Not one of the 3 percent

Today is the day I have been anxiously waiting for.

The results were due back from the biopsy taken during surgery. Though there was a 97% chance that the papilloma were not cancerous, but until I could hear the words for myself, I haven't been able to sleep through the night.

The phone just rang.  It was the nurse.  It's not cancer.  Deep breath.  Smile.  Cry.  Smile.

I didn't say anything; not because I couldn't but because I couldn't.  The nurse said that she would have more information for Rachel when they spoke later this afternoon.

Smile.  I am not one of the 3%.



In lesser order but still of significance, is the cause of the papilloma.  This was caused by a virus, which was confirmed by the nurse.  All of my research shows that there is a potential for recurrence, but the nurse said that this is not necessarily the case.  When I have my follow up appointment in a few weeks I should be able to ask more questions, which will include what measures I can do prevent it from coming back.  For sure there were be daily medicine to suppressing the laryngopharynheal reflux and probably a few other measures.

Now three days into my quiet time, I am starting to figure out why not talking is so hard.  At first I just felt alone because I couldn't speak or tell anyone using words how I felt or what I was going through.  It really wasn't that I had anything significant to say, just that I couldn't say anything.  Then things seemed compounded because even as I had some small amounts of human interaction, the normal reaction of people when you don't talk to them (or can't talk), they don't talk back to you, which creates further isolation.  At night I have taken to writing down questions on the whiteboard just so I can hear Rachel talk to me.  I am sure that it is hard for her and others as when you have a conversation using words, there is a normal interaction and affirmation back and forth and when you can't talk, that doesn't exist.  A one way discussion isn't very much fun on either end but it's ok to talk to me.

Just a few more days now of silence and then I can do more than just nod and smile.

I wanted to express some gratitude to the many people who have sent me encouraging messages and offered to help.  I feel pretty guilty to warrant such sympathy when I feel fine... but I am extremely grateful for you just to have taken the time to write to me.  The most comical interaction was when Jimm Giles asked on Tuesday if he could get me anything and I responded with one word: "cheeseburger."  Probably not what he was expecting to read.

Responding to an email or a text message at this point is just as good as being able to answer the phone and say hello since I get to use my words and it makes me feel normal.

Yesterday was also a significant step forward toward normalcy as I was able to get on the (bike) trainer after work last night and sweat a little.  I kept the intensity light so that I was not breathing heavily and staying inside instead of riding on the roads was helpful as the wind had no opportunity to dry out my vocal cords.  Though cleared to run immediately, I have just been taking long walks until the drainage in my throat goes away as I shouldn't be clearing my throat as it will aggravate the surgical areas.

I was also able graduate from liquids and eat real food!  I had a mashed up pot pie for lunch and then had soft noodles for dinner.  Rachel brought home coffee cake which was like a little slice of Heaven.  There really is not a hard limitation on food other than my throat is still very sore and with my tongue still being numb, it is hard to swallow.  That is why pudding was my friend at first but now I am slowly moving onto more solids.  My taste buds are numb, so even the normal saltiness of the noodles was not there for me.  As things continue to improve, I hope to enjoy my first crunchy food soon!

It was because of your thoughts and prayers that I am not one of the 3%.  Thank you.

These are the times that try men's souls

"These are the times that try men's souls." - Thomas Paine

Normally I have an extremely positive demeanor, but I never realized that not being able to talk, and thus being deprived from basic human interaction, would create such an isolated and lonely feeling.

Just 48 hours post surgery, I am struggling with my sanity.  This is much harder than I anticipated.  I just want to say, something.  Anything.

Rachel and I have been getting along by using the whiteboard for impromptu thoughts and questions and a text to voice app on my iPhone when I really need to say something.  But is it not the same as just uttering simple words like "I love you," "good night," or "thank you."  The dogs respond to hand gestures that accompany the the normal voice commands.

