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Thursday, October 25, 2018

ENT APPOINTMENT - OCTOBER 2018

Saw my ENT yesterday and he scoped my throat.  Said it did show a little improvement.  I am still a little hoarse and my left side of my tongue is sore.  I have enlarged taste buds in that area and they are now hurting.  He gave it a good exam and didn't recommend anything for it.  He initially diagnosed it as Circumvallate Papillae about a year ago.

Being under stress has been linked to many health issues, including swollen,enlarged papillae

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There are home remedies and over-the-counter (OTC) treatments available to reduce your symptoms and help the condition resolve faster. These include:
  • rinsing and gargling with salt water
  • brushing your teeth at least twice daily, and using mouthwash to rid the mouth of harmful bacteria
  • avoiding irritating foods (eating blander, smooth foods may be beneficial)
  • taking OTC topical treatments like Zilactin, which cover the bumps like a bandage, protecting them from friction that could irritate them further
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Wants to see me again in 3 months.

Saturday, October 6, 2018

FINALLY ATE A HAMBURGER

It's been about a year since I had a hamburger.  I started craving one about a month ago but knew it would not be pleasant to eat one so didn't.  However, yesterday I tried and was able to eat a half of a burger.  Then today I ate part of a steak soft taco and a taco supreme.  They didn't taste like they were supposed to but it wasn't too bad.
I'm 14 months out of treatment and things are getting a whole lot better.  Still don't have much saliva.  I figure I got about 5% back and am hoping for more as the years go by.  

I'm still a little hoarse and my throat hurts a little and is red but it's not so bad.  I have days when I'm up and days when I'm down.  I just let it happen and go with the flow.  I think about the cancer returning and won't be surprised if and when it does.  I'm going to try and live the rest of my life with as little stress as possible which is extremely hard for me to do.

Looking forward to cooler weather and will be going to the beach with the doggies this winter. 

Thursday, September 6, 2018

ONCOLOGIST APPOINTMENT

Saw my Oncologist yesterday.  We discussed my continued hoarseness and he said that it was not unusual at 12 months out from treatment to be having this situation. 

He has scheduled me for a return visit in 4 months.

I continue to see my ENT doctor avery couple of months and get scoped every time.

My throat is very sensitive to foods that are coarse or spicy or even mildly seasoned.  I am able to eat more of a variety of foods but have a sore throat afterwards.  I no longer eat ice cream but do have servings of Jello which feels nice and cold to my throat.  Still can't eat meat.

Have been experiencing some bad days where I feel sad.  Not sure I want to call it depression.  It usually lasts only a few days at a time and then I force myself to get dressed and get out of the house.  I'm bored most of the time.  No company.  Very lonely.


Thursday, August 23, 2018

ENT CHECK UP


Saw my ENT doctor today.  He scoped my throat and said there was not much swelling at the top of my esophagus.  He is concerned about my continued hoarseness.  I told him it gets worse when I eat certain foods that scratch my throat and foods that are spicy.  So he recommended I begin taking omeprazole prior to eating spicy foods.  He wants to see me again in 2 months.

Got home and I researched the drug and found that this drug is also known as Prilosec which is a Proton Pump Inhibitor medicine designed to reduce stomach acid. If a person has too much stomach acid, it can flow into the esophagus. This can cause severe forms of heartburn and other medical problems.  I'm not having any heartburn.

In 2017, researchers found that long term use of Proton Pump Inhibitors doubled the risk of gastric cancer.  My mother died from stomach cancer.  She took this drug for many, many years.

Researchers also concluded that it caused five percent of all esophageal cancers.  Prilosec dangers also include an increased risk of kidney disease and long term kidney damage.

Prilosec alternatives include:  Maalox, Alka-Seltzer, Pepto=Bismol, and Tums.  

I think I'll use one of these instead.

Friday, August 10, 2018

ICE CREAM ADDICTION

Had my stomach tube removed 4 months ago.  They would only remove it if I said I was able to eat.  I lied in order to have it removed.  I thought I would just drink the protein drinks I was putting down the tube and that would be fine.  I just wanted that awful, corroded thing to be out of me.

