PEG TUBE SURGERY REMOVAL

Had my PEG tube removed today.  It had to be performed while I was under anesthesia due to the type of tube I had.  I was happy about that as I didn't want it to hurt when they pulled it out.  My brother drove me there as I was not allowed to drive home.  

It hurt a bit and I told the doctor but he said to take Tylenol and it would be healed in 2 days to a week.  I had a small amount of Hydrocodone left over so took some when I got home and it helped with the pain.

They told me I could eat and bathe today but I'm not comfortable with doing that just yet.  Afraid it will leak out of the hole that is not closed yet.

Sure hope it heals well.  I am to clean it daily but the doctor said I did not have to put antibiotic cream on it.  Can put a pad for a couple of days then just let it go uncovered.

I will remove the bandage tomorrow and hope I don't freak out at seeing the open hole.

I am so relieved that it is all over.  No more stinky, corroded, and bulky tube attached to my body.  

A YEAR AGO TODAY

It was a year ago today that I found a lump on the left side of my neck.  I had been having ear aches and trouble swallowing for about a year.  It took months before it was discovered that I had Squamous Cell Carcinoma HPV16+ on the base of my tongue which had metastasized to the lymph node in my neck.  It was stage 3 Oropharyngeal cancer.

It's been a rough year starting with surgery to remove my left tonsil and biopsy of my tongue.  Then two more biopsies before it showed cancer.  Then had surgery to place PEG tube in my stomach.  

The fitting for my face mask was terrifying as well as the 35 times I had to wear it and be strapped down on the table to receive radiation treatments for 7 weeks.

I am 5 months out of treatment and I have many terrible side effects of radiation therapy that I will have to live with the rest of my life.  Also lost a lot of hair at the base of my neck that is slowly growing back even as I continue to lose more hair all over my head.

Mucus that chokes me sometimes has yet to go away. Lymphedema in my neck that I massage daily to help drain.  I have a little Fibrosis on the left side of my neck that causes some discomfort when touched or when I sleep on my side.  I still get thrush in my mouth now and then and use Nystatin swishes to get rid of it.  My voice is still hoarse as there is still inflammation in my throat.

I have developed some enlarged taste buds called Circumvallate Papilla on the left side of my tongue that rubs on the side and roof of my mouth.  This is not painful but is a very aggravating sensation.  There is nothing that can be done to reduce them.

My throat is still red and sore when I swallow.  I have to drink a liquid with every bite of food.  I have no saliva so don't have the needed enzymes to break down foods like meat, potatoes, cheese, pasta, rice, etc.  My sense of smell is improving but some things still stink.  My taste is returning but really slow.  It takes me a long time to eat a small portion of food and have to spit out often.

My PEG tube stoma has never healed completely and is red.  It bleeds every time I clean it.  It has been in my stomach for 8 months now.  

Every night for 5 minutes, I have to use dental trays with a solution to prevent my teeth from breaking apart.  Also have to brush with a special toothpaste after every meal or snack.

They call this the "new normal".  I call it misery.  However, my latest PET scan was clear of cancer.  I am thankful to still be here but live with the fact that science prolonged my life but did not save my life.  I still have the HPV virus.  I belong to the 1% of the population that can't fight it off.  Medical Science does not know why.  So it still lurks hidden inside me... laying low... till the next time it sees a door open in my immune system where it can rear its ugly head and cause cancer once again.  

... So this is my life.

P.S.  I'm extremely happy that I have lost 30 pounds.

OLFACTORY NEWS

HURRAH!  My refrigerator doesn't stink anymore.  The stinky smell that has been plaguing me for so long has slowly gone away.  I sometimes can detect it just a little bit but mostly it is gone.

My taste buds are coming alive again.  So far, the one thing that tastes good is ice cream.  I have been eating different things this week and rice feels terrible on my tongue and in my mouth.  I made a beef stew with rice but could only eat the broth and carrots.

Also tried some mashed potatoes and gravy with meatloaf.  Had to spit the meat loaf out.  Was able to eat several bites of potatoes and gravy.

Made an appointment with the Gastro doctor to have my PEG tube removed.  I will see him on the 25th of this month for the evaluation and then will schedule the date for removal.  Can't wait to have it taken out.  I've had it for 8 months now.

Even if I have trouble eating enough to sustain me I can still drink the protein drinks that I have been ingesting.  So I should be OK. 

