INSURANCE WOES ALREADY - DAY 25

Was informed today that the local Rheumatologists do not accept my Humana Choice Regional PPO insurance.  Is this the beginning of insurance problems I might have when in need of a specialist?

I spoke to someone with Humana and they informed me that there was a doctor (Luis Espinoza) in Thibodeaux that would accept my insurance.  I called that clinic and it was already closed for the week.

Dr. Beyer's office called to tell me where and when my procedure will take place.  I am to be at Terrebonne General Hospital's Out Patient Pavilion at 7:30am on Monday April 3.  Must be fasting so nothing after midnight the night before.   My neighbor Evelyn will be taking me.  Really dread this procedure but it may be the turning point in my care.

DAY 24 - AUTOIMMUNE TESTS NEGATIVE

Had appointment with ENT doctor today.  He looked at my throat and said it is healing well.  I informed him about the boils and also a lesion on my chest that just came out.  He said it was caused by staph.  While waiting for him to tell me about the results of the blood work he said he was going to refer me to a Rheumatologist.  I couldn't believe my ears.

I told him that I had made a bet with my neighbor about the blood tests and wondered if I had won.  Then I asked about the results of all the tests and he said the ones he suspected would show Autoimmune Disease were negative.  Some results of the other tests showed borderline evidence of inflammation.  Of course I have inflammation.  My lymph node is swollen and I have a growth on my tongue!!!!!  So I won the bet.

The only thing he said that made any sense to me today was that tumors don't usually respond to antibiotics like what happened with my reduced lymph node.  So he thinks that I don't have a tumor in my lymph node and that seems to be why he continues to believe it is not cancer.

I was just about to ask about another biopsy when he said that he was going to schedule an Ultra Sound Needle biopsy while waiting to get in to see a Rheumatologist in Houma which sometimes takes up to 6 months.  I expressed my opinion that I feel the lymph node biopsy will reveal exactly what we need to know to continue with treatment.  

I'm waiting for a call now from the scheduling nurse to see when we will do this procedure.  I asked if I could take a Xanax prior to treatment as I will be awake for it and he said yes but someone would have to drive me home.  I assured him that it would not be necessary as I am able to drive while on .5 Xanax and have done it many times after a dental appointment.

He gave me a prescription for the same Sulfamethoxazole/Trimethoprim Suspension that I was on for 10 days and completed one week ago.  Now here we go again.  Just when I was getting my system cleared of all antibiotic drugs.

As far as I'm concerned, I will not be going to a Rheumatologist as I have no symptoms that they would be looking for.  After the needle biopsy I will take the results and seek a second opinion, or he will refer me to an Oncologist.  One of us will be right and one of us will be wrong.

DAY 21 - EMOTIONALLY EXHAUSTED

Well here it is 3 weeks after surgery and I am feeling a bit stronger.  Actually got on the treadmill and walked slowly for half a mile.  I feel the need to get back to where I was physically before the surgery as I expect another surgery in the near future.  As hard as it was for me to handle this last surgery I can't imagine going through another one as weak as I am.

I can swallow without pain but still feel the lump on my tongue and my lymph node seems to have gotten a bit larger.  My boil is draining and healing well but now have a yeast infection and burn in my genital area from all of the antibiotics.  Using over the counter creams to heal the area.  It's working but will take time.  I've been through this before so know what to expect.  I can't sit but must lay in bed or the sofa all day.  I've been on and off of antibiotics for the last 6 months.  My body just can't take it anymore.

My level of anxiety is under control with the use of Xanax but depression is fighting to get hold of me.  I cry daily... in fact, I'm crying now.

I have a decision to make concerning my ENT doctor.  I'm probably going to have to get a second opinion somewhere else.  I have lost confidence in him and no longer think he has a clue as to what's wrong with me.  My concern is the cost.  Will my insurance pay for this?

Now that I'm not working my Dog Sitting Business I have no income for extras.  I'm so sorry I cancelled my booked jobs.  I'm now out about $500 and have surely lost one of my best customers who has found someone else to care for his dogs.  Just when I was expecting to double my income from last year I probably won't even match it now.

I have an appointment in 2 days to get the results of the blood work for Autoimmune Disease.  If only it could be that simple.  I know it's not.