Its not that I can't speak.  The images taken of my vocal cords after surgery indicate that the papilloma were completely removed.  So that means that if I were to speak, my vocal folds would come together (instead of letting air pass through) and I would produce audible tones.  It is just that I should not speak if I want the recovery to go as quickly as possible.  Speaking, and allowing the vocal cords to come together, will just irritate the situation and prolong the return to normal.  This is one recovery that I can't afford to rush.

My throat is still very sore, although I can swallow today without pain.  My tongue is still numb so I can't really taste anything.  The drainage in my throat is marginally less than yesterday.  Everything above and below my neck feel great:)

Oh and I how I miss food.  I long for something crunchy.  The triumphant return of cereal later this week will be a milestone in my recovery.

I appreciate how delicate life is and how precious something like your voice is and how it is not until you can't speak that realize how important it is to your daily life.  The moral of the story is to not take anything for granted in life.  I know that this is easier to type, than do.

I am hoping that a return to running tomorrow will help with the endorphins that I am clearly missing.

Being able to turn to my words has been a therapeutic way of expressing my thoughts, emotions and what I am going through, regardless if they go unread by anyone else.

Not just a cheap date

Yesterday I went under general anesthesia for the third time in my life, all of which have been in the last 9 months. 

This time it was to address the initial diagnosis from my ENT that I had polyps on my vocal cords.  2014 has been a very difficult year for us to say the least and when it rains, it pours.  From wisdom teeth removal to the disastrous water pipe breakage to Siri having surgery to the broken air conditioner to Rachel losing a close friend and then everything compounded with the stress of a knee that won't heal from surgery and the final semester of grad school for Rachel, it seems like we just can't catch a break.  Not that everything was negative; we did get engaged and had a great vacation in Seattle and San Diego to celebrate, but it still seems like the world is conspiring against us.  Luckily we still have each other, the dogs and of course family and good friends who pray for us.  As I told Rachel this morning, things could be so much worse for us.

At the hospital yesterday, I was admitted early and it wasn't long before I was visited by the RN, Laura.  She told me about the entire process for the day, including details on the procedure that Dr. Teachy would perform.  She reminded me a number of times that should would be there the entire time during the surgery and when they woke me up.  She referred to one of the medicines she was administering as providing an similar effect of a tall margarita, but only gave me half a dose at first because some people are cheap dates.  Though I wasn't in the mood to laugh, her joke brought up my spirits when she had to give me the full dosage into my bloodstream and I still didn't feel anything.

There was a brief time before the anesthesiologist came in so I took the opportunity to pray a little and even dozed off.  When she arrived, we talked a bit about my vital signs.  My heart rate was 51 and I remarked that it was a little high today.  She then told me a lengthy story about once when she thought she had mercury poisoning and it caused her heart rate to drop very low.  Though she was weary scrubs, I imagine that based on her personality if I saw her in public, she would be wearing a flowery dress and Tevas, to say that she seemed like a free spirit.  

Dr. Teachy came to visit and further explained the procedure.  As with the first interaction I had with him, he was very brief and to the point.  I had to ask several questions that I felt were important that he did not initially cover.  My biggest concern was the cause and the probability of recurrence.  As I previously wrote, most of what I know about this condition was found on Google with very little coming from the Doctor himself.  His bedside manner in educating me was very poor at best.

The official diagnosis was that I was suffering from laryngeal papillomas on both vocal folds. This was much different than the initial analysis that I had vocal cord polyps. Papillomas are technically growths (termed neoplasms) which may be benign, pre-cancerous (termed dysplasia) or cancerous (termed malignant).  The majority of papillomas are benign but very rare, impacting less than 2 adults per 100,000 in the United States.  The probability that they may be cancerous is between 3-5% and will be determined through biopsy with results known on Thursday.  One of the most common causes other than by virus, is laryngopharynheal reflux (LPR) which I have a family history of on my mother's side.  It was good that this was diagnosed early, as laryngeal papillomas has no cure and may return at some point in my life.  Dr. Teachy did say that this is known to affect some long distance runners as they chronically have a suppressed immune system.  Some people will require multiple surgeries throughout their life to deal with this and for some it may stay in remission forever.  The surgery would involve a laser targeting the blood supply of each papilloma.  This is a very delicate procedure to limit the vocal cord scarring which may lead to permanent hoarseness.  

