You Take the Good with the Better Than Bad

I had a pet scan and an appointment with my oncologist this week. The pet scan showed what appears to be more evidence of progression at my primary lung tumor spot in my upper right lobe. We've been monitoring this since October 2016.

Lisa Moran, April 19, 2017

The next steps will be two biopsies. Blood work has already been sent to Guardant for a liquid biopsy. Hopefully, something will show up on this test. It's my second Guardant biopsy. The first didn't show anything, not even my EGFR gene mutation. I will also do a needle tissue biopsy.

With the biopsies, we are looking for any newly acquired lung cancer mutations and we need to confirm it is lung cancer progression instead of delayed radiation scarring. If it's cancer, I will be adding radiation to my treatment plan.

The scarring is a possibility. But my blood work numbers have continued to increase, a sign of progression. Plus, my radiation oncologist office called to schedule my radiation consultation. If you ask me, that's kind of putting the cart before the horse to schedule a treatment consult before my biopsy.

My oncologist said this is a good report. My targeted therapy, chemo pill, is still working throughout my body. There are no new nodules or tumors. There is only this one location of possible progression. Radiation treatments should take care of it.

Several people have referred to this as a bump in the road. It feels more like a detour. Either way, I'll be able to get back on track.

What can make a setback appointment a little more acceptable? A visit to an art exhibit to see paintings and drawings from Monet, Renoir, Picasso, Degas, Matisse and others. Masterworks is currently on display, for free, on campus at my cancer center. I'm thankful for the opportunity to see these works of art in person.

One other good thing happened at my appointment. I was presented an opportunity to participate in a clinical research trial. I submitted blood samples to help research and improve the future of liquid biopsies. Hopefully, one day, because of my participation in this trial, invasive, surgical biopsies could be a thing of the past.

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/

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!

Peace Lungs and Football

I ran into an old gym friend and postal customer this week while I was at work. It had been over a year since we last spoke.  He asked how I was doing.  I said I was fine but followed with, "You won't believe what happened to me. I still can't believe it myself." I proceeded to give him my most condensed version of my lung cancer story. I've got it down to a few sentences for situations like this.

"In August 2015 I was diagnosed stage iv lung cancer. My cancer has a specific genetic mutation. My chemo is a pill. My last scan showed no evidence of disease. I love my job, so I'm still working and things are going well."

I'm very public with my story on Facebook, Twitter and this blog.  My co-workers know about my lung cancer. Delivering mail is one of the few things I have that isn't connected to lung cancer and being sick. I've been very selective in telling only a handful of customers about my diagnosis. But the very few that do know are now my biggest cheerleaders. I know it's no coincidence that the people I chose were either a cancer survivor themselves, had a personal connection to lung cancer or had a close family member diagnosed with cancer after I shared my story.

 

I've had the privilege to publicly share my lung cancer story two times this month. The first was at the Denver Lung Force Walk. It was such an honor to share my story along with three other Lung Force Heroes. Every story you hear starts with the initial lung cancer diagnosis shock and continues with courage, bravery, inspiration and hope.

I was a member of the Lung Force Walk Committee. This was my first time volunteering on the committee. It was exciting to help plan and be behind the scenes of such a successful event.  Thank you to everyone that participated and donated. We exceeded our fundraising goal by raising over $40,000!!!

 

On June 17, 2016 I shared my lung cancer story at the Patient Advocate Breakfast at the International Association for the Study of Lung Cancer.

Patient Advocate Speakers with IASLC staff

At the breakfast I heard the perspective of lung cancer from a 10 year old boy, Coy, who's mother, Kathy Weber, is a lung cancer survivor. If that doesn't hit you in the heart, I don't know what will. Kathy and Coy also spoke of their Pro Bowl experience. Kathy was the second highest fundraiser for last year's Team Draft Lung Cancer Survivors Super Bowl Challenge. Kathy and her family won a trip to the Pro Bowl. I've been interested in this contest since the first time I heard of it.

