Monday, February 26, 2018

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. 

Saturday, January 20, 2018

He Made This Place My Home

I left for California for my Moyamoya bypass surgery pre-op testing on November 29, 2017 
My surgery was on December 5, 2017. The surgery was a success, returning blood flow to my brain. But it was too much for my blood vessels, possibly weakened by my lung cancer treatments.

My hemorrhagic stroke was on December 9, 2017. I was transferred from Stanford University Hospital to the Santa Clara acute rehab facility on December 20, 2017. 
The original plan was to release me on January 11, 2018. I would need a 24 hour care nurse and a wheelchair.  

When i was in rehab, Jeremy and i knew what we had to do.

I had to work hard and gain my strength.

Jeremy had to prepare the house for my return. That would mean ripping out  the carpet, installing ramps, handrails and safety bars throughout the house.

  The wheelchair was never a consolation prize.

It was my ticket home to Colorado and back to Jeremy.

But something maraculous happened hile i was in California. I regained movement on my left side and I BEGAN TO WALK!!!!!!

I was released and returned to Colorado on January 3,much earier than the first proposed date.

I can't believe I've been home this long. My time and days are still running into each other. 
While I was in  California,  Iwould think about returning to Colorado and to my boyfriend, Jeremy. My best wishes and daydreams don't stack up to the reality of being here and in his arms.
Lyrics: Home by Phil Pillips.
This song was released when Jeremy and I started dating.
When I was admitted to Santa Clara I was very ill, recovering from two infections I contracted while at Stanford University Hospital. I was on antibiotics for both infections and all I did was curl up in a ball and sleep. I had no movement on my left side. I couldn't tell when the doctors touched my left leg or foot. I couldn't wiggle my left  toes or move my left  foot when they asked me to. 

Since my return, Ive enjoyed the new changes to the house.  But you don't know and I can't describe the feelings I have knowing why the carpet is gone and why we have hardwood. I left a house and I returned to our home. i returned to our new beginning. I returned to yhe rest of my life!

I Was supossed to return home in a wheelchair.  At the rehab facility, they ordered me a wheelchair.  It was placed in my room with an invoice stating this was my wheelchair for my return home.  There was a tag on thr chair, BREEZY, That's what I called it, Breezy. Breezy and i were in this together.  if my way back to Colorado and to Jeremy was in a wheelchair, that's how it would be.

I have a lot of hard work and rehab ahead of me.

Next week I start the first of many outpatient occupational and physical therapy sessions.
I have limited use of my left arm and hand with little to no sensation. My vision is impaired because of left side neglect.  I'm unable to drive.  I can walk inside the house unassisted. I can walk around the block, get to appointments and run errands with a cane if someone observes me and drives.

If I were to grade my current attention span and life skills, I'd be a combination of a10 year old boy the day after Halloween and Anna Nicole Smith during the time she filmed that reality show.

There are a couple of cosmetic things that need to be completed around the house too.  But if you ask me, it's prefect for my return home.

This Place IS My Home

I left Colorado on November 28 for my pre-op appointments at Stanford University in Palo Alrto, CA. My surgery was December 5. My stroke was on December 9. I was admitted to the Santa Clara Medical Center acute regard ehab on December 20. I was discharged from the acute rehab facility on Jan 3. I can't believe I've been home this long. Time and days still seem to be running together. For weeks, in CA, I would imagine what it would be like to be back with Jeremy and to be in our house, sleeping in my own bed. My best daydreams and wishes don't stack up to the reality of being here and being in his arms.

Saturday, December 30, 2017

A Place with no Space or Time

This will be as condensed as possible fipossible for my first  entry post stroke and I'm attempting to do this on my phone.
I optedfor the moyamoya bypass surgery to prevent probable stroke. The surgery was asuccessful in returning blood flow to my brain. But unfortunately, I did suffer a stroke just days after the surgery. What followed was emergency brain surgery to repair the bleed, two hospital stays, two infections, a coma, and ultimately, partial loss of the use of the left side of my body. I'mappy to report report that after a  21 day stay and acute physical, occupational and speech therapy, at Santa Clara Valley Medical Center in San Jose, CA, I'm able to walk, talk, make phone calls, and feed myself.

It's been incredible to have this happen and lose track of time and dates. We didn't even realize it was Christmas when it came and went. The original plan was bypass surgery on 12/9 with a 2-3 day hospital stay. I was going to fly home on 12/13.
Another way I lost track of time is the stroke took my ability to read a clock correctly. My brain is only processing the right side of the clock. It's a strange and confusing feeling to look at a clock and not know the time. This Is something you've done as a child. After ,40 some years, you look and you don't have to think. You just know the time. I've been working on retraining my brain to look at the clock
differently. It's getting easier. But it's actually a process to just look up at the clock and ,"know" what it says.

Thursday, November 23, 2017

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.
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,

Wednesday, November 15, 2017

Brain Disease and Being My Own Advocate

When I was diagnosed with the ultra rare brain disease, Moyamoya, I thought that it was a good thing to treat with baby aspirin.  But after thinking about that for a day, it actually meant, take baby aspirin and wait until I have a stroke before treating with surgery.  The more I thought about it the worse that idea sounded.  Wait until I have a potentially deadly neurological event?  Hell no!

My research for options lead me to the Stanford Moyamoya Center in California.  Dr. Gary Steinberg is an expert in his field and has performed over 1400 Moyamoya surgeries.  I sent my scans to Stanford for a second opinion.  It's a wonderful service.  The Stanford Moyamoya Center and Dr. Steinberg reviews scans and gives second opinions at no charge to the patient.  No insurance, no out of pocket.

This second opinion just confirmed my doubts I had with the Denver neurologist.  He just didn't have experience with and knowledge of Moyamoya.  My right interior carotid artery is 100% blocked.  I'm at a high risk of stroke, aneurysm, TIAs and/or seizures. Although, taking baby aspirin and waiting for any one or more of those things to happen is an option.  Surgery that can potentially keep me from ever having a traumatic neurological event is also an option.  Dr. Steinberg's approach to my case is, let's take care of the problem before there is a problem.  I'm so lucky to have this diagnosed before any serious problems.

Maybe it hasn't sunk in.  Maybe having 2 years of lung cancer under my belt has prepared me for another incurable disease.  It's just another bump in the road of life.
Clipart, not Lisa's actual brain
I started a Go Fund Me Campaign to help with all the added expenses that will go with brain surgery and recovery.  You can read more about my brain disease battle and donate by clicking  HERE.

Wednesday, September 27, 2017

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.