Starting Over, Catching up and Silver Linings

I'm back in the blog game. 

I didn't mean to take such a long break.  

I had plans for a major change to my blog layout and design for my return.  Instead of a major overhaul, I ended up making some subtle changes.  I'm guessing it looks the same to you.  It pretty much looks the same to me too.

To be honest about the break, I was mentally exhausted and needed a blog break after working on my Team Draft Lung Cancer Survivors Super Bowl Challenge fundraising campaign from January, 2019 until February 2020.  I was all in from November 1, 2019 until Super Bowl Sunday, February 2, 2020 and a then some after that.

I raised a grand total of $13,100. 

Team Draft and I were scheduled to present the $11,790.00 BIG CHECK to Lung Cancer Colorado Fund at the end of March.  We had to cancel the in-person presentation due to Coronavirus and the risks of exposure, restrictions and need for social distancing.

One year on my own.

I still don't feel comfortable going into details on my blog, another reason for the break.  It's time to, at least, let everyone know, I am single and have been for just over one year, officially.  The beginning of May, 2020 marked one year since removing myself from a very toxic relationship, situations and removing my ex from my home and life.  Breakups are crappy.  This one was, no doubt in my mind, The best change I could have made for me and Laynie and at the best time.  It gave me a renewed joy and a sense of freedom to be me, stroke deficits, cancer and all.  It also allowed me to make strides in my stroke recovery.  There was no more holding me back.  I made more improvements in my first couple months without my ex than I did in the whole year and a half after my stroke.  

Quarantine has been treating me well.

Instead of commenting here about the positives that have come to me in self-isolation, I wrote them in a lungcancer.net article, Self Isolation Silver Linings.  

Click HERE

or 

Self-Isolation Silver Linings

to read all the great things that have happened.

Illistration from lungcancer.net Self-Isolation Silver Linings

I'm a poet.

Another cool thing to come out of quarantine was the opportunity to participate in a Writing with Cancer Workshop offered by University of Colorado Cancer Center.  The above article was written before I participated in my first writing session.  Until Coronavirus, these were in-person, in Denver only, sessions.  They are now offering an every other week workshop via Zoom.  From two sessions, I've written three poems.  I will be sharing all of them with you soon.

A beautiful journal that was gifted to me.

My first poem

Rollercoasters

Life with lung cancer is a rollercoaster.  But for me,  I've been on two or more different rides at the same time since my first major medical diagnosis of stage IV lung cancer in 2015.  With so much going on at once, I seemed to have tended to one ride while another ride was taking over my life, health and emotions.  And this all was happening without me recognizing that anxieties and depression had engulfed my thoughts, my physical being and my normally positive outlook on life.

I knew to keep my head on a swivel at construction job sites and while I delivered mail, working around traffic.  It recently came to light that I need to keep my head on a swivel in my medical life as well as my personal and  mental health lives as well.

HERE  is my latest article, Rollercoasters,  for lungcancer.netwww.lungcancer.net.

Click picture for article.

Ignorance is Bliss

March 12, 2019

coming clean

I don't usually share the down sides of my medical life.  I mostly share the positives because, frankly, there have been a lot of great things that have come out my horrible and devastating diagnoses  and medical mishaps. A part of me has the belief that if you verbalize something you give it strength. Then, why would I want to verbalize the negative aspects? But I'm going to share the crap and air my dirty laundry.

soapbox moment

I am disabled and unable to 100% take care of myself.  I can function enough to get by, but I'm doing it with help and guidance of a caregiver.  I'm finding flaws in many systems and organizations that are in place to help the disadvantaged and disabled.  Because I have a whopping $19,000 a year Social Security disability income, I'm not a minor, senior citizen or veteran, I'm living in my own home instead of a nursing home or group home and going to adult day care, I fall in this grey area of qualification for assistance where and when I need it most.  The last few weeks of begging these institutions for help has made me truly realize how and why so many mentally challenged adults are homeless. They fall in that same grey area I'm caught in now.

I expected a full recovery

Things have been hella tough since my December 2017 hemorrhagic stroke.  When I returned home from the California inpatient rehab in January 2018, I was my optimistic self, thinking I would make a total recovery.  I would gain strength, improve movement on my left side, regain my left peripheral vision, I'd return to work as a City Letter Carrier and the cognitive and memory issues would be behind me in no time.

Despite the deficits and disabilities, I have accomplished many great things since my stroke.  Looking back now over the last fifteen months, I can honestly say I don't know how I did it all.  I can say, ignorance is truly bliss. My ignorance to the damage the stroke caused and the deficits I was left with has allowed me to achieve, otherwise, unattainable goals.