Finally I was brought into the operating room where there seemed to be a lot of activity.  I was relaxed and kept telling myself that despite the severity of my condition, this was a routine operation for these experts in their field.  I was wrapped up tightly with blankets that were bound to me with velcro, making me feel like a mummy.  I was very alert of my surroundings even several minutes into the anesthesia before ultimately falling asleep.  

I don't remember when I woke up but the first thing I did was ask if my nurse was there.  I don't know why I did this; maybe because she was the last person I saw before I zonked out and that she had said that she would be there the entire time.  Someone said that they called Rachel and she would be waiting for me in the recovery room.  The time lapse between that point and seeing Rachel may have been a few minutes or it may have been an hour, though I speculate that it was somewhere in between.  Rachel said that she tried to ask questions about the procedure and recovery to the doctor, but he was just as short with her as he was with me.  I don't know for sure but I feel like they were rushing to get me out of there.  

As compared to waking up from my knee surgery in February, this time felt much worse.  I was extremely groggy; like they woke me up too early and I was still under the heavy effects of the anesthesia.  I couldn't sit up or lift my arms, so Rachel had to help me get dressed.  I was fully alert but just had no ability to move.  It was very creepy, like being paralyzed.  I was put into a wheelchair to brought outside, where Rachel was parked right up front.  I had my eyes closed the entire time and felt my head bobbing, but I knew every turn, every stop sign and every lane change from driving this route hundreds of times since I have lived here.

I was able to get out of the car and walk inside with some help from Rachel.  We went straight to the bedroom where I laid down and was greeted by two licky beagles.  For the next few hours I would rotate between being fully awake and trying to remember all of the details from the day to being half asleep.  My tongue and throat were still numb, so I could not swallow at all.  Combined with the recommendation that I can not clear my throat, made it very difficult to breathe with the mucus build up in the back of my throat.  It sounds gross but I eventually found a good angle where it would just drain down the back of my throat if I had my mouth open just right.  Rachel brought in some pain meds and antibiotics that I choked down with some Gatorade.  I really did feel much more lucid than after my knee surgery and numerous times I encouraged Rachel to go to her two grad school classes.  She was adamant about staying home with me and I joked that she would just be watching me watch Netflix.  

Going from a 5,000 calorie per day diet down to zero is not easy.  I was very hungry and when Rachel came back from the grocery store with Jello and pudding, I was jealous of her eating Hardees.  I wanted a cheeseburger.  I finally got up around 6pm and ate some pudding which hit the spot.  I had good intentions of writing this blog last night, but I just didn't feel much like typing.  So while Rachel did homework, I laid on the couch with Siri and Fiina.  We watched a great show on the Food Network claiming that hamburgers were the perfect food.  It wasn't helping my growling stomach.  It felt good to lay upright so the fluid would continue to drain downward, so even as I fell asleep, I stayed on the couch for a couple of hours.  

Overnight and into this morning have not been that pleasant.  I still can't swallow very well and am very hungry but it hurts to eat anything.  I have been trying to drink as much Gatorade as I can to stay hydrated.  I woke up numerous times with my stomach growling and also with numbness in my left hand.  I took off one of the medical arm bands that may have been on too tight.

So onto the recovery mode... 7-10 days of absolute restricted talking.  I honestly haven't even tried as I am a little afraid about how it will feel.  After that, I can begin talking for 5 minutes per hour for the following week.  Then beyond that I will add more and more talking each week until about the 8-week mark in which I will be back to normal.  The doctor said that I could run right away if I wanted to; something that made all of this misery not seem so bad.  I will probably just rest, walk or ride the trainer for a few days or until my sore throat goes away.  I don't know how it will feel with intense breathing of a running workout on a sore throat.

