Wednesday, August 31, 2016

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.

Sunday, August 21, 2016

One Year Ago Today...August 21, 2015

One Year ago today I had my first surgical procedure. My PET scan showed multiple, multiple, tiny, star like nodules throughout both of my lungs. This was discussed at my cancer center's tumor board. A tumor board is a panel of oncologists, thoracic surgeons, radiology oncologists and others involved in diagnosing and treating cancer. My tumor board could not come to an agreement about my scan. It was inconclusive. The star like nodules could either be an infection, I had already tested negative for tuberculosis, or it could be cancer that had spread from the main lung tumor in my upper right lobe.

Until this point, the my biggest medical procedure was my bronchoscopy. I was scared. I've never been under anesthesia before. It was very early in the morning. My boyfriend, Jeremy, my mother and I were driving to the hospital. I had my usual satellite radio station playing, 50's on 5. We're pulling into the hospital. I'm thinking all the scary, anxious, thoughts any normal person that has never had surgery would have. And this song comes on while we are parking the car.
The first thing that comes to my mind is, of all the fabulous fifties songs, THIS will be my last song I ever hear if I don't make it out of surgery!!!???!!!!

Don't worry. I pulled through. 

Just as before, the staff were more than considerate when I voiced my fears of medical procedures while they were wheeling me into the surgery room. One man told me not to worry and to think of it as a day at the spa. I must have been the first to reply with, "I didn't pick out my nail polish color yet." I made myself laugh. He was not amused. 

My next memory is waking up in the recovery room. Of course, my first surgery experience wouldn't be typical. I got used to that recovery room. I was there the entire day. I was supposed to be moved to a hospital room. But there were no rooms at the inn that day.

It felt like it was almost immediately after coming out of the anesthesia that I was told that the stars were cancer. I remember speaking with my mom and Jeremy over the phone because I was still in a recovery area they were not allowed in.  They moved me off to a corner and as out of the way as possible. But at least at that point Jeremy and my mom were able to come back to see me.

After several, long, hours and being moved one more time, I was released to go home to my three week recovery period.

Friday, August 19, 2016

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 UC Denver Anschutz Cancer Pavilion 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, 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.

Sunday, August 14, 2016

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...


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.

Thursday, August 11, 2016

One Year Ago Today...August 11, 2015

One year ago today I was in the pulmonologist office with my mom. I heard the words nobody wants to hear. It was confirmed. I had non small cell, adenocarcinoma, lung cancer. I had the doctor write out the word, ADENOCARCINOMA.

I asked the doctor what caused my cancer. He said they don't know. But said that it probably wasn't my smoking in my teens and 20's. I was never a heavy smoker and I quit 14 years before my diagnosis. But added that smoking did raise my risks of getting any type of cancer.

Ok. So what do we do about it? At the time the only scan I had was a ct scan. From the ct scan the cancer appeared to be one large tumor in my upper right lobe. If that was it, I was a good candidate for surgery. I was ready to get this thing out of my body, asap! But I needed a pet scan to see just how active the cancer was. At the end of this appointment, the plan was, pet scan first and we would schedule surgery from there.

At this point, things didn't seem grim. I mean, nobody wants to hear they have lung cancer, or any type of cancer. But we had a plan in place, I wanted to get this tumor out of me.

I allowed myself to start my Google searches. I had a diagnosis. I knew what to research.
I can't remember all off the sites my searches took me to. But I remember while I was looking at the search results and realizing things could be grim. But that wasn't me. That's not my case. I have a plan. I'm just going to have surgery and possibly follow up chemo or radiation and I was going to be cured.

Three days later I would find out we were going to need a Plan B.

Wednesday, August 10, 2016

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


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.

You all bring me Peace Lungs & Happiness every day!

Thursday, August 4, 2016

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.