I can't do it on my own

I've always been confident in myself, independent and a self starter.  That part of me translated into my stroke world and stroke recovery. I was a big girl and could do anything on my own, stroke or no stroke.  Turns out, I was way wrong.

Even as I continue to improve and learn new life skills,  I struggle to live life without the help of my caregiver, my  boyfriend, Jeremy. I gave Jeremy the title, “Knower of all Things” because he keeps track of my phone,  day planner, clothes, sunglasses, shoes, medications and every physical item I can misplace while also keeping track of my finances, appointments, activities and daily medical and mental conditions, symptoms and side effects.

I have a brain injury.  I am not the organized, multi-tasking person I was before the stroke and I may never be that person again.  I forget words, friend's names, conversations and events and appointments that are even written in my day planner.  I put my clothes on wrong side out or backwards, or even wrong side out and backwards at the same time and not realize it.  I can't remember to put away the refrigerated items after making a smoothie or sandwich. While I can blog and write short articles, each post and submission takes many hours of writing with breaks, naps and sometimes many days to complete.  That's if I remember to complete them at all. I can't tell you the number of incomplete entries I have sitting in my files. I can start things as simple as letting the dog out, loading the dishwasher or showering for the day and lose track of what I am doing.  At times I get so off track that I start new tasks, go to sleep for hours or for the night without ever knowing I left something unfinished. I've lost track of friendships and communications with friends and family because emails and text communications get confusing to follow.

what you don't know can hurt you

My need for independence and and to do things on my own has caused problems in my life.   I was living and happy with my abilities and the things I could accomplish. I didn't comprehend the amount of time that had gone by.  I didn't know I had forgotten important USPS information and items were being overlooked and left incomplete due to my inabilities to understand, remember or to start and complete the smallest of tasks.

This blind faith confidence in myself caused confusion while applying for Medicaid. What should have been a couple hour process was days and weeks of phone calls and emails to try to figure out why I received an approval letter but no Medicaid information or enrollment card.  To tell the truth, I'm not sure I ever received an acceptable explanation. A local agency that helps disabled people said they could only help me with the application process and can't help with other Medicaid issues. How does that make sense?

not comprehending procedures

When I was unable to return to work, I took advantage of the option to keep my health insurance through my employer.  I was covered, reimbursing the USPS for the coverage when they sent me invoices. The plan was to carry the coverage into my disability retirement application process and be covered through retirement.  I started the application process so many times thinking I could do it on my own. I called my HR Department three times over the last year about the disability retirement application. It wasn't until the most recent call, a few weeks ago, that I was told I was not understanding the process and procedures and going about the steps in the wrong order. I was also told there wasn't a program or person in place to help me complete and submit the application.

I have more capabilities now than I have ever had over the last year, but I continue to struggle with completing the application and remembering where I've left off between attempts.  My brain is smart enough to realize I'm getting confused and able to recognize the problems. It's just not smart enough to gather and compile the needed information and documentation to complete the application process.

losing my health insurance coverage

I didn't completely understand the rules of keeping my employer health insurance.  I knew I had to pay the premiums to keep the policy active. What I didn't know was this was only the case within 365 days of Leave Without Pay (LWOP). I received a letter at the end of February notifying me I was past the 365 days and my health and life insurance policies were terminated as of February 1, 2019.

My brain, that was healing and accomplishing so much, had let me down.  I was forced to figure this out and pick up the pieces. I immediately called my HR department. From those calls I was told, in a very blunt but kind way, “Sorry about your luck,  pal.” Rules are rules, no exceptions and no grace periods, even if I was going to file for disability retirement.

I can't go without health insurance. In addition to the stroke,  I'm in treatment for stage IV lung cancer. I tried to navigate the Colorado health insurance marketplace website.  I called for help. I was lucky enough to be connected to the most patient, caring, understanding customer service representative.  Brenda, wherever you are, you're a saint! She explained everything clearly and slowly so I could take notes. She explained things several times until she and I both knew I was understanding.

unable to pay for life saving cancer treatment

My break in health coverage falls in time for my monthly targeted therapy chemotherapy medication refill.  I notified my specialty pharmacy of the change in my insurance situation when it was time to order my tefill.  At first I was told, no insurance, no problem, just pay the $17,000+ for the 30 day supply out of pocket. Then I was given a number for Astra Zeneca.  I was told on the phone I qualify for the AZ and Me free medication program. I just need to fill out an application and have my doctor fax it in. That was a relief.  But the real relief will come when I have that first bottle of medication in my hands.

