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.