and shocking information...

INOPERABLE, INCURABLE,

STAGE IV LUNG CANCER WITH METASTASIS TO THE SPINE

We did not return to work. That wasn't what we had prepared ourselves for.

Lisa's 8/14/2015 Facebook post, hours after diagnosis

Not many stage iv lung cancer survivors get to celebrate a one year CANCERversary.

I got to have one hell of a celebration last night.

F*ck lung cancer with LessThan Zero
at the 1 Year CANCERversary Party

Lisa doesn't play bass, but looked the part
while sharing her lung cancer story.

Lisa and Jeremy

I'm sure that out of the ones that get to celebrate the one year mark, not many are NED, like me.

I did not beat lung cancer. I am not cured. I don't get to celebrate winning. I celebrate surviving. My fight is ongoing and has no end.

I would love to say I'm no different than I was a year ago. But so many things have changed.
I've lost:

• Energy
• Half of my hair
• My complexion
• Friendships
• A year of exercise and running
• Fears
• Life as I knew it

But I've Gained:

• A new appreciation of life that I think I could I have only achieved by facing the possibly of death head on
• Friendships
• Fears
• New traditions
• New motto: No missed opportunities...When you have a 4 hour layover in Utah. Don't sit in the airport. Jump in an Uber and track down the best burger in Salt Lake City.

It Takes A Village

I hope I don't forget anyone. I want to give a shout out to everyone that has had a hand in my diagnosis, treatment and quality of life over this last year.

First, my family and friends. This has been quite a year. And if I needed anything, you were there. Most of you dropped your personal life to be by my side. Thank you and I love you.

Again, I will edit this post and add to this list of I realize I forgot anyone.

Colorado Springs Family Practice
C. David Bird, MD

Pulmonary Associates
Steven Mohnssen, MD

Memorial Hospital Cancer Center
Lisa Allison, Nurse Navigator
Sayla Dennington, Social Worker
Victoria Cortez
Dr. Blum
Dr. Ridings

Bonnie J. Addario Lung Cancer Foundation

International Association for the Study of Lung Cancer

#LCSM Chat

American Lung Association in Colorado
Lung Force

University of Colorado Anschutz Medical Campus
D. Ross Camidge, MD, PhD

Lifespark
Sylvia
Cece
Judy

Livestrong at the YMCA

Team Draft
Chris Draft

In addition to this list, I want to acknowledge and thank my online support groups and lung cancer message boards. I won't list them, because I know I won't remember all the sites. Also, some of the groups are private. They are with me 24/7.

I can't imagine having lung cancer and going through this before social media. This lung cancer community has answered many questions, given plenty of advice, calmed many anxieties and raised my hopes.

Team Peace Lungs & Happiness was created just days after my diagnosis. I immediately had this sense of love that embraced me from all over the world. Team PLH is a global effort. I can't thank my family and friends enough for all your thoughts, prayers and support. Thank you for sharing my story with so many of your friends, colleagues and church congregations while calling on them to send me good thoughts and prayers. The power of positive thinking and prayer is a wonderful thing. Get ready for some exciting Team PLH announcements in the coming months.

The one person that has kept me together the most over the last year is my boyfriend, Jeremy. I say, "when we got lung cancer". I'm the one that has to go through the medical procedures, but we are in this thing together. He has been my rock, sounding board, counselor, doctor, voice of reason and shoulder to cry on. If we made it through the last 12 months, we can endure anything. He's a keeper.

There are no words for me to use that can thank the above people and organizations enough. Keep doing what you do so I can continue to live the greatest, happiest, longest, life possible.

THANK YOU FROM THE BOTTOM

OF MY HEART!

You all bring me Peace Lungs & Happiness every day!

One Year Ago Today...August 4, 2015

One year ago today I had the biggest medical procedure I had ever had, up to that point. August 4, 2015 was my bronchoscopy. This is a scope biopsy to get tissue from my largest lung tumor for testing.

I remember some things about that day. To say I was scared is an understatement. I had avoided all things medical my whole life. I do remember the nurse who was in charge of getting me prepped for the procedure. She made things a little easier after I told her why I was so scared.

It's funny how the mind works. Of all the things I should remember from that day, I remember the shoes I had on. They were my new Keds. I bought them that summer and only really worn them with my retro outfit I sewed for the Brian Setzer concert several weeks before. I called them my "cute shoes".

Brian Setzer concert, Hudson Gardens Event Center, June 14, 2015

While I was laying in the bed, scared, I would look down at my shoes and remember how much fun Jeremy and I had at the concert. And I thought about how I felt that day in my retro dress with my cute shoes.

I remember being in the biopsy room. The Drs. and I looked at my CT scan together. We discussed why I was having the procedure. I was given a sedative and someone either said I would smell or I would taste something bad. The next thing I know, I was back in the first room with the nurse and my mom.

I know someone from pathology looked at the biopsy that day, immediately after the procedure. Someone told my mom that it looked like cancer. They would send it off for testing and it would be several days before we would receive a confirmation.

I know my mom told me this news at some point that day. I don't know if it was the sedatives and my selective memory. I can't remember that exact conversation or the location of the conversation. Was I still in recovery? Were we in the car on the way home? Or was I at home?

I do know that I stayed off the Google searches. I didn't want to waste time searching for ailments and diseases I may or may not have. I waited to Google until the biopsy results came back and were official.

World Lung Cancer Day 2016

Today was a very special day for two reasons.

T-Minus 10 Days and Counting

Join us for the Lung Force Walk at Centennial Center Park, Centennial, CO on June 11.

I'm excited about he upcoming Denver Lung Force Walk.  I was able to help brainstorm and plan the event while volunteering on the Walk Committee.  We have a $40,000 fundraising goal for this event. This is much needed funds for lung cancer awareness education and research.

Before the walk I will be sharing my lung cancer story along with other Lung Force Heroes. It's amazing to hear these stories of otherwise healthy, active, never smokers and non smoking women that have been diagnosed with lung cancer.

While we gather, walk and celebrate surviving life with lung cancer we will also be walking in memory of those that we've lost to this most deadly of all cancers.

Join Lisa's Team or Donate to Lung Force