So the immediate concerns will be addressed in two days when I find out the results of the biopsy.  The papilloma did not look cancerous and 97% of the time they aren't, but I won't feel better until I hear the positive results.  Beyond that, it will be regular checkups to make sure that they have not returned.  I really don't want to ever go through this again.

Managing Frustration

I am trying to remain positive and patient.

The best way to describe the interaction that I have had with the medical profession is like dealing with the keystone cops.  In other words, it feels like I am being routed from doctor to doctor, from building to building, from department to department and no one is privy to any information on the previous interaction.  There are delays in scheduling, phone calls not turned and questions are left unanswered.  I don't feel this is a reflection on all medical professionals, but right now I feel like given the current situation, I am being given the run around and kept in the dark.

Today I put a stop to all of it.  Here is what I mean.

I began to experience hoarseness on August 27.  I didn't want to rush to see my family doctor immediately for something that was really nothing, so I gave it two weeks.  Unfortunately, I had a 3 week work trip to New Zealand after that two weeks, so by the time of my initial visit to my family Doctor, I had been symptomatic for 5 weeks.  This is no one's fault and I am not complaining.

After seeing my family doctor, it was a 3 week wait in order to see Dr. Teachy at North Alabama ENT.  I have no problem using actual names.  He is well known within the Huntsville ENT community and came highly recommended.  So when I first met with Dr. Teachy, I had been experiencing hoarseness for 8 weeks.  The procedure involved putting a scope through my nose so that he could  examine my vocal cords.  The initial diagnosis was that I had 4 polyps on my vocal folds.  Dr. Teachy then indicated that the next step was to get imagery on the vocal cords to determine the actual severity.  I assumed that I would get to ask more questions, but he said there was a chance they could be cancerous, that surgery was required and then he went to see about scheduling.  He personally did not come back so I was left in the dark with my questions.  In the mean time, my ability to speak had diminished greatly, such that it was a strain to even whisper.  I went home and Googled frantically everything I could on vocal cord polyps, surgery, recovery, etc.

The next appointment was at the same facility, a week later, and with a different person.  I am not certain if they were an official doctor or a medical technician, but she conducted the imagery analysis of my vocal cords.  She was helpful and answered many of my questions, but also gave me what turned out to be false information.  She indicated that because of the severity, that they may prefer two separate surgeries, allowing for one side to heal prior to working on the other side.  I would later find out that the doctor would never perform this procedure at two separate times, but in the mean time, I am again left frantic on thinking that I may have to live through this recovery twice.

As I left that appointment, the surgery scheduler indicated that they could not get me into surgery before mid November,  I politely explained why this was unacceptable and she indicated that she would call me back.

The following day after that visit, I had to call back myself because I had not received a call from the scheduler.  I spoke with Dr. Teachy's nurse and the surgery scheduler.  They were now offering early November.  With a crackling voice with nearly zero audible tone, I asked if that was the earliest possible.  I waited patiently for the rest of the day waiting to see if there was anything that they could do.  There was no call back.

The day after that, I called back again to the surgery scheduler.  Now miraculously they had an opening on Monday, November 27.   Finally.  I accepted the appointment.

My frustration reached a new level in the whole process at this point because even though I have been to see the Doctor, a technician, a nurse and talked to a scheduler, no one had actually consulted with me on the recovery phase.  I hate to shout and use all caps, BUT YOU ARE ABOUT TO OPERATE ON MY VOCAL CORDS AND THE ONLY THING I KNOW ABOUT THE POST SURGICAL RECOVERY IS WHAT I HAVE READ ON GOOGLE.

So I called back in today and politely asked to speak with Dr. Teachy's nurse.  I indicated to the receptionist, that if I was not able to have a verbal conversation about the recovery before having the actual surgery, that there was not going to be an actual surgery.  How am I supposed to explain to Rachel (my fiance) what care I need, or to my employer how much time I will need without speaking, if I can't actually speak to tell them.  Yes I have gotten accustomed to typing things and making hand written notes, but there is no way I am going to have surgery on something so vital as my vocal cords without understanding the details.

