Tuesday, March 13, 2018


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 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.


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


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.
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


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


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


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.