Friday, March 30, 2012

Ahhh the joy of being Hypothyroid... =(

So its been a few weeks since my last blog, thought i would take a minute to go into the full brunt of hypothyroidism...

I was put on my cytomel (short acting thyroid medicine) from March 2nd to March 16th... then nothing.  I went to visit my brother for a week which was FANTASTIC... North Carolina really is a very pretty and such a CLEAN place... like really they have signs posted to list how clean each place is right down to their elevators- i swear u could lick the ground in the elevators and how many places can u say that LOL

I digress...
So the first week was ok i got tired but still could walk around and symptoms were pretty mild. I was able to craft and crochet, I was able to clean a bit and walk the dog... it really wasnt that bad... yet...

 I was also instructed to start a LOW IODINE diet.  Thats not low salt... its LOW IODINE... problem is - since the 1930s IODINE has been added to everything... to prevent thyroid goiters dontcha know LOL... which was a big problem back then... not enough iodine in the diet... hence where salt goes iodine does also.  So the only thing i can have is FRESH veggies, fruits (sadly i dont like many of them), oatmeal, pasta, rice, chicken and beef... yea... without any salt or anything packaged cooking does become a challenge.   its gets boring fast... there is only so much lime paprika garlic oil salad dressing one can eat...

You really dont think how much salt we truly eat in our american diet.  I cant even use mustard or ketchup.  Nothing canned.  Not even Sea Salt which says on the package NO IODINE ADDED... why ... because Iodine is a natural element in the ocean so when scientists tested the iodine content it was still too high!!!  ARGH... I finally found some salvation in my new best friend- Kosher Salt.

** a side note on kosher.  Kosher isnt an ingredient in jewish food it talks about how the food is prepared... part of that preparation involves using salt to absorb ANY of the blood and fluids in meat which is strickley prohibited in the diet.  Part of this process involves taking the meat and covering it in this salt then rinsing it off.  Its not used in actual consumption ONLY in preparation as such they DONT ADD IODINE to it... MEANING I CAN FINALLY EAT SALT... for those nerds like me out there just plain ole NaCl!!  no fillers no addiditives nothing prepared by machine... ***

Once we got kosher salt food perked my spirits up a little.  See previous to that if i had salad- i would use lots of lime juice with olive oil and spices (non salt spices) usually paprika to add flavor.  I became a huge fan of cucumber and onions.  got tired of chicken quickly... but onto the meat of the matter

Hypothyroidism- The bad, and the ulgy

So starting round the 19th  i started to feel different... i would say bad but then a week later i really really felt bad so for now i ll only say it was just different.  I took daily naps, and felt more depressed and just off altogether.  Went for repeat blood test which finally showed i was ready (my tsh was 54 - only needed to be 30)... I was then told monday the second i would go to nuke med (nuclear medicine) and i assumed that starting monday i d get my pill and be on my way to finally feeling better and eating normal again...

JUST KIDDING...

Nuke Med called today to say the process will go as follows... Monday the 2nd i will get a tiny pill then go home... I ll come in Wed and do a body scan (see below )... Then i come in Thursday and FINALLY get my therapeutic dose of radiation for my cancer... and lastly on FRIDAY i will be able to resume my thyroid meds and a normal diet ... by Saturday i ll be off isolation and able to hug my husband again.  I also asked if i can be bridged with my cytomel seeing how i am already so symptomatic and by the time i actually take my pills it ll be ANOTHER TWO WEEKS OF THIS MADDNESS!!   (that means i ll take both long and short acting meds... it ll make my symptoms go away faster even though my blood counts will still suck )...

So thats the bummer- My TSH (thyroid stimulating hormone) was almost ready on March 15th, however it spiked to 54 by March 23rd... by April 9th (when i can take meds...) i imagine its gonna be way worse than that...

On March 23rd- i had the worst night of my life!!  I admit i forgot several doses of my calcium (tums)... Since the surgery i was taking up to 1600 mg elemental calcium three times daily... SO starting back in mid march when i was with my brother my hands n feet were a little tingly... kinda like you lay on your arms wrong... but that was it so i took doses when i remembered and thought nothing of it...

then it started

well that day on the 23rd i was going in to check my blood (thats the test that later came back at 54) and  could barely keep my eyes open ... I had to use a wheelchair to get to and from the appt...  exhausted cant cover it... it was past that. Just to raise my arm made me dizzy.  And i was in such pain... i spent half the day crying- saying "its not supposed to be painful, why does it hurt?"

James was too afraid to have me take pain meds with my low metabolism.  He held me tight and rubbed and kissed my forehead.  It was the hardest night of our marriage and my life thus far.  The dog had bad diarrhea (?not sure why) James went out 7 times in one hour to help him... both cats were re-guritating food... all in all not a good day at all... i couldnt get comfortable anywhere... it was just bad...

My body ached all over.  My arms were sore, my chest was sore.  it was an achy an overworked it type pain.  Like acid was burning me from the inside out.  i took a hot shower, laid down... covered up... Despite exhaustion I couldnt sleep cause of the pain.  Everything down to breathing was a struggle.  my joints were like tiny alarms going off that just fired all the time and i couldnt make them stop... I hated feeling that way.  I took two extra strength tums, two extra strength tylenol and prayed.  We all finally moved to the living room where i could sit up.  Turned the heat on cause i was soooo cold.  I spent most of the month feeling cold, but that night the temp dropped outside to 38 and inside the windows leak so bad it was in the 60s in the apt.  I was covered in 5 blankets  and still shivering which didnt help the pain at all... By 4 am i finally slept.

