Updates and trouble swallowing still =(

So its been a few days and sadly family had to return home... I will say thank God for my family!  This is one of the hardest and most scary things I have ever done and to have my mom and aunt here really did help me get through the first few days.  I cant imagine how hard it is for them to watch me go through this and especially so young.  They also have a lot going on in their lives and have made sacrifices to be here and support me.  I feel terrible that not only did this happen but that it affects so many people around me.  I used to call my mom and aunt daily and now im forbidden to be on a phone.  I get yelled at all the time for talking but really how do you just stop.  And even when i do you have to be close to me to even hear me LOL... I ve been a motor mouth my whole life... since i was 2... I was loud and obnoxious my whole life.... i project other peoples words when no one can hear them... how do you just shut it off.  How do you process your emotions when you cant express yourself.   This leads me to my latest update... 

More sad news

So I went to see speech rehab on monday and they did a video swallowing eval on me cause i was having A LOT of trouble swallowing thin liquids.  The pain from the surgery is really a lot better but everytime I cough and ESPECIALLY when i vomit it hurts so much.... not just in my throat but it goes up your nose and in your ears and it BURNS... =(  that has sucked a lot.  


So the swallow eval showed that my Right Vocal Cord was paralyzed.  =(  but at least that does explain my trouble with swallowing and why my voice is so funny.  For those non medical people i found a great website with some pics to explain why vocal cord paralysis also affects swallowing.... continue below:


Briefly, the voicebox is composed of a right and left vocal cord that is attached on one end, much like a "V". When the vocal cords are apart, air moves in between the vocal cords into your windpipe that allows one to breathe. When a person wants to sing/talk or say "eee," the vocal cords come together and vibrate very quickly creating the voice.

When the vocal cords are apart, one is moving air in and out from the lungs.

When the vocal cords are together, they vibrate very quickly creating a voice.

A "paralyzed" vocal cord is when one of the vocal cords does not move resulting in a gap between the vocal cords. This gap when attempting to talk results in air escape which causes the "breathy" sounding voice. 

In this illustration, the patient is trying to say "eee," but notice that the vocal cord on the left is not moving to the middle resulting in a gap between the vocal cords. The left vocal cord is paralyzed.

Here is a website video that kinda shows what mine looked like... its exactly the same but for me the right side is paralyzed.  Click on the link below and then click on the video and pay attention to the right side of the video (left vocal cord) and notice how it doesnt really move... mine is the same thing just flipped around


http://emedicine.medscape.com/article/863779-overview



 In some cases, however, the dysphonia can be high-pitched because of a compensated lengthening of the vocal folds to achieve better glottic closure. Often, unilateral vocal fold paralysis (UVFP) is associated with dysphagia, specifically with liquids, because the resultant glottal incompetence can lead to aspiration. This is especially true if the unilateral vocal fold paralysis (UVFP) is due to a high vagal lesion that results in both a recurrent laryngeal nerve and superior laryngeal nerve palsy.


Patients with unilateral vocal fold paralysis (UVFP) often report shortness of breath or a feeling of running out of air. Very little negative physiological impact upon pulmonary function actually occurs in patients with unilateral vocal fold paralysis (UVFP); however, because of the glottal incompetence, they experience significant air wasting and, thus, experience the sensation of shortness of breath and running out of air during speech. In addition, glottal closure is required for individuals to create positive end expiratory pressure (PEEP). Thus, some patients with an immediate postoperative unilateral vocal fold paralysis (UVFP) can experience decreased pulmonary function because of loss of the natural PEEP that occurs with glottal closure. The glottic closure that allows a forceful cough is also compromised and thus a weak, unsuccessful cough is often reported by patients.


SO to summarize

• The tumor was wrapped more like entangled in my nerve to my vocal cords and it did get moved around a lot but it WAS NOT severed!
• My voice stays mostly low pitch and breathy but still sounds like me unless...
• I try to talk loud- when i project my voice gets higher pitched and breaks a little
• With normal talking over long times i start to lose my voice altogether 
• in other words i get voice fatigue very easily
• I get very winded with speech at times
• I choke a lot on liquids and my own spit and secretions which causes me to cough a lot
• i also have an urge to clear my throat a lot which also makes me cough
• My cough kinda sucks so instead i use muscles from my chest all the way to my belly create kinda a big sneeze instead to get the fluids out
• Not sure if its permanent or not will have to wait awhile and see- while what i read online about many like me who go through this says it can take a year or more
• HOWEVER my nerve was NOT cut, and that means if intact it can wake up again and give me my voice back
• Also my calcium levels were very low bc my parathyroid glands (which regulate calcium) were in shock and i am on supplimentation to fix that- so when that gets fixed it may bounce back also cause both nerves and muscles depend on calcium
• I do overall have better spirits and pray everyday for healing so that I can still do the job that I love

WHATS NEXT?


well currently i am on cytomel a short acting form of the Thyroid hormone which is why right now i feel ok.  In another week, i m pretty sure they will take that pill away from me to start preparing me for the radioactive iodine treatment.  I will have to be hypothyroid (very hypothyroid) for about 2 weeks then i will go to the hospital and take the pill.  I ll be on isolation in my own house for about 5-7 days.  Then i can start synthroid (long acting thyroid hormone) it ll take about 2 weeks or so for that to really make a difference and take away all the symptoms (fatigue, moodiness, depression, depressed heart rate, weight gain)... 


So the road to cure is still long for me and there are still challenges to overcome.  But today is a great day.  I got through a whole glass of tea without choking!!! The sky is clear the sun bright and God (along with grandma and relatives in heaven) are watching over me.  I know that this could have been much worse.  They dug all in my chest and all the way to my spine.  Clearly it was spreading and had it hit my lungs it could have been MUCH MUCH worse.  I had a cancer that was treatable and even CUREABLE.  And without chemo or other evil things.  I can have kids eventually.  I can work and walk and communicate (although people have to pay more attention now LOL) 


So this year will be rough. But 5 years from now hopefully i will have a family of my own and this will be just another bump in the road.  I wont lie.  I am very scared of whats ahead.  I feel like i ve been through so much already.  I wish i recorded my voice.  I wish i recorded myself singing to play back for my future children.  I wish i had stopped and had this looked at 5 years ago.  But looking backward wont change anything and only serves to bring me down.  Those who love me have shown me that I can only look forward.  I have to forgive myself as we are all not perfect and I do need to take better care of my body.  This has given me a new outlook on life and my future.  Although i have more bad days than good days, i am hopeful for the future.  I look forward to being healed and getting on with my life and plans.  


I thank you all for your continued support and prayers.  This is a huge change in my life.  Those who know me know that talking and sinigng  and music is my life.  I sacrificed so much to do this job I love and I am confident God put me here to do just that- so he wont leave me without a voice to speak up for patients and teach families how to take better care of themselves.  I am still mourning the loss like someone who lost a limb, but each day as i heal and get stronger i am hopeful that it will return!!


Take care and thank you


Lindsey