If No One Fights Alone, Why Do I Feel So Lonely?

I've wanted to make this blog entry for some time. It's been a working title for weeks. I've been searching for the correct wording and message to convey my feelings without making it sound like a pity party or a guilt trip.

Then this week someone did it for me. I read Linnea Olson's latest blog and it said just about everything I've wanted to say and more.

It’s a jungle out here

Posted on June 12, 2017

Pretend for a moment that one hundred people are standing in front of you. The only thing you know about them is that they all have lung cancer. One at a time, each person approaches you and then shares some intimate detail about their lives. Sometimes you sense that you have much in common with the speaker, sometimes little. In each case you get an overwhelming sense of their humanity.

You are thinking about how you would like to get to know some of them better when I drop a bombshell: only eighteen of these people will be alive in five years.

It shocks you but I assure you I have not told you this merely for dramatic effect; statistically speaking, this is an actual scenario. The five year overall survival statistics for all stages of lung cancer cancer are only 18%. At stage IV, that number drops to 2%, or just two individuals out of one hundred.

Statistics only tell part of the story because numbers are not nearly as compelling as living, breathing human beings.

Now imagine what it’s like to be one of those hundred; that you too have been diagnosed with lung cancer; that you too will fall somewhere along this statistical curve.

It is a terrifying feeling, and isolating as well–as many of us feel that friends and family can’t really comprehend the sometimes debilitating anxiety that is part and parcel of our diagnosis.

We often combat that feeling of isolation by connecting with others people living with lung cancer–through support groups, social media, summits, or advocacy work. However, this network can become a double edged sword, as we are now invested in each other’s outcomes. When one of us passes away, a collective shiver runs through the entire community. We grieve, we rage, but we also rightly wonder if we might be next.

Over time, it becomes a trauma–this mix of fear and sadness. And for those whose cancer is considered incurable–and in the case of lung cancer, that would be most of us–there is no post to our traumatic stress. It is ongoing, or OTSD.

We focus on staying alive even as we worry–constantly–about dying. And, because we often don’t look as if we are ill, it is very, very difficult for those around us to fathom what it’s like to live on borrowed time.

Can you plan a vacation six months from now? Is it worth spending the money to get your dental work done? Will you be there when your kids graduate from high school?

As a society there is a great deal of emphasis on planning for the future. When you are living with cancer, it often feels as if the future has nothing to do with you.

I’ve now been living with the idea of dying for over twelve years–more than 20% of my time on earth. How do I do it? One day, one moment, one person at a time.

xo dedicated to all we’ve loved and lost–far too young, far too many

It's not easy living in the 2%. But I'm still living. It's tough being so far away from most of my friends and family. I recently participated in a lung cancer walk. I was a speaker and shared my story at the event. If my mom and sister wouldn't have come from out of state, it would have been me and Jeremy, team of two.

At times it feels like it's just me and Jeremy against the world, against lung cancer and against the clock. More often than not, lately, it's me against him and him against me. We butt heads over the tiniest of things.  In the past we've recognized this behavior and realized it wasn't us. It's the stresses of lung cancer on our relationship. So for those periods of time, it's just me against everything I have and everything I don't have control over.

The next time you see me begging for your support for an upcoming event and we live in the same town, it's not all about the money and donations. It's about needing time together and your presence in my life, how ever long that may be.

How Not To Let Lung Cancer Win

I completed my Livestrong at the Y program. I tried not to miss any Livestrong days at the gym during the program. There was one particular day that I was feeling very down and tired. I just didn't have it in me that day. But my boyfriend gave me a pep talk. If you would put his pep talks in a book, the title would be, "How Not To Let Lung Cancer Win". Think in this instance he used my, no missed opportunities, motto to remind me that I should not stay at home on the couch that evening.

I went to class. It was yoga that day. Even when I was feeling some pain and I was run down from the day, I was there. I was able to fully participate. The instructor said some words that made quite an impression that day and impacted me for the rest of my life. We were holding a pose and she said something along the lines of, "this is how you are today. Recognize it. But it doesn't mean that's how you will be tomorrow."

In my day planner, in July 2016, there is one day marked with several stars. That was one of the very few days I had no pain, no fatigue, and I almost made it through the whole day without thinking or talking about my lung cancer. Those days are very rare. It's only happened a couple times since starting my treatment in September 2015.

I don't post too much about the bad days. My symptoms and side effects are intermittent. If I do complain, in the next few days things are different. My approach is the "life must go on" method. Almost like, putting the negatives in words will give them strength.

I had goals set for this fall that I've had to change or postpone to next year. Remember how excited I was about running again? I was only able to run a couple of times. At the same time as I started running again my side effects started kicking in. I was getting tired more easily. Stomach and digestive issues that I've been lucky enough to mostly avoid were happening often. I was experiencing new types of pain.  I was training to run the Run the Rocks 5k in October. If mental preparedness was all it took, I would have climbed the incline already. But the downside of feeling so well and living a half way normal life is feeling not so well at the same time.

The body and the mind are strange. Does the comfort of friends and family or the excitement of an opportunity/event overpower the negative effects and feelings caused by my lung cancer and treatment? The answer must be, yes.

Surrounded by my dearest friends and with the support of my family, I was able to complete and even run a good portion of the Run the Rocks 5k last month.

This is what Stage iv lung cancer looks like on a good day....and sometimes on a bad day too.

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!

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.

The F Word(s)

The 4th of July has been one of my top holidays. We will be celebrating the 4th on the 3rd this year. Today's activities will include family, food, a festival, friends, fun and fireworks. Some of my favorite F words!  Be safe everyone and enjoy your holiday weekend.