Well my plan worked.  For weeks I drank my protein drinks and eventually started to try various soft foods.  My taste buds were still not right and things tasted awful.  However, ice cream tasted pretty good.  Not every kind of ice cream but  Blue Bell Vanilla tasted the best.  Still tasted a little salty at first but I was beginning to be hungry most of the time so it filled my stomach which was great.  Eventually I was able to eat more food but only a few bites and then I would fill up on ice cream.

That soon became my crutch.  I depended on that ice cream so much and it became my main source of nourishment.  I would panic if I was getting low on my supply and would quickly get to the store for more.  Towards the end I was eating several gallons a week and when the scale started to show weight gain I knew it was time to stop.

So this week I began to wean off of the ice cream.  The first few days were awful.  Every waking moment all I thought about was ice cream.  I reduced my intake to one serving a day for a few days.  Then when I ran out I didn't buy any more.  It's been 3 days now that I have not had any ice cream.  I'm eating jello a couple of times a day and that satisfies my craving.  

I am able to eat almost anything as long as I wash it down with a soup or a drink.  Still can't eat meat though.  I consider myself a vegetarian of sorts.  I eat a lot of vegetables - mostly squash, zucchini, cucumbers, carrots, spinach, etc.  I also eat a lot of creamy soups.  If I cook a stew I will use meat for flavor but am unable to swallow it.  I sure would like a hamburger but know it will be an unpleasant experience.

So that is my story of ice cream addiction.  It is a real thing.  Who knew?    


Wednesday, June 20, 2018

ENT APPOINTMENT

Saw my ENT today.  Was scoped and there is less edema than the last time.  So that is good news.  I'm still a little hoarse though.

Told him about my coughing fits and he said it may be allergies or perhaps the Lisinopril meds I'm taking for high blood pressure.  I'll talk to my family doctor about this.

I'm eating more varied foods and enjoying it.  Still can't eat meat or bread.  Still eating a lot of ice cream but am trying to cut back as I am gaining weight which I don't want to do.

Having no saliva is the main complaint at this time.  Otherwise I am doing well.  Getting my strength back.  Doing some outside gardening and upkeep of the house.  I take afternoon naps which is nice.

I will see him again in 2 months. 

Friday, June 1, 2018

DID I REALLY EAT THROUGH A PEG TUBE FOR 8 MONTHS?

My healed stoma.

It was a year ago today that I had a PEG tube placed in my stomach in order to feed myself.  I used it for 8 months and then had it surgically removed.  At the time, I could not eat very much of anything but I wanted the tube out so I began to experiment with different foods.  It was slow at first.  I drank many protein drinks and then ate ice cream.  Eventually I was able to eat a few bites of soups and other soft foods.  I continued to aspirate on thin liquids, especially water.  

Today, 10 months out from treatment, I no longer drink the protein drinks.  I have aspirated only a few times in the last few months.  A typical day for me is oatmeal for breakfast with banana and raisins.  Lunch is light with maybe a cucumber or a squash cooked in olive oil.  For supper I might have vegetable soup and crackers.  And of course I have ice cream several times a day.  It is my staple food.  

Without saliva I still can not swallow meat.  Seafood is also hard to swallow.  However, I continue to try.  I have to drink after each bite of food so I try to eat things that are soupy so I don't fill up on water or soda.  When I look back on the PEG tube days, I can't believe I experienced that situation.  It seems like it was not me but someone else who went through that ordeal.

The mucous is no longer a problem.  Lack of saliva is probably the hardest thing I am experiencing at this time.  It gets so bad that I often start to cough and choke.  I keep water close by and use Biotene spray but nothing lasts for long.  I cough a lot.  If I know I'm going to have to talk for any length of time, I have to place a Xylimelt tab on my back tooth which keeps my mouth wet.  If not, I choke when talking.  I think this will be a problem for the rest of my life.  It has not improved at all and I don't think it will.  My saliva glands are fried.

