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.

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.

Facing My Own Mortality

I participate in online lung cancer support groups. It seems like there is a daily post from a caregiver or family member regarding their loved one's lung cancer death. Hearing these stories makes me sad for those families. It also makes me angry. I HATE lung cancer. But after hearing and processing the horrible news of another life lost, my thoughts go elsewhere. I know every lung cancer is different. I think to myself, that's not me, that's not my cancer. I'm so lucky to be as well as I am.

This last week there was a death that hit me hard. It took my thoughts to places they haven't gone. It wasn't a lung cancer death. It was the untimely death of a former co-worker. He was a passenger in a Jeep Cherokee that missed a turn on a mountain road and went down a ravine. Two of the five people in the vehicle died.

It's so unfair. Jacob was a young, smart, healthy, fun loving prankster with his whole life ahead of him. Why is he gone and I'm still here? I have stage iv lung cancer. Shouldn't I, the one with the terminal illness, be gone and Jacob should be here living out his life and carrying out his practical jokes?

I have heard of survivor's guilt. I thought I experienced it. Well, whatever I felt while reading news of a lung cancer death was nothing compared to the feelings that have come up since Jacob's death. I know it sounds strange to experience survivor's guilt in this situation. I wasn't in the accident. He didn't have lung cancer.

I was diagnosed with stage iv lung cancer in August 2015. To tell you the truth, I've thought of my impending death. It's inevitable that one day lung cancer will take my life. I came to terms with that early on. What is difficult to process is the new thoughts of, why am I still here? I have never questioned that. My thoughts, until now, have always been along the lines of, "how lucky am I to be here", not, "why aren't I dead yet?"

I'm a genuinely happy person. My blog is Peace Lungs & HAPPINESS. Can I get back to my happy go lucky self again? I've heard the saying, you can't unsee something. Can I unthink these dark thoughts? Will I always doubt my current existence on this earth? They also say, time heals all wounds. I hope that in time I can get back to appreciating and enjoying every moment of the rest of my life without questioning it.

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!

Countdown to August 1, 2016

I will be released for all physical activities as of August 1. It just so happens to also be World Lung Cancer Day.

I am currently able to participate in low impact activities. After August 1 I'll be allowed to run again. I plan on running at least 1 mile symbolic run on August 1.

This was Week One of my Livestrong at the Y sessions. I'm so excited to get back to working out again. With the program my boyfriend/caregiver and I get free YMCA memberships to use anytime during the 12 week program.

Lisa Moran ready for Livestrong at the Y, June 11, 2016

I went to my first spinning class in a year. It was actually my first fitness class in a year. I have to admit, I got very emotional during the class. I was there, working out, just like before I got sick. I was there, working out! It was just like old times. I even had one of my dearest gym friends by my side. My friend, John, works out at the Y. We used to work out together in group fitness classes at Bally's and have known each other for over 10 years. 

During my spin class I got emotional thinking about being able to do the things I love again. I also thought of an online lung cancer connection, Don Stranathan. He is a seven year stage iv lung cancer survivor.  For several months I've followed his posts about going to his spin classes. His posts have been so inspirational and motivational. Thank you, Don.