COURSE OF ACTION DECISION MADE - DAY 17

Had an appointment with ENT Dr. Beyer today.  This appointment was to be when we would decide the next course of action.  He first checked my lymph node and said jokingly, "Where is it?"  He didn't feel it.  I still feel it as the size of a small marble.

He looked at my surgery area and my throat is healing slowly but well.  He then wanted to look with the scope through my nose down my throat at the ulcer using the flexible endoscopic camera.  Said it looks the same... no change.  He said he could remove the lymph node and also do another biopsy of the ulcer.  I asked a few questions and we discussed the procedures.

That's when he decided to go ahead with the blood work to rule out an Autoimmune Disease and scheduled another appointment for next week.  He really seems to think that is what I have.  I do not agree and feel we are wasting time.  If it is cancer it is growing and time is precious.  We need to start treatment as soon as possible.  I understand that I have to heal a bit more from the tonsillectomy before another surgery, so I agreed to the blood work.

Was sent to the out patient lab at Terrebonne General Hospital and they took 5 vials of blood for the following tests:

-- Anti-Nuclear Ab (ANA)
-- CBC with Differential
-- Cat Scratch Disease Panel
-- C-Reactive Protein
-- Sedimentation Rate (ESR)
-- Sjogrens Ab

If they are negative, there is a strong possibility that it is cancer and I will request another biopsy.

To top it all off, I have an infected boil on my butt.  This is the second boil I've had in the last few months.  Never had one in my life.  How can this be when I'm on so much antibiotic?  Am keeping it clean and with antibiotic ointment.    

According to WEBMD, you should seek medical attention if:

• You have a heart murmur, diabetes, any problem with your immune system, or use immune suppressing drugs (for example, corticosteroids or chemotherapy) and you develop a boil.

I just completed a week of prednisone - a steroid - to help shrink my lymph node - which it did.  I am a diabetic.  Do I also have a problem with my immune system?  Is that why I'm getting these boils?

I am still feeling weak and shaky.  All I want to do is sleep.  I tried eating more protein but it upset my stomach and I had terrible cramps.  So I'm back on soups.  My throat doesn't hurt but I still feel the lump at the base of my tongue.  This is very upsetting.  Going to go to sleep now.

DAY 14 - THE NIGHTS ARE THE WORST

PureGuardian? H920BL 10-Hour Ultrasonic Cool Mist Humidifier, Table Top

Feeling stronger and eating is easier.  Still have some discomfort in my throat but can manage without pain meds.

The nights are the worse.  I tried sleeping in my bed upstairs for the first time in 2 weeks - but am awake every hour with pain in my ear and throat.  I purchased another cool air mist machine but it does not blow wet air - just cool air.  There's a big difference.  Returned it today and ordered another mister like my original one -  online.  It will be here in 3 days.  I'll leave that one in my bedroom and keep the one downstairs by the sofa for day use.  It amazes me that the wet mist can actually stop the pain in my throat.  Very pleased with that.  

I see the doctor in 2 days.

A LITTLE GOOD... A LITTLE BAD... DAY 12

This is where we were a year ago today.

Yesterday was a mix of good and bad.  I slept only 2 hours the night before and just didn't know why.  I was feeling weak and once I looked into my throat realized why.  I now had white sores all over my mouth and on my tongue.  Too much steroids.  Called the doctor and asked to discontinue but he insisted I continue and sent in an order for some medication for oral thrush at my pharmacy.  It's only one pill and should take care of the problem.  I only have two more days of antibiotics left to take.  I started gargling more with baking soda and salt and this morning the sores are almost all gone.  The surgery site still is covered in white but is a lot less so I guess I'm sloughing off the scabs.

Last night I took a whole Xanax and slept all night with of course many visits to the bathroom to pee.  Feeling better today.  My strength is coming back.  I also started eating more than just mashed potatoes and broth.  I cooked some rice and gravy with smothered pork chops that I cut into tiny pieces.  That tasted soooo good.  I was so hungry.  I don't think I was getting enough protein.  My fault.

