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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.