moving forward

The next step is to complete the ever daunting and confusing federal disability retirement application process.  My brain is healing and now recognizing when I need help. But I am in this grey area of the system. I don't qualify for Medicaid, so I don't qualify for the many programs that could help me in my daily living and possibly help with this application process.  I know I'm not the first federal employee with a brain injury and mental challenges to apply for disability retirement. By the list of organizations and agencies I've contacted from my letter carriers union to The United Way to The Independent Center to The Colorado Cross-Disability Coalition, you would  think I'm the only one that has ever needed assistance to do this.

I worked hard, graduated out of my outpatient therapies and continued to work on my own to accomplish some of my goals, While I have made remarkable strides. The reality is, I have a long way to go if I'm able to make any more improvements at all.  I will continue to work on daily cognitive and memory exercises on my own. I will keep up with my physical activities as much as the weather, my health and energy will allow. I'll keep walking my dog and returning to my swing dance lessons every week to challenge my body and brain to remember the steps and combos throughout the short class time and from week to week between classes.  I will keep chipping away at this disability retirement application and eventually get it completed and submitted with or without the help of any government or nonprofit agencies.

It's We, Not Me

After a lung cancer diagnosis you run into the question,  Is there anything you wish you knew before your diagnosis that you know now? My answers have changed over the years.  Today, my answer is,  I wish I knew how much burden the diagnosis would put on my relationship with my boyfriend.

Lately,  the biggest challenge has been dealing with the ongoing changes and troubles in our relationship after three and a half years of incurable,  terminal,  lung cancer and a hemorrhagic stroke.

 You would think life would get easier and we should be able to ride the wave by now.  For us,  as soon as we think we've got things under control, it only gets harder.  Our basic relationship dynamic is constantly under stress.

Click HERE or the illistration for my latest article in Lungcancer.net.

The article touches on some of what we are dealing with. We have to learn to adapt, rest, recharge and live with lung cancer and all the added crap that life has handed us.

Skipping out on Life

So many things change and so many variables are factored into a lung cancer diagnosis and trying to find your "new normal".

Sometimes the new normal is the same as life was before lung cancer.

I wrote about this in my newest article
for Lungcancer.net, Skipping Out on Life?

The night I put a flower in my hair, a smile on my face and said, Fuck cancer.

Hanging in There and My first Published Article

December 19, 2018:
Today's a great day with positives all around.

I received a great report from my oncologist.  My lung cancer is stable and my CEA/biomarker is within normal range and the lowest it's ever been.  My next set of tests will be in three months to monitor for possible cancer progression.  Hopefully there will be no change in the next three months.

My first article was published at Lungcancer.net today.  Click on the link or photo below to read it. 
https://lungcancer.net/living/hanging-in-there/

End of the Year Recap 2018

Nov. 30, 2018

Since returning home in January after my stroke, I work on cognitive thinking and memory therapies every day.  I continued to make improvements throughout the year.

Being off of work and at home, we decided it was a good time to get a dog.   We rescued an 8 week old black lab mix girl named Laynie on May 1. She keeps me on my toes and keeps me on a schedule.  Both are good for my stroke recovery.

Adoption day for Laynie May.

When she first got to our house it was almost like both of us were learning and resting at the same level and at the same pace.  We would go for a walk and both run out of energy and slow down at the same time.  We would get home and both of us would nap.  We gradually increased our exercise time and kept on napping when needed.

The summer was filled with long walks in the neighborhood with Laynie.  While I was preparing for this year's Run the Rocks, she was a growing dog and needed to work off that extra puppy energy.

I completed the Run the Rocks 5k on October 21.  I shared my story of being diagnosed with stage iv lung cancer and how much the Run the Rocks 5k means to me.  It's a yearly milestone to celebrate living another year with terminal lung cancer.  This year was even more special after surviving the stroke and walking without using a cane for balance 

Run the Rocks is the most physically challenging 5k I've ever done.  I was determined to complete the 5k this year.  It was my 4th time participating in this event.  Out of all 4 years,  this year,  by far,  was the hardest to complete.  Of everything involved with my Medical Apocalypse, I think it was just athe combination of lung cancer, moyamoya and recovering from the stroke that made it so difficult this year.  

Lisa Moran speaking at Run the Rocks

Run the Rocks finish line.