When i woke up in the am my pain was gone i was still very tired from the rough night, but us the animals and the marriage survived.  I called the endocrinologist who said it was a combo of my hypothyroid with my low calcium level that did that.  Needless to say i take my tums 3 times a day now and dont miss a single dose.  So after reading that night you can imagine how excited i am to spend the next week and half waiting for my pill.

I am very very tired all the time.  I am very very dizzy with little movement.  Even if my husband moves around too fast it gives me vertigo.  Once i get going i am ok but the getting up and sitting down is a little rough.  I sleep 2-3 hour naps 2- 3 times a day... =(  that part depresses me the most i hate sleeping the day away.  I am very depressed... Doesnt help that we are having car troubles and it looks like we ll be forced into one car from now on... in order to make finances easier we will also have to move somewhere cheaper by June as well...

When it rains it pours... My pastor said God doesnt give us what he doesnt think we can handle- well this week has been very very rough- but we do endure.  James and I are much much closer not just as a couple but as individuals who have struggled as well... He is doing a great job taking care of me which i know is not easy... pushed himself to places he didnt think he would go.  And this month is our 6 month anniversary of marriage to boot!!  Hard to imagine but yea all this in the first year of marriage.... tallk about up hill both ways in the snow with dogs chasing... I learned that is a metaphor for slow growing cancer with depression n pain and sorrow wrapped in an inability to communicate and disability with the IRS and DMV chasing us both ways with the Dept of Education loan services in a close third ... in the cold... with sick pets...

at least my phone works, tv isnt broke and  i do have a really cute very well behaved puppy ... and well it can always be worse... its only 7 more days before i can take meds and start to feel normal again... you can do anything for 7 more days...

sorry this was kinda long... took me 2 days to write it all down... its kinda all over the place and as scrambled as my emotions but i hope it gives a glimpse into how im feeling and isnt too morbid... or confusing...

its naptime again so im gonna run... will try to finish an update that explains the body scans and radiation and its glory im about to experience...

Gods Blessings and Peace and good health to you all

Wednesday, March 7, 2012

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.



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

paralysis
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

Saturday, March 3, 2012

Post Op day 1 and day 2

Hello all....

So the surgery went very well...

HERE IS THE BEFORE



After 3.5 hours later... (and they removed the staples and placed steri strips) on Post op day 1 i looked like this

Good news:

He thinks he got it all... Turns out the cancer was spread a bit worse than the scans showed.  My thyroid wasnt the bad part but my lymph nodes were.  They took all level 3 4 & 6, then dug out my thymus gland (which is directly underneath the top of the sternum).  You need the thymus in childhood to help mature your immune system, however as an adult it should be shriveled up - HOWEVER mine was enlarged and funky looking.  Then he dug all the way to the spine to make sure there werent any other angry nodes.  And HE THINKS HE GOT IT ALL!!

Other good news
He did spare my parathyroid glands (they help me regulate calcium levels) however due to the trauma of surgery my levels are way low, thankfully easily fixed with a few tums a day

Bad News:
The tumor in the thyroid was wrapped around my recurrent laryngeal nerve.  Like encased in it. As a result my voice is a little funny.  I am very hoarse and my pitch has changed - a little higher than before.  Not sure where this will go I am scheduled for first speech rehab appt monday!  I know the endotracheal tube can change things a little but he did say that he had to move than nerve around quite a bit.  it may get better we will see.  For now... I AM ON VOICE REST... complete VOICE REST... and i hate it.  My family is here i never see them and i can t talk.  IT SUCKS... makes me very sad- but i understand why.  I understand if i give my voice time to heal i might be singing again.  Now when i listen to music all i want to do is cry.  But its only day 2 so i get it.  I am still mourning the loss anyway.  

here i am with my new dry erase board so i can tell my hubby how much i love him... (and my family too!)

Swallowing
So post operatively i had LOTS of trouble swallowing thins (for those outside medicine it means anything with the consistency of water).  I would cough and choke and that would hurt so bad i would cry.  I got eval by speech before i left the hospital and they scheduled me for a video study monday.  Said its likely due to weakness both from the low calcium level and from all the moving around they did in that area.  So for now i am on nectar thick soft solids.  And my hubby made me the BEST mac n cheese EVER!!  it was warm and tasty!!


Not very bad but interesting:
I am numb over most of my neck.  From my chin to the very side on the right all the way down to the sternum.  and over part of the left side as well.  Its not bad and i can live without it but its a unique sensation.  Esp when i go to shave my chin hair- i cant feel where the razor goes LOL

Lets see what else:

I feel very tired at certain points in the day- can be from my timing on the cytomel dose.  Without my thyroid i start to run out of metabolism energy.  The cytomel is SHORT ACTING thyroid hormone.  It helps make the symptoms better, although i feel like i cant stay awake sometimes.

Pain
MUCH BETTER TODAY!!  Its post op day 2 and i take half of the pain meds im supposed to and only 3 times a day.  Without all the coughing im way better.  Although i am lightheaded from time to time.

I got a shower today and felt like a new woman.  I am able to get around and feel sturdier on my feet.  Just to be safe I am keeping my knee high socks on.  Dont want a clot in my legs!

I am very grateful for all your prayers and good thoughts.  While I was in the hospital the chaplain prayed with me and brought me the PRETTIEST purple prayer shawl.  I wrap myself in it a lot.  It helps when i am sad.  I dont want to give you the wrong impression I am in good spirits overall.  It just feels like i lost something and i dont know if i will ever get it back.  and that takes some adjusting.

Meds
So now im on 6 meds so far LOL... its wierd having a schedule.  I take 4 tums twice daily, vit d twice daily, cytomel twice daily, my pain meds, nausea meds and a few others for symptom control.

Enjoy some pics from the hospital. I did have a good time and overall a pleasant experience with my first hospitalization


 We played Gin a lot... and I WON! =)