Changes Coming This #LCAM

Lisa Moran with Dr. David Carbone
Shirt available at diecancerdie.org
White ribbon info thewhiteribbonproject.org

 November is Lung Cancer Awareness Month.

We have been monitoring lung cancer progression in my lungs for several months.

When I switched my treatment from the Dayton oncologist to Ohio State in August, 2022, my OSU oncologist seemed surprised that I wasn't having breathing issues after seeing the latest scan results. 

At that time, I hadn't noticed a difference. Since then, things have changed. I don't have a wheeze. It's a faint intermittent whine or squeal. I have been losing my breath easier. I'm OK sitting still. But with any walking, exertion, light lifting or even talking I have shortness of breath.

My oncologist and I discussed the latest biopsy and possible next steps in treatment. He was very upfront and frank. I appreciate this in a doctor. I just want the facts, no matter how much I don't want to face the reality. 

The information from the biopsy was good news to hear. We know the cancer is still non-small cell adenocarcinoma. It has not mutated to small cell, a more aggressive form of lung cancer.

 He reviewed the possible next steps for my treatment. Bottom line is, I'm running desperately low on treatment options.

I have to wait another week for complete results from the biopsy.  If a new targetable mutation is found, we will add a targeted therapy to my treatment plan. If not, my PDL-1 (a protien) level is high enough now to get positive results from immunotherapy.

I will likely start pembrolizumab. The brand name is Keytruda. I will have to quit my current targeted therapy, Tagrisso. The two treatments do great alone,  but don't jive well together.

Immunotherapy is an infusion once every 3 weeks. It does have minimal, tolerable and treatable side effects. I will need to decide if I will get a chest port. It makes infusions easier. The last time I did iv infusion treatment,  my veins became very problematic. I got a port. That was great for 14 months. Then the port got infected. Something I'd rather not experience again.

When I was diagnosed in 2015, immunotherapy for EGFR patients like me wasn't even an option. Now it's my best possibility.

There is a clinical trial for a different immunotherapy for EGFR+ lung cancer. Because of my damaged kidneys, I don't qualify for that trial. Although,  my kidneys and creatinine have improved and are the best they have been in two years, it's not

 enough for a clinical trial.

As an outlier and long term stage 4 lung cancer survivor, I've been aware, for years, of the lack of FDA approved treatments after progression on Tagrisso. I've been somewhat mentally preparing for this moment. The truth is, facing my reality and morbility is quite sobering.

 But hey! I'm still in the game. Instead of having three or four treatment options, I have two. I may be running out of treatment options but I will never run out of HOPE.

PinUps & Downs

• It's been a crazy seven months. Well, it's been a crazy year. But I moved to Ohio seven months ago in the middle of a crazy year.

Some updates:

• I've managed to stay out of the hospital for four consecutive months. I continue to slowly gain energy and strength.

• Lung cancer is stable. I'm still on the daily oral targeted therapy treatment, Tagrisso. It's  controlling two out of the three mutations that drive my lung cancer. I think the 2021 iv chemotherapy took care of the third mutation. I've had no progression since.

• While the 2021 iv chemo controlled the cancer progression, it also did a number on my kidneys. My creatinine level started to rise following the chemo treatments. The theory was, after time, the kidneys would heal and bounce back. Unfortunately, the iv chemo killed my kidneys. They never recovered. I'm now in stage 5 of 5 stages of kidney failure. I will need to start dyalisis soon.
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• I've had two pinup photoshoots with Gem City Pinup Photography In Dayton. It's been fun and gives me something to look forward to. It also keeps me occupied while planning wardrobe, accessories and poses. Plus, it's fun to get dolled up and be Cookie DeMartini for a few hours. I'm looking for some local pinup contests to enter before I head to the Hot Rod Rock and Rumble Pinup Contest in Fountain, CO at the end of August, 2022.
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GO2 Foundation Virtual 5k Your Way 2020

June 20, 2020
Took Laynie on a #virtual5k today. #GO2SummerJam2020 #beatlungcancer #lcsm
#GO2Foundation #lungcancersurvivor #stage4lungcancer

Three Interviews and a Fundraiser

I've had several recent opportunities to share my lung cancer story and to advocate for more research funding.  It just happened that these three interviews were released so close together that I am sharing all with you in one post.

Team Draft Lung Cancer Survivors Super Bowl Challenge

I took the challenge this year.  I've been fundraising for Lung Cancer Colorado Fund to support the groundbreaking lung cancer research and treatment developments at the University of Colorado Lung Cancer program.  I earned the chance to go to the Pro Bowl to experience the events while I share my lung cancer story and advocate for awareness and lung cancer research funding.  Click HERE or the Pro Bowl logo to see a Team Draft video about my fundraiser.

 

You can help me reach my $50,000 fundraising goal .  Click HERE or the donate button to submit a tax deductible donation today. Donations can be made through Super Bowl Sunday, February 2, 2020. 