I have good days and bad days.  Some days I just stay on the sofa and watch movies - don't walk the dogs, don't get dressed, don't answer the phone.  I'm bored and lonely.  I hate summer.  I hate the extreme heat.   It's too hot to go to the beach.  I'm stuck in the house for the next 6 months.  Why in the world do I live here in the South?





I recently started a container garden on my front patio.  I enjoy watching my plants grow and rooting new ones.  I have very colorful containers and have decorated the area with windchimes and other whimsical things.  It makes me feel happy to sit on my hammock swing and look at the beauty. 



I continue to see my ENT and my Oncologist every few months.  So far - everything is OK.


Thursday, April 26, 2018

ONE YEAR AGO TODAY

It was one year ago today that I had my 3rd biopsy.  It was a Core Needle Biopsy performed at the Thibodaux hospital - as the Houma hospital did not do this type of procedure.  In my opinion, this should be the first procedure done as it is more accurate than a Fine Needle Biopsy.  The doctor (Dr. Arthurs) was very confident that this would provide accurate results and he was right.  

I was so relieved when the results came in.  Now I knew just what I had and could begin treatment.  In my gut, I knew it was Squamous Cell Carcinoma but needed a biopsy to prove it.  I was 69 years old.   The same age my father was when he died of the same cancer.

On the morning of February 3rd 2017, after brushing my teeth, I looked up in the mirror and saw a lump on the left side of my neck.  Immediately felt that this was serious and not just a swollen gland.  Just a gut feeling but very scary.  It took 3 months to be verified.




Sunday, April 22, 2018

FINALLY ATE SOME FRENCH FRIES


Last night I cooked some french fries and dipped them in ketchup.  I've never been a ketchum eater but figured that would make my mouth wet and easier to be able to swallow the potatoes.  

Last time I tried to eat fries they just stuck to my teeth and I had to scrape them off.  Couldn't swallow them and they tasted bad.  So this is good news.  My throat did burn from the ketchup but I ate some ice cream after and that eased the pain.

Maybe I'm getting just a little bit of saliva back.  That would be nice.



Tuesday, April 10, 2018

UPDATE ON EATING

Today I was able to eat some turkey sausage.  I was very surprised that I was able to swallow small pieces of it with ease.  I cooked it with some red beans.

I am improving a lot when it comes to eating.  Still can't eat hamburger meat or chicken.  I eat a lot of stews and soups.  However, I'm craving meat, especially steak and pork chops.   

I'm still eating a lot of ice cream.  I have some after every meal.  Since I can only eat a few bites of real food it is what fills me up and also feels good to my throat.

Still having a red and sore throat.  I cough a lot.  Am drinking more water than ever.  The mucous is not as bad as it had been.

The worst symptom is the dry mouth.  Still have no saliva.  Use Xylimelts often to keep my mouth wet.  

Feeling  pretty good otherwise. 

Tuesday, March 13, 2018

CONSTIPATION AGAIN

I'm having another bout of constipation.  This is the third day of taking Miralax, glycerin suppository, and an enema with little results.  Just called my family doctor for some meds to help with this.  It's very painful.