So while my surgery is scheduled, until I hear from the nurse, I would not consider my attendance on Monday as confirmed.  Call me any name you want, but I want to understand how the surgery will be performed, the plan for recovery, the frequency of checkups and have confidence that I am getting the same factual information from everyone involved in the process.  I honestly don't have much confidence right now, knowing how I have been routed from person to person without any consistency (or complete lack thereof) of information about what is about to take place.

I feel like I am in the same room with people and they are talking about me and never to me.  Just because you perform this surgery ten times a week doesn't mean that I should be left in the dark for something that they determine is routine.  It is surgery.  There will be prolonged recovery (well from what I read on Google).  It is serious and I want to understand before I commit.

I did finally get a call back from the Doctor's nurse and was able to ask all of my questions.  It was a small victory.

Staying Positive

It is not difficult to figure out when your doctor is concerned simply by the way they ask their questions.

"So how long have you been hoarse?"

"This has never caused you any trouble before?"

"You can take a picture of this but you might not want to share it with your fiance since it might frighten her."

"I am surprised that you can talk at all."

"I don't know how you are able to run so fast with how much water (or lack of) that you drink."

This morning was my follow up visit with the ENT specialist to take pictures and video of my vocal cords.  The purpose was to assess the situation and develop a plan for surgery and recovery.  In other words, they needed to "see" how bad things really were.  The procedure started with a discussion so I knew what to expect and then they numbed my throat so I wouldn't gag.  The Doctor then held my tongue while playing a camera at the back of my throat.  There was a light shining down my throat that captured the imagery.  We went through several exercises where I made different sounds so she could see how my vocal cords were working (or not working in this case.)  Then we looked at the playback and compared my vocal folds to both normal vocal folds and to those that have a variety of conditions, which included cancerous cells of smokers.

I am going to try to focus on the positives of this visit and treat the negatives as just facts of life.

• I don't have 4 polyps on my vocal cords as was initially diagnosed.  I have seven.
• When you speak, your vocal cords should come together.  My right vocal cord is not moving at all. 
• There is one polyp that is at the base where the folds come together that is the worst. 
• Generally the polyps do not look to be cancerous.
• I may have to undergo two separate surgeries so they can repair one side at a time and allow healing in between.  They may be a month apart, which would prolong the recovery of my voice.

Because it actually makes me a little sick to my stomach to think about these images, I have just linked to them and not included them within the text.  If you really want to see what healthy vocal cords look like and what mine look like, you are on your own.

I asked that the Doctor just be honest with me and to stop asking leading questions.  If you are concerned, then say that you are concerned.  Don't hide anything or make transparent statements.

My primary concern is to be able to speak normally again.  For now the prognosis was that after surgery and voice rehabilitation, this is possible.  Rejoice.  That means in time, I will return to a normal quality of life.  Knowing this, I then move down the list of importance.  I was able to ask a lot of questions about recovery both in terms of work and running as secondary concerns.

Running

• Initially I was worried that I would have to take weeks to months off of running based on research.  The Doctor indicated that only activities that strain the vocal cords, like weight lifting, need to be avoided.  When running (or other high intensity cardio workouts) the vocal cords actually relax to allow air passage and do not come together.  The Doctor said that I could run the next day if I felt up to it.  I almost peed my pants in excitement.  I said that my coach would be very happy to hear this!  

Working

• As thought, the first week post surgery will involve no talking whatsoever.   The second week may be a few sentences throughout the day, limiting the amount that I speak.  Then there will be a plan moving forward to increase the amount I can speak to the point where after 6-8 weeks I should be back to normal.  That said, during intense speaking circumstances (like 8 hours a day for 3+ days that I would normally perform during a work conference) there may need to be an approach of speaking for 30 minutes, then hydrating and resting for 30 minutes.  Knowing that I may require multiple surgeries to repair my vocal folds, returning to my normal speaking regiment at work may be further down the road than initially planned.

