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.

Saturday, August 12, 2017

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.