Diagnoses Divided, Where Does A Medical Apacolypse Belong?

After my 2015 lung cancer diagnosis, I found comfort and friendship within the online lung cancer community.  It was a sense of comradery.  We were all in this together.  The common adage: No One Fights Alone.

 After my 2017 Moyamoya diagnosis,  I didn't  feel like part of  my lung cancer community anymore.  I was very isolated.  In addition to incurable stage iv lung cancer, I had a second incurable disease that nobody else had or even heard of before.  With that came a new set of symptoms,  anxieties and feelings I didn't share or discuss with my lung cancer peers.  I put myself in my own category, separate from my lung cancer friends and online support groups.

I searched online for support from the Moyamoya community.  I was looking for the comradery  I found before when diagnosed with a scary,  incurable disease.  I found I was an uncommon case. My Moyamoya was diagnosed without a neurological event like aneurysm or stroke.  Because Moyamoya is so rare,  the support group options were limited.
Most of the people posting in the Moyamoya groups are parents of small children and babies diagnosed with Moyamoya or adults that have experienced strokes or other neurological events that lead to their Moyamoya diagnosis.    I couldn't relate to them on any level.  I didn't feel like part of the that community either.

I was conflicted and alone with my thoughts,  living with two incurable diseases.  I was my own with no sense of community.

I felt even more isolated after my December 2017 stroke. Not only did I survive a hemorrhagic stroke,  I recovered rapidly and continue to overcome my deficits.  I was having a hard time relating to others and their stories.

My isolation and seperations were thoughts that manifested on their own with no particular experiences or situations to cause such feelings. I was having a period of time when I needed to feel 100% understood.  But my Medical Apacolypse is so unique and complicated.  I'm the only one living with this particular
combination of diseases and stroke deficits.

The last couple of months have changed my thoughts.  I have a new sense of self and a renewed sense of community,  in all my communities.  As I was feeling isolated,  I found my stroke "twin" in an online stroke support group.  We both had our strokes on the same day.  We had similar outlooks and attitudes about stroke recovery.   Together, we explored in person stroke support group options in Colorado Springs. Through this connection I found a brain injury/brain disease support group at Memorial Hospital.  They meet once a month and each meeting has included guest speakers, tips and topics that I found helpful in my stroke recovery.

My twin connected me with another stroke survivor, Mike, in Colorado Springs.  He's now my friend, my stroke brother.   I follow his progress and accomplishments throughout his stroke recovery.  Walking is an important exercise in both our recoveries.  We recently cheered each other on during two different stroke walks. One in Denver, The Comeback Trail  5k for the National Stroke Association.

The other was this last weekend at the Heart and Stroke 5k Walk for the American Heart Association.

I was able to attend the Lungevity Hope Summit in Washington DC at the end of April 2018. I was awarded a full travel scholarship thanks to the donations from my Hope Summit Survivor Challenge.  

The trip to DC for Hope Summit was quite an accomplishment.  I utilized the  airport wheelchair assistance program, by myself, for the first time.  That was helpful.  I was able to get to my gates and make my connecting flight at O'Hare on time without any troubles.  Navigating in unknown territory is a challenge with my vision,  cognitive and executive thinking deficits. 

The Hope Summit trip was very important to me.  I needed to be with my tribe and get my sense of connection back with my lung cancer community.  Not only did I get that connection back, 

I realized the lung cancer community was with me the whole time, praying for me and cheering me on through my Moyamoya diagnosis to my surgery,  after my stroke and into my recovery.  It was still the,  No One Fights Alone adage.

Although my Medical Apacolypse is a combination of many things,  I'm learning I'm not alone.  I can break it down to my individual diseases and deficits and reach out to those individual communities.  

And on some days,  like May 6, 2018, all those communities will collide.  May 6 was World Moyamoya Day. I walked the Comeback Trail Stroke Walk with stroke survivor,  Mike, and lung cancer survivor,  Ali. 

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.

Good News Spreads Fast

My Lung Cancer Survivors Super Bowl Challenge is going well. At the moment, I'm in the running for the third place prize. I'm approaching the halfway milestone of my $10,000 fundraising goal.

#RallyAroundLisa

I've turned to social media to advertise and promote my fundraiser and spread awareness. One of these methods is Thunderclap. You can help promote  my Lung Cancer Survivors Super Bowl Challenge Fundraiser. By signing up you will help share a scheduled message on Twitter, Facebook and Tumbler.

Click HERE to join my Thunderclap.

What is Thunderclap?

Thunderclap is a tool that lets a message be heard when you and your friends say it together. Think of it as an "online flash mob." Join a Thunderclap, and you and others will share the same message at the same time, spreading an idea through Facebook, Twitter, and Tumblr that cannot be ignored.

I need the support of 100 people before December 26. With Thunderclap, I'm not asking for donations. I just need 100 people to go to my Thunderclap and click "Support". That's it. If I reach 100 clicks to support me, my Super Bowl Challenge will blast out over social media, one time, at the same time. There is potential of sharing my fundraiser with thousands of thousands of people. 

Click HERE to join my Thunderclap.

Thank you for your support.

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!