While the cause is still unknown, they suspect that the development of the polyps is due to a combination of factors.  The leading factor is a gastroesophageal reflux, which is a hereditary issue for me.  There are additional factors that make that worse, which include poor hydration and eating late at night (and then laying flat where the acid has a chance to creep up into the throat and irritate the vocal cords).

The immediate action items are to address the potential causes.  This includes proper hydration, not eating so late at night (or as close to bed time), putting the head end of the bed on small risers to create an incline (which keeps the acid down).  

The confusing part of this whole ordeal is when the actual surgery will be.  I think that the next step is that I have ANOTHER visit with the Doctor (who will perform the surgery) to develop a plan.  I had thought that the surgery would  be next week.  Based on availability, they wanted to schedule the next consultation for November 6.  That is two weeks away.  Luckily the Doctor from today indicated to the scheduler that it had to happen before then.  So I am waiting on a call to find out when the next appointment will be.  She did mention that there will be LOTS of appointments, consultations, check ups, etc throughout the process.  

So the good news for today is that the polyps don't look cancerous, it should not impact running and I will return to the same quality of life after surgery and recovery.  Let's focus on that for now and take things one step at a time.

I fear not

After much prayer, I decided not to keep this a secret.  Writing has always helped me process the most difficult situations.

"Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God is with you wherever you go." Joshua 1:9

Back in August, I lost my voice during a presentation with a customer.  I attributed it to a heavy speaking regimen at work where I was delivering presentations at a higher frequency than normal.  My throat was very hoarse, but I had no other symptoms to speak of.  The situation was made worse when I went on a business trip to New Zealand for work and was speaking in a different city every day over a two week period.  Each morning my voice would start scratchy and by the end of the day, it would be non-existent.

When I got back home, I went to see m family physician, Dr. Krichev.  He referred me to Dr. Teachy, an ENT in Huntsville, but there was a 3 week period before my appointment.  I tried to use my voice sparingly, hoping that my vocal cords were simply strained and would recover on their own with some rest.

I tried to remain positive and hope for the best case scenario.

At my visit today, I was diagnosed with multiple vocal cord polyps that will require surgery to remove. They are probably caused by gastroesophageal reflux and a lifetime of overuse.  They have been building for a long time and finally just got bad enough to impact my speech.  The doctor indicated that they are most likely not cancerous, but will not know until they are removed and a biopsy is performed.

Deep breath.  Remain calm.  Then I almost cried in the Doctor's office.  I am afraid for the worst.

I asked a million questions ranging from what to expect to the success rate to the doctor's history performing this surgery.  While it may seem routine and minor, when he used the "C" word, my anxiety level reached an all time high.

This isn't a simple procedure to remove the torn meniscus in my knee after falling during Mountain Mist.  My voice is my life; it is my profession.  I am an engineer, but not great with numbers so I have built a career around professional speaking.  I enjoy more than anything to talk with people; about running, about life, about travel, about everything.

My voice is everything to me.

Deep breath.  Take things day by day. Only worry about the things that you can control and trust that God has a plan for the rest.

Recovery will be extensive and include a period of not talking for the first week, then just a few words during the second week.  Beyond that, there will be an extended period of limited speech which may last through the end of the year.  Post-surgical voice therapy typically will be involved to encourage healing, improve vocal quality, and prevent future polyps from occurring.  No coughing or throat clearing.  Exercise is still up in the air as to when that can begin after surgery.

Deep breath.  I can do this.  I came back from knee surgery and after just six weeks was able to win McKay Hollow Madness 25km.

So now begins the waiting period before surgery, which will be in two weeks.

I am very fortunate to be surrounded by some amazing people who have been and will continue to be supportive.  Family, friends, Rachel, Siri, Fiina, Lyla.  Your encouraging words have not fallen on deaf ears but have strengthen my resolve.

This could be worse.  This can still be worse.  This will not be worse.  I am strong.  My God will be with me wherever I go.  I fear not.

I will  overcome this minor obstacle just like every other challenge that has been presented before me; head on with voracity.

"Though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me;" - Psalm 23:4