This Is Me

My Medical Apocalypse has allowed me to connect with many people and communities on many levels.  I've been able to find others with similarities to my own experiences when they share their fights and struggles.

When I find these connections it makes my own fight and struggles a little easier.  Knowing I'm not the only one helps me. Hearing and learning about others surviving stage IV Lung Cancer, recovering from stroke and living with Moyamoya gives me a sense of community,  guidance to face difficult situations and inspiration to carry on.

This Is Me is my latest article for Lungcancer.net.  it touches on how finding people that share their stories can inspire and unite individuals and communities.

Click HERE to read the article.

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. 

Where Do I Get My Strength?

I've never really questioned where my strength comes from.  

People ask, "How do you do it?, when referring to my attitude, resilience and perseverance while dealing with my continuing, life threatening, medical diagnoses and complications. Someone coined the more than appropriate term,  'Medical Apocalypse', to describe my compilation of ailments and diseases.  Throughout life my general feeling was, my strength came from within. I never questioned it or doubted it. I was lucky to have it.

I met Marilyn Pinaud in the summer of 2016.
We were both speaking and sharing our lung cancer stories at a Lung Force Walk in Denver, CO. Although both of our stories were different, they both started with the same underlying storyline. If our stories were two different newspaper articles, they could have the same headline, "Active, Otherwise Healthy Woman Surprisingly Diagnosed with Lung Cancer"

Marilyn and I didn't live close. I didn't see her very often. We both periodically attended the same lung cancer events. Marilyn was my Facebook friend. I followed her posts about her artwork and her lung cancer treatment plans and options and sometimes, lack of options. Since we didn't see each other often, one particular visit in May 2017 was special. I was at University of Colorado Hospital for what should have been a routine, outpatient needle biopsy. My lung collapsed.  I was admitted for my first ever overnight hospital stay, . Marilyn happened to be at the cancer center while I was in the hospital.  After her appointment she found my room and stopped by to check on me. 

Fast forward to another hospital stay for a different reason.

December 20, 2017: I was admitted to an inpatient acute rehab in California following a hemorrhagic stroke and emergency brain surgery.

 My sister and boyfriend were posting updates on my condition on social media. I had contracted two infections while in ICU after the stroke and emergency surgery. I was very sick and weak. I lost feeling on my left side of my body. I was curled up in a ball in my hospital bed, asleep most of the time. I couldn't wiggle my left toes. I couldn't move or lift my left leg.

As I mentioned in a previous blog entry, something miraculous happened after just days in the rehab. I regained movement on my left side.  Each day I would wake up with much more energy than the day before. It was like I was a new person each morning

December 26, 2017: I stood during my physical therapy session.

December 27, 2017: I walked down the hall of my hospital ward.

December 28, 2017: Two things happened on this day. I received news that my discharge date would be eight days earlier than originally planned because I was recovering so quickly.  I also read a moving message Marilyn Pinaud had sent to me via Facebook, four days earlier, on December 24, 2017. She had offered the strength she had left, at the end of her own life, to me as I was recovering from my stroke.

How do you reply to a message like that?  I wanted to thank her for the sentiment but I didn't want to think of another one of my friends losing their life to lung cancer. 

January 3, 2018: I was discharged from the California acute rehab and flew home to Colorado.

I was home for about a week before an extreme fatigue set in. The rapid recovery I was experiencing in rehab had come to a screeching halt.  I was getting weaker and weaker by the day. It got to the point that I couldn't take more than a few steps without my heart racing and getting out of breath.

I had an appointment with my primary care physician. I told him we needed to figure out what was causing the lethargic type fatigue. Because of the Medical Apocalypse, it could be one or a combination of multiple things.  Was it new medications?  Lingering infection? Or was it lung cancer progression? He listened to my heart and lungs, checked my oxygen level, and ordered bloodwork and a chest xray. The xray showed no pneumonia. 

January 25, 2018: Just as miraculous as my California recovery, two days after seeing my physician, I woke up completely frefreshed and energized. That afternoon my doctor called. I had to go to the ER to be examined for a possible pulmonary embolism (blood clot) in my lungs. Even though my energy had returned and I didn't have any shortness of breath the ER visit was necessary.  The  ER ct scan showed no pulmonary embolism. 

Several days later I learned of Marilyn's passing. She died on January 25, 2018, the same day my energy and strength was renewed. 

Did Marilyn Pinaud give me her strength as she left this earth? I can't say she did. But I can't say she didn't. 

After my lung cancer diagnosis in 2015, I added a ritual to my morning routine. Each day I start with a morning stretch. I take in three deep breaths while I say three things,

Help me, body.

Help me, Angels.

Help me, Universe.

Then after, I take in three more breaths and say,

Thank you, body.

Thank you, Angels.

Thank you, Universe. 

The body is the easy part. It's just little ol' me, standing over here, doing my thing.  The Angels and the Universe are a little harder for me to fathom. The Universe is too vast and complicated for me to try to visualize or comprehend. What is an angel? Who are my angels that i speak to every day?  Sometimes I picture my angels as family members and loved ones that have passed away.

Sometimes I visualize an angel from a set of Christmas cards that I purchased many years back. Now, sometimes, Marilyn Pinaud comes to mind.

R.I.P. Marilyn Pinaud. May you be painting your greatest masterpiece on the largest canvas you've ever seen.  The next time I see one of those unforgettable Colorado sunsets  or multicolored morning skies,  I'll wonder if  your brush was behind it.