Being a patient is hard work…..

I’m tired.  There, I said it.  I am not strong.  I am not tenacious.  I am not some super-human that is out in this world over-achieving as life throws more health lemons my way.  I am tired.  I am just a good actor to the outside world.  I have a feeling this resonates with anyone dealing with a chronic illness…..especially one that requires a seemingly never-ending relationship with operating rooms, various tests..all of it.  Before I began to blog, I honestly didn’t talk about it much.  I was like the ostrich who just put her head in the sand and went through life ignoring it as much as I could.  I suppose I still do to some extent, but realizing I have this huge family sharing this walk has given feet to my words.  So, today, it’s going to be a little chat about how being a patient is well, hard work.

In a perfect world,I, the patient, would walk into the exam room fully confident that the doctor would be well-educated, well-trained, and have a patient load that would indicate that my life is in good hands.  When you  have  a rare, chronic condition…even the experts aren’t always experts.  So, you walk in armed with years of paperwork, scans, research….you take on the role of the “most educated” and the only person in the entire world that has your best interest at heart. For lack of a better way to say it, it just stinks.  Yet, it’s the life you have…and you live it.

You sit in your car as you drive back home wondering if it’s too late to get that medical degree.  Wondering where the zeal for new ideas, research, outside-the-box thinking is lost as a doctor gets years of practice under their belt.  When do doctors stop being the dreamers of all that is possible and become so inward focused that even the remote possibility they could be wrong..or maybe not know something is unspeakable?  And if you doubt or question, somehow it’s that you have an anxiety issue….anxiety in that I don’t want to die…sure.  If that’s what we are calling it today.

In some ways, life with a rare chronic condition was easier before the ability to “know more.”  You went in, whatever was said or suggested-well, that was it.  Wrong, right, dangerous, safe…..didn’t matter….because only doctors had the information and you only had the information that they were willing to share.  We don’t live in that world anymore.  We are told that we, the patient, drives our healthcare…but we really don’t.  We can have all the research in the world….and you still can hit the brick wall of “I’m the doctor, I know all….this is rubbish.”  My favorite right now is, “this is such a rare condition, unfortunately we lack the expertise in caring for this.  Best wishes. ”  I appreciate the honesty, as I’ve had doctors treat me that well….in hindsight…should not have.  Yet…still.

It is estimated there are about 20,000 cases of RRP in the US and maybe up to 17% (huge unknown here due to the little research in pulmonary spread)  of those go to pulmonary involvement and then estimates of 1% of those will convert to squamous cell carcinoma. Pulmonary RRP acts like cancer in so many ways, even if the tissue remains benign.  There is no cure….none.  The Gardasil vaccine series shows promise in that if we can achieve mass vaccination rates, we could reduce or possibly even eliminate future RRP cases…yet even that is tied into politics, fear medicine and somehow attached to morality.  (Getting a vaccine does not make you sexually active….that’s just silly.)  This is the life I live….the life God walks me through…..the life that sometimes has me paralyzed with fear and anxiety over all the “what ifs” on testing, treatment…..the life that causes me to doubt those that are to be trusted with my care….

So, I am not strong…I’m tired…but life is to be lived and sitting is not an option.  I wonder just how many of us with a serious, chronic condition feel the same way…..but each day wake up and put on our mask.  Do you?

John 14:27  Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.

Two roads diverging…and neither road has a map.

Robert Frost penned the iconic, “The Road Not Taken”, where he wrote about how taking the road less traveled made all the difference.  What about when you are standing at the point in the road where you have two options and taking the less traveled road could mean your life and the most traveled road could mean your life?  Mr. Frost, what then?

(A huge shout-out to Mrs. Evelyn Sims for what knowledge I do have regarding literary works.  I am confident I was the student she wished would opt out….but I am daily reminded of her in vocabulary words I recall or in a literary work that is cemented way back in the back of my brain that suddenly reveals itself. Creative Writing….aka…the room with painted blocks.)  I am off track now….

I stand at a crossroads.  Two medical options, for one medical issue.  Both of them so far apart, that it’s like comparing apples to oranges times a thousand.  One option seems easier, but comes with some hefty side effects and no concrete evidence it even works on the majority of the population. And if it fails, the second phase of the less evasive plan is less appealing than the first.  The second option could open pandoras box, but it is the option most used.  Yet, does most used make it the right choice?  Or is that what’s used because there isn’t enough data on the other options?