The Pikes Peak Browns Backers hosted a Whiteout Game for Lung Cancer Awareness at the beginning of November for Lung Cancer Awareness Month.  It was a great event with many club members participating and wearing white.  I shared my lung cancer story at this event as well. 

Pikes Peak Browns Backers Support Lung Cancer Awareness

I ended the fall with a trip to Mayo Clinic in AZ.  I never got my 6 month Moyamoya bypass surgery follow up scheduled with Stanford University Hospital.  That's a whole other blog post in itself.  I was concerned about disease progression and wanted to verify the bypass was holding up. 

My first trip to Mayo was a series of meetings, tests and scans.  I met with my new neurosurgeon.  We discussed what led to my initial Moyamoya diagnosis,  my current symptoms and the tests that would follow that appointment.

I'm not hearing often.  If I am occupied by watching a show or reading a news story  I just don't hear when Jeremy speaks to me.  I had a hearing test to verify if it's my ears not hearing or if it's my brain.   Good news, my brain is hearing and processing well.  Bad news,  I'm just hard of hearing.  (Thanks Tesla.)

I have been experiencing numbness in my right leg and foot.  That side was not effected by the stroke.  I had MRIs and MRAs of my head,  neck and spine to rule ot any neurological causes.  

Good news, I have not had any new strokes!  I have good blood flow from the direct right carotid artery bypass.  The left side looks still looks good.

The areas of numbness may have to do with my spine.  L5  is where the lung cancer tumor was and where I had radiation.  Because it is not brain related,  it may be spinal damage from the radiation or possibly cancer activity.  They couldn't rule cancer in or out by an MRI.  I have a CT scan and lab work in a couple weeks.  If my lung cancer biomarker numbers are elevated,  I'll get a PET scan from there. 

I was the 2nd participant in a Whole Exome Seqencing research study on Moyamoya Disease at Mayo Clinic.  They are testing Moyamoya patients to see if there is a common denominator.  They are also researching to see if there are  specific gene mutations that cause Moyamoya.  Im anxious to find out if I have a known Moyamoya gene mutation.  We already know I have two gene mutations driving my lung cancer.

2019 is just around the corner.  I can't wait to see what the new year brings my way.   I know one new endeavor is in the works.  I've been considering this for some time; I'm going to start writing articles for lungcancer.net.  I will continue to write for this blog and I will share my lungcancer.net articles here.  Im excited to get started.   You will know here as soon as my first article is published. 

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. 

Thanks and Giving

I have so much to be thankful for.

I can't possibly start to list them all. I'm scared I would forget someone. The obvious ones:

• I'm thankful for the power of prayer and positive thinking.

• I'm thankful for modern medicine.
• Lung cancer treatments have kept me alive with a quality of life that is allowing me to be brave enough and my body strong enough to tackle this new brain disease battle.

• I'm thankful for my continued life.
• I was diagnosed with stage iv lung cancer in August 2015. I was recently diagnosed with an ultra rare progressive brain disease.  But we know from researching my cancer brain scans, I've been living with this for over 2 years.  It's even possible I was born with this disease.  We may never know the cause or the time it developed.

• I'm thankful for the love and support from my family and friends, near and far.
• I'm also thankful for the friends that are more like family to me.
• I only know some of these people from being online.  I know I must have met a few of these distant relatives when I was a child and when I was younger. I'm thankful we found each other and are able to stay in touch thanks to Facebook.

• I'm thankful for the kindness of strangers.
• This comes from many places.  It overwhelms me at times to think about the individuals, foundations and organizations that come together to support me, my fundraising, my wellness and my quality of life.

It's the giving season.

Please consider making a donation this Giving Tuesday.

I can't thank the people that have already donated to help me get through my trip to California and recovery from my upcoming brain surgery.  All our savings has been spent on my lung cancer battle.  There is no savings and very limited paid time off work to get us through the next 10-12 weeks.

A Go Fund Me account has been set up to help collect needed funds to get me through this difficult time.  To make a donation to my Go Fun Me account, click the DONATE button.

Lisa Moran Battles Brain Disease

If you prefer to make a Tax Deductible donation this Giving Tuesday, please consider donating to these charities that are near and dear to me.