 

Football and the Cleveland Browns have been a big part of my life. Even more so this last year. I received my lung cancer diagnosis during the NFL 2015/16 preseason. Jeremy and I attended the first preseason game together. At that point we knew I had non small cell, adenocarcinoma.



Browns preseason game, August 13, 2015

The next afternoon was the appointment when we found out it was stage iv. The Cleveland Browns and the Pikes Peak Browns Backers were there for me each week during the first couple months of testing to getting my full diagnosis and adjusting to my radiation and targeted therapy treatments. At the time I was scared to make plans and go places. I called going to games my "Football Therapy". Watching the Browns is not so therapeutic for my blood pressure.  But it felt good to get up and out of the house each Sunday. Treatment could take my energy. But it was NOT going to take away my Browns.

 

Another speaker at the breakfast was Chris Draft, founder of the Chris Draft Family Foundation and Co-founder of Team Draft. Chris' wife, Keasha Rutledge Draft, lost her life to lung cancer in 2011. He is my lung cancer advocacy and fundraising hero. I didn't hesitate to tell him either.  He's an inspiration to me to continue to raise funds and to share my story as often and as loudly as possible while spreading lung cancer awareness.

 

 

 

It's Not Hard To Say Goodbye

I had my follow up appointment with my radiation oncologist, Dr. Ridings, today. She evaluated my spine and said we can say goodbye and there are no additional appointments needed.

My spine may still be weak and it is still healing.  So no running until August 1.  But I'm cleared for non-jarring aerobic activity until then.  The elliptical has always been intimidating to me.  But it may be my new friend.

Goodbye Radiation Oncology and Dr. Ridings

Today was my first (and last) appointment at the new office.  This is not "so long".  This is huge THANK YOU and a bigger GOODBYE to Dr. Ridings and the Memorial Hospital Oncology Radiology Department.

Side Effects or Something Else?

With a higher dose of my targeted treatment pill, Tarceva, I experienced all over muscle aches and pains.  The dose was lowered.  Most of those pains went away.

Lately, I've been concerned with some muscle tightness.  I started doing morning stretches after my last back pain issue. Since I was going to stretch my back every day, I thought I would be good to stretch the rest of my body too.

I realized I'm having issues with more than just my lower back.  Most all my body is tight. There has been no improvement in flexibility after several weeks of daily stretches.  I contacted my oncologist last Friday.  He suggested I hold off on my chemo pill for a few days to see if things improve.  Today is Monday.  I haven't taken a pill since Thursday.

I didn't think it would be too scary to not take my chemo pill for the last few days. I knew I would still have some in my system. I didn't think the cancer would return within a couple days.  But my energy levels were down.  I was also reluctant to carry on with normal activities for a couple days.

I called the oncologist today with my update.  Three days with no pill.  Three days with very little to no change.  So the plan is to go back to my regular dosage tonight.

Maybe I'm just that out of shape.  Maybe the stress on my body has effected me more than I realized.  Maybe this isn't lung cancer or treatment related.

Scanxiety, Shock and Cebration

I had my 3 month follow up pet scan yesterday. I didn't have much scanxiety, anxiety about the results of the scan.  I had been feeling good and almost pain free for two full months. That's until this last Sunday when I started having horrible back pain.  I was so worried the pet scan was going to show progression in my spinal tumor since I was having 10-11 levels of pain on a scale from 1-10.

Lisa before her appointment
April 27, 2016

Well, I found out I'm NED!!!!!!  No evidence of disease!!!!!!  All the tumors and nodules in my lungs and spine are GONE!!!! And it's either a pulled or strained muscle in my back near the location of my spinal radiation.  I've never been so excited about back pain before.

It's surreal.  I was in shock.  My cheeks hurt last night from smiling so much yesterday. It's been a day since finding out and I don't think it's totally sunk in yet.

Lisa celebrating the wonderful news

I'm so very thankful for the prayers, love and support I've received from around the world.  I seriously believe that the prayer requests and positive energy that surrounds me are the reasons I'm considered NED within 9 months of my initial diagnosis. Truly amazing!!!!!!