            

Living Lives with Lung Cancer website interview

LLwLC is a website focusing on lung cancer patients and survivors living and thriving in spite of their diagnosis.  I'm lucky enough to be one of the first to be interviewed.  I can't wait to see and read upcoming inspirational stories from fellow lung cancer patients. Click HERE or the zipline photo collage to read my interview.

https://livingliveswithlungcancer.com/meet-lisa-peace-lungs-happiness/

Cincinnati radio/podcast interview

Melissa and I recorded this interview in November 2019.  I think it was originally an hour and ten or twenty minutes long.  The Medical Apocalypse doesn't really have a Cliff's Notes version.  Melissa did a wonderful job editing that down for the show.  you can hear the interview HERE or click this video.

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.

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.

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. 

A Year in Review: Measuring Life in Events Not Dates

I've never been the type of person to remember exact dates of bad or traumatic events.  I know my father passed away in January when I was a child.  But i can't tell you the exact date.  It's the same thing with other family members and friends through the years. Sometimes i can remember what season it was with no memory of a particular month or day.  So, every year when winter rolls around,  i don't focus on the calendar.  January doesn't bring up old memories or sadness.  Sometimes,  i don't think of it at all.

That all changed after Lung Cancer and Moyamoya.  There are some dates I will now never forget and always will remember and celebrate.

 I will never forget the date, August 14, 2015.  I have remembered it and acknowledged this date every year since.

I can't tell you what day of the week it was.  I do know and remember well that it was a work day for Jeremy and me. We were at the tail end of the multitude of tests that i had undergone over the previous weeks.  August 14, 2015 was the results appointment for the final test, a PET Scan.

Up to this point, we only knew about one lung tumor in my upper right lung lobe.  This was the appointment we would find out how active the cancer was.  Being naive and having no first hand experience with cancer, I thought that meant if that tumor was a weak or strong tumor.  That sounds so funny to me now.  It goes to show how much we just didn't know at that point.  We had been focusing on the fact that I was a good candidate for surgery to remove the tumor.  We both thought this was the appointment we would be given a surgery date, recovery time and the info for any follow up chemotherapy or radiation treatments.   Jeremy and I went to work that day.  We broke away for a lunch meeting with my Memorial Hospital oncologist.  We were going to return to work after the appointment.

  This was the appointment we learned I was being diagnosed with STAGE 4  non small cell lung cancer.   My cancer had spread (metastasized) throughout both of my lungs and to my spine.  We heard the words, INOPERABLE, INCURABLE,  and TERMINAL.  We didn't return to work that day.

Why would I want to remember,  acknowledge and celebrate such a day?  I know some people that never talk of their diagnosis.  Some only refer to it as, "The C word".  To me it's almost like a birthday.  I don't remember being born,  but I still celebrate adding another candle to the cake every year.  I hate Lung Cancer and I wish I could forget it.  But you're going to find me every year celebrating my CANCERversary and the fact that I'm still surviving this inoperable, incurable, terminal disease.

Since my last CANCERversary I've had a few notable events take place.  It's been one helluva year!

• Diagnosed with an ultra rare brain disease, Moyamoya
• Brain surgery to treat Moyamoya.
• Survived a hemorrhagic stroke.
• Survived emergency brain surgery after my stroke
• Survived a coma
• Endured eight months of in-patient and out-patient Occupational,  Physical and Speech Therapies and now continue cognitive and executive thinking therapies on my own
• Traveled to Lungevity Hope Summit by myself
• Attended the Lung Cancer Alliance National Advocacy Summit in Washington, D.C. and participated in six meetings on Capitol Hill with Colorado members of congress.
• My Lung Cancer treatment quit working after 33 months
• I had Lung Cancer progression with lymph node activity
• Started my third FDA approved Lung Cancer targeted therapy treatment

They say the truth is stranger than fiction.  I wish I was making this stuff up.  Sometimes I can't believe everything that has happened to me over the last three years.  Then i see this recap of just my last year and realize it's incredible I'm here and able to blog and share my experiences.

Lung Cancer Patent Advocate, Yovana Maria Portillo with Lisa Moran at Capitol Hill

I think it's fair to say the Lung Cancer Alliance National Advocacy Summit made the biggest positive impact this last year.  Lung Cancer advocacy has been important to me since my 2015 diagnosis.  I've known and shared the awareness facts and grim statistics of how Lung Cancer is the number one cancer killer but receives the least amount of government funding.  Lung Cancer Alliance gave me the opportunity to change this, for myself and everyone else diagnosed with Lung Cancer in the United States, which could in turn effect Lung Cancer patients around the world.  Capitol Hill changed me and I changed Capitol Hill.  As a result of my July trip to Washington, D.C., Senator Michael Bennet of Colorado is now a co-sponsor of the Women and Lung Cancer Research and Preventive Services Act of 2018 (H.R.4897 or S.2358).  I keep referring to this as, "My bill".  I mean, in a way it IS my bill.  It effects my future treatments.  It could potentially aid in the discovery of the next EGFR drug to keep me alive.  It could end or lessen the stigma associated with Lung Cancer.  This squeaky wheel will not stop until Senator Gardner and Representative Lamborn are on board too.  Keep checking your inboxes, gentlemen.

This year my CANCERversary party is gong to be my first Shine a Light on Lung Cancer fundraising event.  It will be a combination of an online fundraising campaign and an August 18 party in Colorado Springs. CO, USA.  Donations will benefit the Lung Cancer Alliance. Please join me in this celebration by making a donation, whether in person or online.  No amount is too small.