• Lung Cancer Survivors Super Bowl Challenge 2018
• This will benefit the Chris Draft Family Foundation/Team Draft
• If over $1000 is donated to my campaign, 50% of the donations will benefit the Lung Cancer Colorado Fund.
• Angel Flight West
• This organization is helping me arrange a free flight to California for my brain bypass surgery.
• Stanford Neurosurgery Department
• You can specify your donation be given to my surgeon, Dr. Gary Steinberg or to the Moyamoya Center to help in discovering the cause of this terrible disease and develop new treatments.
• LifeSpark Cancer Resources 

This organization has provided me with free reiki and healing touch sessions that's relieved me from physical pain and stress.

Now, on to my Thanksgiving Traditions.

As I'm posting this blog entry, I'm watching the Macy's Thanksgiving Day Parade. To attend in person is a bucket list item of mine.  I have the mac n cheese in the crockpot. Some of you know my "secret ingredient".  Since moving to Colorado, Thanksgiving weekend 1999, it seems more traditional to have Thanksgiving dinner with friends than family.  Jeremy and I will be joining friends for dinner today. For those of you that have opened your homes and set a place at your thanksgiving table for me,

THANK YOU!  

Two's Company. Three's a Crowd.

Just when my lung cancer and I were getting along and learning to coexist in the same body, there's something new in the mix.

I've been laying low and quiet lately because I was waiting on the confirmation of a possible new medical condition.

Last month I requested an early brain MRI, before my routine, annual, MRI date of October. I had some vision changes and other symptoms that sounded like possible lung cancer metastasis to the brain. I got the all clear. No cancer in my brain.

But what I did get was the news that they thought I could have a rare brain blood vessel disease called Moyamoya (moy-uh-moy-uh). In addition to the brain MRI, I needed an additional brain scan called an angiogram ct scan.

I got the results today. It's confirmed. I have Moyamoya.

Moyamoya disease is a rare, progressive cerebrovascular disorder caused by blocked arteries at the base of the brain in an area called the basal ganglia. The name “moyamoya” means “puff of smoke” in Japanese and describes the look of the tangle of tiny vessels formed to compensate for the blockage.

I am asymptomatic. I have no symptoms or signs of stroke or mini strokes. So, surgery is not my line of treatment at the moment. I will probably have to take a baby aspirin once a day because I am at risk of stroke.

My case will be presented at an upcoming neurovascular conference. It sounds like the neurology version of the lung cancer tumor board.

Not only am I a mutant because of my gene mutation driven lung cancer, I'm truly one in a million. Moyamoya is that rare. I will be doing some research regarding gene mutations and Moyamoya. If there a connection between my lung cancer and Moyamoya, I'll find it.

We don't know how long I've been living with this. It's even possible I was born with this disease. It hasn't caused any issues in the past. I'm hoping it doesn't cause any issues in the future.

What's in a Date?

August is a very momentous time for me. August 11, 2015 was the date I found out I have adenocarcinoma, non small cell lung cancer. Then I found out it was inoperable and incurable on August 14, 2015. This is the date I use as my Cancerversary date. Cancerversary~ the anniversary date of my lung cancer diagnosis.

Monday is my 2 Year Cancerversary. I really never thought I would still be alive today. The odds are against me, but I'm beating those odds every day, every hour.

I don't have too many not so amazing things to share over the last year. But the one thing is a fairly major concern. I was NED ( no evidence of disease) for approximayely 6 months. In October 2016 we started monitoring tumor growth activity in my upper right lung lobe. I had two blood biopsies to see if my cancer had developed a new mutation that is resistant to my current treatment. No information came back from the blood biopsies. I had a needle biopsy in May 2017. The biopsy was unable to collect a good sample and my lung clasped. A clasped lung equals my first overnight hospital stay.

I had radiation to this new tumor and I'm continuing with my current chemo pill/targeted therapy. Now we'll monitor this activity and see if the radiation did it's job.

One thing I must mention. We have lost many prominent people and advocates in the lung cancer online/social media community over the last year. These are people, putting themselves out there to educate, support and change the face of lung cancer. Every new death is a hard blow. They are missed terribly. I will continue advocating in their memory for much needed research to manage and end this terrible disease.

So many amazing things have happened to me since August 2016. These are just some highlights.

• I have my own beer! I was able to attend the keg tapping party in Dayton, OH for Lisa's Luck Amber Ale.
  
• I worked with the American Lung Association and participated in an award winning video to educate and spread  information about the importance of tumor testing.

• I shared my story at the Denver Lung Force Walk.
  
• I checked an item off my bucket list. I sewed my own dress and entered myself in a pinup contest. I was the first runner up and won prizes.
  
  

• I ran the Run the Rocks 5k and turned 46 in the same week.
  
