Tuesday, March 12, 2019

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.

Thursday, February 21, 2019

I'm Winning the Fight

My latest article for lungcancer.net was written while the outcome of a late stage lung cancer diagnosis hit too close to home.

Over a span of just a few days, we lost two important people in our lives to lung cancer.  My boyfriend lost his aunt that treated him more like a son than a nephew and I lost one of my closest friends and lung cancer confidantes.

When someone dies of cancer the horrible cliche,  "lost their battle", is often used.  As these women were transitioning to hospice care and the afterworld, the only thing they were losing was their life on earth.  They won the battle.  With that,  they won the war.

Click the article photo below to read my latest article, "Beating Incurable Terminal Stage IV Lung Cancer". 

Wednesday, February 6, 2019

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.

Tuesday, January 15, 2019

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.

Wednesday, December 19, 2018

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. 

Saturday, December 8, 2018

Hellavu Year

One year ago, on December 8, 2017, I nearly died from a blood clot and hemorrhagic stroke. Some fast action, an emergency craniotomy and brain surgery saved my life.  

Last December I was in California with my boyfriend,  Jeremy, and my mom for my Moyamoya direct and indirect bypass brain surgery at Stanford University Hospital.   The plan was to have my surgery on December 5, spend two to three days in the hospital and then I would rest for a week with my mom in a rented apartment near Stanford University Hospital. After a week I would have a brain scan, a follow up exam with my neurosurgeon and be released to fly home.

That was the plan.  Sometimes you need a Plan B.  This is what really happened. Please note, I was groggy from surgery and pain meds.  So, this is my drug induced, stroke riddled, brain's way of recollecting the events that transpired.

The surgery was a success.  I spent a day and a half in the hospital after my surgery.  My vital signs and blood pressure were stable. I was released to rest at our rented apartment.  Jeremy drove us from the hospital to the apartment, stopping at a pharmacy to fill a pain medicine prescription along the way.  I was tired but awake enough to send a couple texts to check in with family and friends to let them know I was doing well and out of the hospital.  A day later, at the apartment, something went wrong.

I was doing and feeling fairly well considering I had a craniotomy and major brain surgery less than 72 hours before.  I was sitting up while drinking a smoothie for breakfast and talking with my mom in the living room. Jeremy was sleeping in a bedroom.   All of a sudden I felt a quick, sharp, stabbing pain in the right side of my head. It caused a knee jerk reaction to hold my hand to my head and wince in pain.  
I could see the panic on my mom's face.  I told her to calm down and it was nothing I hadn't felt before.  That was a half lie. There were a couple times I had felt sudden pains in my head prior to the surgery, but nothing this severe.  Then there was a second stab. It was even more painful than the first. I confessed the pain was nothing like before surgery. It wasn't like expected post brain surgery pain either.  We called the neuro surgeon to report the change in my status.

The pain continued and wasn't easing up.  It was moving around my skull and I could feel it behind my right eye.  I remember hearing a noise too. The sound of rushing water, wind shear or radio static between stations are the only ways to describe it. I lost track of my space and surroundings and I was feeling nauseous.

I asked Jeremy to help me to the bathroom.  This apartment bathroom was stark white. It had white paint, white tile, white fixtures with a white countertop and white vanity.  It even had white towels and a glass shower door. So no color whatsoever to break up the white in this room. Jeremy held my hands as he guided me through the short hallway between two double mirrored closet doors that led into the bathroom.  I remember screaming out that I couldn't see anything. I was super confused why I couldn't make out any objects in the room. All I saw was solid, bright, white around me. I was in a white tunnel

I've heard stories of seeing the white light before you die.  I wasn't moving toward that light. It wasn't in the distance.  I was inside that light. I couldn't see Jeremy infront of me or our reflection in the vanity mirror.  But I do know my body was physically standing in that stark white bathroom at that time.
I don't know who called 9-1-1.  But I do have this flash of a memory of EMTs asking me questions at the apartment.  I can't remember which room I was in when they arrived or when they were talking to me.  I don't remember going to the ambulance, the ride to the hospital or anything else from that day.

I was rushed to Stanford University Hospital.  I underwent emergency brain surgery to repair a brain bleed and evacuate a clot.  I was lucky to be alive. Most of the time, people do not survive a hemorrhagic stroke.  Whatever happened that day, from the apartment to the ambulance to the operating room, I can say,  I sure was at the right places at the right times. I can also say, I'm living proof that the power of prayer and positive thoughts can work miracles.

I was in the Stanford hospital for twelve days, pretty much unresponsive, before showing signs of improvement and being transferred to an acute rehab facility at Santa Clara Valley Medical Center.

When I arrived,  I could hardly respond when anyone came to my room to speak with me.  I had Left Side Neglect. It impaired my vision. I would lose sight of objects,  like my phone or a water pitcher if it was placed in front of me and off to my left side.  I couldn't feel or move anything on the left side of my body. I couldn't even wiggle my left toes.  Movement returned to my left arm first. I couldn't use my hand, but I could move my arm at my shoulder.

I eventually regained movement in my leg and foot.  There were days I was aware and alert and not curled up in a ball, asleep in the bed.  I started occupational, physical and speech therapies while at SCVMC. I walked out with a cane on my discharge date, which was a week earlier than projected by my rehab medical team.  It was also totally unexpected since a wheelchair was assigned to me prior to my discharge date change.

Last December I was sitting in that acute hospital bed in California, unable to walk,  trying desperately to find the Cleveland Browns game on my hospital tv. For some reason networks don't like to broadcast 0-14 teams outside of their geographical region.  This December I'm fully mobile, without a cane, and getting ready to see two Browns games in person, in one week! I'm still recovering and have many stroke deficits. Even with these negative issues, I don’t often say,  I suffered from a stroke. That's because I
SURVIVED a stroke!

Friday, November 30, 2018

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.