Thursday, March 8, 2018

THE ART OF SURVIVING ON MY OWN



The Art Of Surviving

On My Own


The year 2017 was hard in so many ways but it also could have been worse so I can’t say it was a ‘bad’ year but it definitely had more downs than ups. It had more heart breaks than I expected. It wasn’t the year I hoped for. 
But I learned something valuable that year. I learned the lesson that the universe has been trying to teach me all along but I was too stubborn to listen.
That was the year I learned how to depend on myself. That was the year I realized that family doesn’t always mean love, and friendship doesn’t always mean forever. That was the year I learned that I'd better find a way to always make it on my own because my friends won’t help me and my prince charming won’t come save me and my family won’t always be there.
That was the year I learned that I need to get back up because I can’t get lazy and I can’t make temporary decisions anymore because I’m waiting for something else to happen.
That was the year I had to stop waiting. That was the year I learned that I have to work on every little part of myself. That was the year I learned that pain will never leave me alone but I have to learn how to smile. I have to learn how to wake up and find something to look forward to. I have to learn how to walk hand in hand with pain instead of trying to run away from it.
That was the year I learned that healing is not a phase, it’s an ongoing process. It’s a work in progress. It’s something you have to keep doing every day and every night because the pain might resurface and you’ll make the same mistakes again.
You’ll get heartbroken again. Someone you love will disappoint you.  You won’t always get what you wished for and as long as you’re still alive and breathing, you’ll have to figure out a way to make it — alone.
That was the year I learned that I’m the only one who can heal myself. I’m the only one who can save myself. I’m the only one who can make myself smile when things are going wrong and maybe one day I’ll learn how to make them right, but for now, I’m learning how to live with the wrongs, the mistakes, the disappointments because they won’t just go away. They won’t magically disappear.
That was the year cancer tried to kill me.  Life tried to break me into pieces but instead of asking for help or trying to find answers from people, I looked within. I came up with my own answers. I trusted myself for once, not in my decisions, but in my ability to overcome whatever life decided to throw at me and that made all the difference.  
I survived.

CAT SCAN CLEAR OF CANCER IN HEAD AND NECK AREA

Appointment with ENT today.  No need to scope as I had scan yesterday.  He did examine my throat and said it looked good.  He looked up the results of my CAT scan of head and neck and told me it looked good.  I told him of my concern that this type of cancer often returns in the lungs and my Oncologist ordered only head and neck scan.

He wants to see me again in one month.  

The Oncology office called when I got home today to say scan was clear of cancer.

Today was a good day.

Tuesday, March 6, 2018

ONCOLOGY APPOINTMENT TODAY - 6TH MONTH CHECKUP

It was a year ago today that I had my first biopsy and my left tonsil removed.  What a year it has been.

My Oncologist is very pleased with my recovery - even though he admitted it has been slow in coming.  Six months out of treatment and my voice is still hoarse and I still have some edema in my throat.  It is also still a bit red and a little sore when I swallow food.  I am eating a lot of different foods and my taste is improving as well as my smell.  Still having a lot of mucus but that is also improving.

Saw my ENT last month and was scoped.  He said all looked good with just some edema.
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Tomorrow I will have my 6 month scan.  It will not be a PET scan but a CAT scan without contrast.  Oncologist told me that the insurance will not pay for a PET unless there is cause for concern.  I'll know the results in 3 days.

I have been eating a lot of ice cream as it is the only thing that tastes good and feels good in my throat.  Other foods are not really enjoyable but I force them down with coke.  Because I have no saliva I still can't eat meat or bread.  Very hard to eat potatoes even drinking coke with every bite.

I am maintaining my new weight of 140 pounds.  I get on the scale every day and if I see any gain I cut back on the ice cream.  I will NOT gain that 30 pounds I lost back.  I like the way my clothes fit now.

I am back on all of the meds I was on prior to my illness.  Taking blood pressure meds, cholesterol meds, and meds for diabetes.   Now that I'm eating again all these things have resumed their high unhealthy levels.

I'm feeling pretty good these days.  Looking forward to a good 2018.

Wednesday, February 7, 2018

ENT DOCTOR'S APPOINTMENT TODAY FOR PAIN IN THROAT AND EAR ACHE

Had a scope done today.  Have been having pain in my throat and ear.  Doctor said my voice is still raspy due to edema.  He did not see any evidence of disease.  Said there was some redness in my sinus area.  Also cleaned out my left ear of built up wax.  Gave me two prescriptions.  One was an antibiotic and one was a steroid.  Will see him again in a month.  

Came home and took a pain pill as my nasal passage was burning from the scope.  This burning lasted much longer than it has in the past.  Tonight I am not hurting in my throat or ear when I swallow.  Only took the antibiotic.  Will start the steroid tomorrow.

Friday, January 26, 2018

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.  


Saturday, January 20, 2018

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.


Thursday, January 11, 2018

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. 

Friday, January 5, 2018

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.

Thursday, January 4, 2018

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. 

Wednesday, January 3, 2018

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.



Monday, January 1, 2018

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.