What would Mr. Frost have advised when there was no confidence in either road?  No confidence in any of the “guides” that would be on the road?  Would he have told me that my fear was eroding the confidence that should be there?  Would he have written a line about the over-analyzation of the two roads? The “guides” are some of the best in their field, shouldn’t I trust their wisdom?  Yet…I sit here needing a consensus.  I need clarity.  I need the two roads to turn on their street lights.  I need to see what’s at the end of each road.

So, today I sit.  I sit on the stump, at the juncture of two roads.   A decision has to be made soon.

(Today, I sit here as a girl that has learned she has pulmonary involvement from her recurrent respiratory papilloma.  I sit here grateful for God’s protection while we sorted out what showed up in October’s CT.  I sit on my stump.  I have places to go, people to see, and dreams to watch unfold.  This…I don’t have time for this….and today, I’m going to leave my stump and prepare for my nephew’s wedding and a trip to the beach.  This…this will wait.)

Life's decisions would be so much easier if we could see the end of the road.

Life’s decisions would be so much easier if we could see the end of the road.

Morgan’s Story-Determination and Hope-You Are More!

Today’s “Fantastic Friday” RRP story is a feature on Morgan Toll.  I feel such a special connection to Morgan as we are both from the same area, have a story that really isn’t that far apart, and I know pieces of her family….she’s special and I hope you enjoy her story.  This is Morgan in her own words and I am so thankful she agreed to be the first story!  She’s amazing and it shines through! 

Little Morgan

Little Morgan

I was eight months old when I was diagnosed with RRP, from then on, until I was around 12
years old, I had over 200 surgeries. The doctors said I had one of the worst cases they
had ever seen, having to go into have surgery every week, as if it were routine. I was young
and because I had grown up this way, it was all I ever knew. I never saw my illness as a
tragedy; I saw it as my life because I never knew anything different. So brave

I’ve heard stories from my parents about how I would pass out, turn blue, and have to be
rushed in an ambulance for immediate surgery, or how the hospital once didn’t have the laser
to remove the papillomas, so I was put in an induced coma for a week to stay alive. Now
when I hear those things, it tears me apart because I can not even imagine how my parents
must have felt, feeling like they were losing their baby girl to this awful disease. I can tell
you that I remember the grape smell of the mask right before surgery, the toy room, and my
anesthesiologist that would perform magic tricks to calm me down. I remember my mom
and dad crushing up the Popsicle for me after surgery so I could eat it. I remember them
crying right before I was being pushed down long hallways as I spoke to my doctors, and
then, everything going fuzzy right before I fell asleep. When I was six, I went in for a check
up and they said I would go into cardiac arrest because not enough oxygen was getting to my
heart. I had to have an immediate trach put in. I remember them bringing in a puppet to
explain my surgery, but I didn’t really understand. Afterwords, I stayed in the hospital which
seemed like forever.