CARROTS

Today I tried several foods with some success.  For breakfast I tried some Cream of Wheat.  I had never eaten this hot cereal so didn't know what to think of the first bite.  But after the second bite I couldn't eat any more of it.

Then later I tried a small piece of banana which to my surprise tasted as it should.  So I had several bites of it with some soda to wash it down with.

Tonight I boiled some carrots and put melted butter on them with some salt.  I ate all of the pieces that I cooked.  They tasted as they should.  Then I tried some left over lasagna.  I took one bite and it tasted pretty good but still burned my throat so I threw it out.

Then I ate my daily half a cup of ice cream float.

I also ingested through the tube 4 protein drinks.  All in all, I had a pretty successful day eating.

GETTING OFF THE FEEDING TUBE

Last night I ate some more of the black eyed peas and rice.  This morning I made some grits and butter and was able to take a few bites of it.  Did not have a protein drink for breakfast.  Going to go to the store and buy some things that I think I can eat.  Will also buy some more protein drinks that I will chill and drink.  Gotta get serious about getting the tube out.

Tonight I baked some Meat Lover's Lasagna.  It smelt fine and it tasted fine but it burned my throat and mouth.  I ate several bites anyway and sipped some coke with each bite.  Had to spit out some of the meat but the sauce tasted good.  I then had to use the Magic Mouth Wash to ease the burning.

I'm thinking about trying Chinese food tomorrow.  I want to eat some vegetables. 

ENT AND ONCOLOGY APPOINTMENTS TODAY

Saw my ENT doctor today.  He scoped me and said no evidence of a recurrence but still have some edema.  I was sure of that as I still speak with a hoarse voice.  Wants to see me again in one month and will scope me every two months.

Then went to my Oncologist.  He listened to my lungs and looked in my throat.  Was very pleased with my improvements.  I told him I wasn't in any pain but did have a lot of discomfort with my throat, tongue, and neck.  

Also told him I wanted to have the PEG tube removed. He informed me that my ENT doctor could remove it if he would agree to it.  I didn't know that.  He cautioned me to discontinue using the tube for one month with no weight loss before having it removed. That might be hard to do.  He wants to see me again in two months.

Went to the Financial Services Office and obtained another application for assistance as this current one will expire in February.  I'm sure I will be getting another PET scan in a few months and don't want to have to pay almost $300 as my portion of payment.

I'm feeling pretty good today.  It is one of my "good days" and I'm feeling happy.

HAPPY NEW YEAR!

Went to my brother's house to pick up some supper for tonight.  Had a dog sitting job till noon so couldn't go for lunch.  Brought my little dogs along and they were happy to go for a ride in the van.  They were a little scared of my brother's large dogs but stayed up on the sofa next to me where they felt safe.  Had a short but nice visit and then came home. 

I brought them a cherry pie I baked last night.  Cut it in half and kept some for me.  I was able to take a couple of small bites of it last night.

Brought back some pork roast, black eyed peas, smothered cabbage, cornbread, and a glazed donut.  When I got home I heated up a tablespoon of peas and cabbage and roast.  I didn't know what to expect from my taste buds and was a little scared to try.  However, I was surprised that the peas were very good and I could have eaten more than a spoon full.  

Next I tried the cabbage and it tasted good but burned my throat.  It was like eating pepper.  Not sure why unless they put a lot of hot spices in it.  

Then I tried the roast which I was craving.  Not happening.  I chewed on a small piece but had to spit it out.  It tasted good but wouldn't break down in my mouth so that was a disappointment.  

I knew that the corn bread would not break down either but tried anyway.  Drowned it down with coke.  

Then I had 3 bites of the donut.  Tasted so good.  I was so happy that it tasted so good.  Had to drink some coke with it but it did not clump on my tongue like bread does.  I really enjoyed it.

So that was my eating experiment for the day.  Coming along slow but I am thankful for every advancement.  I'm going to be pushing myself for the next couple of weeks as I am planning to have the PEG tube removed this month.  Scared as all get out to do so but I need to start eating. 

P.S.  Later tonight I cooked some rice to mix with the pork roast and gravy.  Was able to take a few small bites.  It tasted kind of funny but I was able to swallow it with a small piece of meat and coke.  That was the second time (last night I baked pie) I used my stove in almost a year.