• I participated in a Lilly Pharmaceutical advisory board and got to meet my lung cancer bff.
  

  
• I entered the Team Draft Lung Cancer Survivors Super Bowl Challenge...and I won a trip to Houston the week of Super Bowl and attended the Taste of the NFL.
  
• Thanks to Do It For The Love, I attended a Social Distortion concert in Denver, was given the VIP treatment and got to meet the band.
  
• Because I was a first time attendee, I was granted a full travel scholarship to Washington, D.C. to attend the Lungevity Hope Summit.

I can't wait to see what comes to me between now and August 2018. With your help I may be able to add Lungevity Hope Summit 2018 to next year's list. Please help me celebrate surviving another year with stage iv lung cancer and make a donation. If I reach my fundraising goal, I can qualify for a full travel scholarship, attend the summit and spend time with my long distance lung cancer friends.

CLICK HERE TO DONATE

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.

A Clinical Study and a Collapsed Lung

Twenty-one days ago I participated in a clinical study. At one point I thought a clinical study and/or trial meant you are a guinea pig and even though you were seriously or terminally ill you got the placebo (sugar pill) or the trial drug that may or may not work. That's not the case. There are many different types and stages of clinical trials.

To learn more about clinical studies, CLICK HERE.

The study I took part in was to improve blood biopsies. There was no medication to take or multiple trips to the doctor to be examined or monitored. I simply had to agree to submit some vials of blood.

Twenty-one days ago I remembered what it was like to have to go through a surgical biopsy. For me, that was traumatic (my first surgery) and painful with a three week recovery. I submitted a few vials of blood to improve a non-invasive procedure to diagnose lung cancer. I was all for that.

If you thought I was on board twenty-one days ago, I am now the head engineer on that train that can't go fast enough. This week I was scheduled for an outpatient lung biopsy procedure. In and out, they send the tissue to pathology for diagnosis and we know what we are dealing with. It's a common procedure, but there are certain risks that are discussed before you start. One of those risks, ever so slight, is a collapsed lung. For the biopsy procedure they are putting a needle into your lung to capture tissue. In a sense, they are puncturing your lung. In most cases, after the procedure, the lung closes on its own and heals up at the puncture site. Not in my case. My lung collapsed.

Lisa at University of Colorado Hospital with DC, her #hopebot

I was admitted into the hospital and had to have a chest tube put in place to help "re-inflate" my lung. Although, not as traumatic as my first surgery, it was my first overnight hospital stay, EVER! 

I can't wait for the day when a lung cancer biopsy will be a simple office visit and a blood draw only.

Please note: these are descriptions of my medical experiences, how I understand them, in my laymen's terms. The procedures mentioned and defined may not be 100% medically accurate/correct or my doctors words. Thank you.

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.

You Take the Good with the Better Than Bad

I had a pet scan and an appointment with my oncologist this week. The pet scan showed what appears to be more evidence of progression at my primary lung tumor spot in my upper right lobe. We've been monitoring this since October 2016.

Lisa Moran, April 19, 2017

The next steps will be two biopsies. Blood work has already been sent to Guardant for a liquid biopsy. Hopefully, something will show up on this test. It's my second Guardant biopsy. The first didn't show anything, not even my EGFR gene mutation. I will also do a needle tissue biopsy.

With the biopsies, we are looking for any newly acquired lung cancer mutations and we need to confirm it is lung cancer progression instead of delayed radiation scarring. If it's cancer, I will be adding radiation to my treatment plan.

The scarring is a possibility. But my blood work numbers have continued to increase, a sign of progression. Plus, my radiation oncologist office called to schedule my radiation consultation. If you ask me, that's kind of putting the cart before the horse to schedule a treatment consult before my biopsy.

My oncologist said this is a good report. My targeted therapy, chemo pill, is still working throughout my body. There are no new nodules or tumors. There is only this one location of possible progression. Radiation treatments should take care of it.

Several people have referred to this as a bump in the road. It feels more like a detour. Either way, I'll be able to get back on track.

What can make a setback appointment a little more acceptable? A visit to an art exhibit to see paintings and drawings from Monet, Renoir, Picasso, Degas, Matisse and others. Masterworks is currently on display, for free, on campus at my cancer center. I'm thankful for the opportunity to see these works of art in person.

One other good thing happened at my appointment. I was presented an opportunity to participate in a clinical research trial. I submitted blood samples to help research and improve the future of liquid biopsies. Hopefully, one day, because of my participation in this trial, invasive, surgical biopsies could be a thing of the past.

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.