What is HOPE?

I was diagnosed with stage iv lung cancer in August 2015. I didn't register for the 2016 LUNGevity Hope Summit. At the time, I was just getting used to life with lung cancer. I followed the social media posts and photos. It looked like a good time was had by all. It gave me hope and inspiration. I got to attend and be in the photos this year.

Hope Summit features inspirational speakers, medical expert forums, lung cancer survivor-specific sessions, and opportunities for lung cancer survivors to connect with other survivors and share their stories. Their stories of hope. Hope Summit is appropriately named because that's what this last weekend delivered. I'm at a new step in my treatment plan. You would think being immersed in three full days of lung cancer talk would be depressing and make me worry about these next steps. It was just the opposite.

As a first time attendee, I applied for and was granted airfare and hotel stay to attend this year's Lungevity Hope Summit in Washington DC . Lungevity provides this so all lung cancer patients have an opportunity to participate in this event.

I also attended an advocate day, which was on the eve of the Hope Summit kick off. I was interested in finding out information on advocacy and how to be more involved, if possible.

On Thursday evening I went out to dinner with a fairly large group of lung cancer patients and survivors. This was one of my favorite moments of my trip. I find it interesting that 17 people, with 17 different backgrounds, 17 different lung cancer stories and probably 17 different combined lung cancer treatments and/or drugs and we instantly bond with one another. Some have had it rough and some have been to hell and back. Some have been dealing with this for months and others for 12+ years. But having lung cancer is our common ground. I heard a good comparison once. Someone was taking about skiing. He said the downhill skier going 70+mph has the same adrenaline rush as the beginning skier, even when they aren't going the same speeds. I'm guessing the 17 of us have the same hatred for lung cancer.

Having time with other lung cancer patients and survivors was my best part of going to Hope Summit. It gave me the opportunity to thank two of them, in particular, in person.

I was at the top of my physical fitness game when I was diagnosed. One of my first fears was the possibility of never running again or working out like I used to. But I watched videos of Juanita power lifting and doing what she loved and what she did before lung cancer. That gave me hope.

The other was Patty. I would see her online, participating in events with Team Draft. Her smile and attitude would shine in the photos and videos.

I knew I wanted to be a part of that. It gave me hope that one day I would. And I did! Down to the wire, Patty was my biggest competition during the Team Draft Lung Cancer Survivors Super Bowl Challenge. If anyone was going to raise more funds than me and knock me out of the running, I wanted it to be Patty.

Several weeks ago this question came up. What is hope? Without thinking too hard about it, this acronym came to mind.

Hope

is

Having Optimistic Perspectives Everyday.

Party With a Purpose

Eighteen years ago, in 1999, I wanted to start my own business. I dreamed of being a party/event planner. But I also wanted to work in the non profit sector. I came up with an idea of planning parties for fundraising events. An example would be a birthday party. It's your birthday. Instead of having a party and receiving gifts, you ask your guests to make a donation to the charity of your choice. I even named my business, Party With a Purpose. But I had just moved to a new state. I was not familiar with the town and vendors that I would need to collaborate with to plan successful events. Party With a Purpose never came to life.

Fast forward to 2017. I won a trip to the Taste of the NFL in Houston, TX. The Taste of the NFL rallies the country's top chefs and the NFL's greatest players to raise money in support of food banks throughout the United States.  They raise funds online, Taste of the NFL events hosted by individual NFL teams and the Super Bowl Taste of the NFL -The Party With a Purpose®.

Yes, Party With a Purpose!!!!! Something that I dreamed of so long ago is real. And I got to be a part of it. I want to thank Team Draft and the Lung Cancer Survivors Super Bowl Challenge for the opportunity to be a part of this year's Party With a Purpose.

I got choked up in my video because of the special meaning behind Party With a Purpose.

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/

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.

One Year Ago Today...July 9, 2015

This is the first in a series of, "One Year Ago Today" posts.

One year ago today, on July 9, 2015, I met the man that ultimately saved my life.  One year ago today was my first appointment with my (then first and new) primary care physician, Dr. C. David Bird.

I explained to him I was having some shortness of breath and a persistent cough. I told him of my intermittent breathing problems and my brief, two appointment, history of going to two different urgent care type facilities and being told told, both times, (Dec 2014, June 2015) that my lungs sounded clear, when obviously to me they didn't feel clear.

At my Dr. Bird appointment I had an xray. That xray showed something in my upper lobe of my right lung. Dr. Bird said, although it may be the cause of my breathing problems, an xray wasn't enough to go on. He ordered a follow up CT Scan. The rest is history.

Why is it important to have a primary care physician? For me more frequent check ups, with one doctor, may have meant an earlier detection, possibly before a stage iv, inoperable, lung cancer diagnosis.

December 2014, I went to an urgent care type facility with what I thought was bronchitis. I was told my lungs sounded clear and my cough was from post nasal drip. Now, at the time I did have a terrible head cold. But at the appointment I made it a point to tell them that I coughed constantly, even without the head cold. I remember saying, "Jeremy says I cough all the time." No xray, no additional questions about my cough, no follow up suggested. I was given sinus meds to clear my head and sent on my way, like every other person with a head cold and post nasal drip that winter.

Fast forward to June 2015. Again, I thought I had bronchitis. I went to a different urgent care type facility. I told this Dr. that I felt like I had bronchitis and I coughed blood one time. I was told my lungs sounded clear and I had the tail end of a virus that was going around. No xray, no additional questions about my coughing blood, no follow up suggested. It really was one time, one cough, but I COUGHED BLOOD! I was given cough medicine and sent on my way, like every other person with that virus last summer.

It's so frustrating to think about stage iv lung cancer having the same symptoms of other, easy to fix, ailments.  It's also frustrating to think about the in and out exam offices and the lack of attention to individual patients. Or is it the lack of lung cancer education in the medical community altogether?

I owe my life to Dr. Bird.  Dr. Bird, a physician that listened to me and followed through until we knew exactly what we were dealing with.

One year ago today my life changed completely. It was just a few weeks later I would find out exactly how much it was going to change.

The Rain in May Stays Mainly on the Brain

The forecast is calling for rain this week. That makes me think of May 2015. It rained 28 days in May last year. We don't get rain like that in Colorado Springs. It was so humid. I was having a hard time breathing.

That's the bad thing about lung cancer. The symptoms are often very similar to other symptoms. My lungs felt so heavy last May. I didn't think too much about it at the time because of our unusual, wet, humid, weather.

I now know it wasn't the weather causing my breathing problems. It was, yet to be diagnosed, lung cancer.

When it rains, and I'm at work, it triggers that memory of my bogged down lungs.

I've been deleting emails from the urgent care type facility that I went to in December 2014. Every time I see their emails it triggers the memory of going to their location, thinking I had bronchitis, and being told my lungs sounded clear. I was told my congestion was caused by post nasal drip. I explained that I cough all the time, even without a head cold.  I was given a list of over counter medications and the appointment was over.

This last week I decided to look at an email so I could unsubscribe from the repeated emails. That's when found the email was a survey.  How was your service? Let's just say I gave them an earful with the limited amount of characters I had to notify them that my post nasal drip cough was later diagnosed as stage iv lung cancer. I haven't received a reply yet.