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/

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.

 

 

 

Here's to the First Day of the Rest of My Life

It's so hard, mentally, to switch my targeted therapy, chemo pill.  I know the first pill is what helped shrink my tumors and nodules to nothing.  But physically, I have been uncomfortable and in pain.  Physically, that old pill can go away and never return.

Leave it to me to be the only person on record to have the muscle aches, tightness, fatigue and pains that have occurred as a side effect of Tarceva.

This is my current alternative.  Iressa. My new pills arrived last night.  It came with this file box with a very inspirational quote and a pretty decent looking cancer cookbook.

My oncologist described the change like going from Pepsi to Coke.  It's more than likely if I don't have GI issues with Tarceva, I may not with Iressa.  I took my first dose before bed. Let's just say, I'm noticing a slight side effect this morning.  But I would think that's expected anyway when switching meds. All in all, so far, so good.

On the plus side(s), I can take it with or without food.  No more waiting 2+ hours after eating to take my pill.  I don't have to to avoid the sun, which has been a challenge with an outdoor job. No more staying covered and out of the sun. I'm going to give it a couple days to get the Tarceva out of my system.  But I can't wait to be outside in shorts and short sleeves again.

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.

I'm NED! Now what?

This week I received the greatest news a stage iv lung cancer survivor could ever be given.  I'm now considered NED, No Evidence of Disease.  I believed in small miracles.  I now believe in great big, fantabulous, miracles.

But what does that mean?
It means that a little coughing fit from a tickle in my throat yesterday wasn't immediately followed by that little voice in the back of my mind. "Was that a lung cancer cough? Why am I coughing? Oh no, did my tumors and nodules return?"  It's the same voice I hear after any twitch, ache, or pain in my back or legs.

But what does it really mean?
It means that all the tiny stars, nodules and tumors that were in my lungs and spine are not visible in my latest PET scan.  They are gone.  If you can't see them, there's no evidence of disease.

Am I cancer free?
Unfortunately, NO.  I'm No Evidence of Disease. Currently there is NO CURE FOR LUNG CANCER.   Until then, I will always have microscopic cancer cells, not visible on a scan, in my body.

If I'm NED, can I stop my treatment now?
Unfortunately, no.  It was my chemo pill that helped shrink the tumors and nodules down to nothing.  I will continue to take some type of targeted treatment for the rest of my life.  The approach now is more like treating a chronic illness similar to diabetes or high blood pressure.  The chemo pill will keep the lung cancer at bay.

I will continue taking my current treatment as long as it works.  Studies show it's effective for an average of 12-18 months. There is already an FDA approved drug that I can start to take if that time comes.  I've heard survivor stories of being on my current treatment for several years.