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. 

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.