Beautiful Morgan
The trach, for me, is what set me apart and made me start realizing things were different. I
wasn’t allowed to do certain things that I used to be able to do, like going swimming or
taking showers, or playing in the sand. Every night I was hooked up to multiple upon
multiple machines. I remember it scared a few of my friends, and they didn’t really want to
sleep over anymore. I knew I was different and I didn’t want it anymore.
When I was ten, I saw a doctor in Colorado that began to change everything for me. He
started injecting the mumps virus into the papillomas which began making them disappear. I
also I had a rib graft done, where they took a piece of my rib and put it in my throat to
reconstruct the airway.
Soon after, the trach finally came out.
It was a miracle. I, one of the worst cases the doctors had ever seen, was being put into
remission. I could finally be a “normal” kid.
Even though the disease had disappeared from my life, it seemed to follow me.
My voice became the only concern in my life.
The constant questions and people thinking that I was sick became so ordinary but
the number one thing it has held me back from, is the one thing I love most, acting.
From the time I was small, I knew in my heart that being on stage was all I ever wanted to
be. Which is really ironic, given the circumstances I was in, so of course, everyone always
told me that it was not possible. In highschool, I felt like I had given up hope; I started to
believe everyone around me and believed that I couldn’t do it. So I pretended that it didn’t
bother me, that I never wanted to act, that I wanted to be behind the scenes. Her Dream
I watched as people around me got parts, didn’t memorize their lines and fooled around. I
stayed behind the scenes, watching as others did what I wanted to do most of all. Then when
I went to college, I took an acting class which was required.
We were all paired into two and had to do a scene. Mine was a scene from the play “The
1
Beautiful People” and it was dramatic and beautiful, but I was terrified. I didnt want to act in
front of anyone, I didn’t want people to make fun of my voice.
Once I had performed the scene though, I was hooked again. I knew I couldn’t give this up,
not anymore. I became a part of an acting group in the school, and began performing in play
after play, and taking as many classes as I could, working as hard as I could, wanting to learn
as much as possible about this wonderful craft that I love.
People were still telling me that I couldnt do it, telling me the only characters I could play
were sick ones, but I stayed strong and refused to listen.
I didn’t let this disease I once had take control of me again.
In my third year in college, I auditioned for the play “Fools” and I got the lead. It was the
first time I felt like I was getting the chance to prove that I could do this. Not just to people,
but to myself. Members of the acting group tried to kick me out of the play, they said I
couldn’t be the lead because no one would hear me, I fought back again and even more.
The first night of the play, in this small theater, the audience was packed. People were sitting
on the stairs and some had to be sent away, it was crazy. I was so nervous, but felt this
energy inside me that bursted out and led me throughout the performance.
When it was over, everyone began to applaud and stand up. My eyes started tearing up. I did
it, I stayed strong and proved that I can do this, and it was amazing.
Nobody could understand how much this silly play meant to me, and I would hold onto that
feeling for the rest of my life.
Then, last year, things started to change again. I started feeling shortness of breath and my
voice was getting weaker than usual.

Life Changes
I went in to see a doctor and wondered if there was any way I could get my voice fixed, after
being in remission for so long.
The doctor told me that my airway was narrow, the size of a three year olds, and that there
was no way to ever fix my voice. That I would never speak normally again.
It was a lot to take in. It was a hope I had in the back of my mind that very quickly started to
crumble.
I started seeing more doctors because of my airway. No one understood how it was getting
more narrow all of a sudden. The scar tissue, due to all the surgeries I had, was somehow
beginning to grow. I worried about having surgery, worried the papillomas would come
back if it was messed with, worried I would lose my voice all together.
I started going to the emergency room because I was feeling more shortness of breath. Soon
after, I decided to go to a doctor in Boston who chose to remove part of my vocal cord and
open my airway more. The surgery had successful results, but it did not last very long. After
I flew back to California, the scar tissue grew back, making my airway even smaller than it
was before. I became ill with pneumonia and spent three days in the ICU and on the fourth
day, I had to fly back to Boston to have another surgery. My breathing was getting worse and
worse; just getting up out of bed or walking across the room would cause me to be
completely out of breath.
Two months after my surgery in Boston, I went in for a check up at Johns Hopkins in
Baltimore and they told me I would have to have an immediate awake tracheotomy and I
would not be permitted to leave the hospital without one.

And It Was Done
My whole world seemed to shatter in that moment. I was so scared, it was happening so fast
and I felt so alone. I couldn’t believe this was happening all over again and I didn’t
understand why, yet I knew it had to be done. Today I still have the trach, and my doctors are trying to figure a way for it to be removed eventually. I currently have zero vocal cords but I still have my raspy voice.

Despite all that though, I am okay. I am actually more okay now than I ever have been. I can
breathe, and let me tell you, people can really take advantage of the whole breathing thing
because you don’t know how amazing it feels to breathe that very first deep breath for the
first time after not being able to breathe at all.
I have come to terms with my illness.
I know that it is all in God’s plan and no matter what happens, it will all be ok.
A lot of people might think that I am weaker because of all of this, but i feel so strong.

I am strong because I’ve spent my whole life battling this,
I am strong because I refuse to let someone tell me that I am less than because of it,
I am strong because I refuse to give up,
I am strong because every single day I am so thankful to be alive and breathing.
I am strong because I have God in my life, right beside me everyday, telling me that it’s
going to be okay.
I of course have my days where my heart breaks a little because of the things this illness still
holds me back from, knowing I may never be on that stage again. But what keeps me
together is that strength, the strength that tells me that no matter what, I am never going to
give up.
That’s what I try and share with everyone. I want everyone out there to know, anyone with a
disability, an illness, or a feeling like you are less than, I want you to know that you are more
than you could ever imagine. You are more.

A Woman of Determination

Normal is Boring!