I needed more supplies from the store but didn't want to bother my neighbor Evelyn who isn't feeling well, so decided to drive myself.  I was feeling weak and shaky but I made it.  Then later in the day I had to return to pick up the meds my doctor had called in for the oral thrush.  I'm confident that I will be able to drive myself to my next doctor's appointment on the 22nd.

And to top everything off... I cut my grass in my back yard.  It was taller than my little Shih Tzus so I had to do it.  It was rough as I had to stop and start many times as I was out of breath but I did it.

My friend Pat came by to visit and gave me a nice back rub.  He only stayed for a short while but I was glad he came by.  My neighbor Carolyn and her dog Prince also stopped by for a visit and we walked our dogs outside for a while.

So that was my day.   Day 12.

SOME POSITIVE WORDS FROM DOCTOR DURING VISIT - DAY 10

My neighbor Evelyn took me to another doctor's appointment today at 1:00pm.  I asked a lot of questions and got some more specific answers which were still not verified by test results.  My removed left tonsil did not have any cancer cells in it.  That was great to hear from him.

He is still curious about a possible Autoimmune Disease lurking somewhere and will want to eventually run blood tests when I'm healed from this tonsilectomy.  I spent some time explaining to him everything I went through with the dentist starting back in July 2016.  He showed some interest in that info.  I also signed permission for him to obtain blood work results from my Family doctor Haydel.

Wants to see me in a week at which time we will decide the next course of action.  He made me real happy and relieved when he suggested another needle biopsy of the left lymph node.  I will be awake for this one.  It has shrunk a great deal but could balloon out again when I finish the steroid meds in two days.  If it is a tumor it is on the base of my tongue and in my lymph node and not in my tonsil.  The next biopsy should show something more than the first one.  My gut still tells me it is Squamous Cell Carcinoma. just like Dad had.

Radiation, Chemo, and possible surgery to come.

I'm feeling stronger and eating more.  My ear does not hurt as bad and am taking less pain meds.  I should be a lot stronger when I see him again next week.

Evelyn went to the grocery store for me and I now have more broth and potatoes and pudding cups.  That's what I've been living on for the last 10 days.  She also went to the Chinese place to get me some Won Ton Soup.  That was so good.

Can't thank her enough.  Sent her a gift basket.  She was surprised and loves it.

PROGRESSION OF EVENTS - DAY 7

AMOXICILLIN COULD BE 

THE CAUSE OF ALL MY PROBLEMS 

July 20th, 2016 - dentist prescribed Amoxicillin for 3 weeks prior to removal of infected tooth.  I felt that was too long a time to be on an antibiotic.  Within days I had a severe yeast infection.

August 2016 - still having problems with yeast infection.  Dentist told me to purchase some probiotics from the pharmacy.  They did not help.

September 2016 - yeast infection and rash spreading all over genital area.  Dentist prescribed meds.  Did not get rid of problem.

Went to Family doctor who prescribed meds that cleared up yeast.  Used over the counter ointment for rash.  

October 2016 returned to dentist and asked why I was told to take so much Amoxicillin.  No response.  No apology.

November 2016 last dentist appointment for fitting of bottom partial. Have not been back.

December 2016 still healing from severe rash that covered large area including anus, down the tops of my legs.  It felt like second degree burns.

______________________________________________________


January 20, 2017 - found lump on left lymph node.  Family doctor Haydel prescribed more Amoxicillin.  Again I got a yeast infection that I treated with over the counter meds that cleared it up.  Discontinued Amoxicillin and will no longer take that medicine.

February 6, 2017 - returned to Family doctor to inform that antibiotic was not reducing the lymph node.  He recommended a CAT Scan scheduled for February 9th.  Referred me to ENT Dr. Beyer.

February 22, 2017 had appointment with ENT doctor.  He looked at my CAT Scan and then down my throat with light and saw an ulcer at the base of my tongue.

Scheduled biopsy of ulcer, lymph node, and removal of left tonsil for March 6, 2017 at Gulf Coast Surgery Center. 

March 9th back to Dr. Beyer due to running a fever of 101.  Gave antibiotic liquid and Steroid liquid for inflammation.

March 11th back for checkup with Dr. Beyer and he informed me that the ulcer was not a tumor and that the results of biopsy were "Inconclusive".  Wants to run more blood work.  Mentioned Autoimmune Syndrome as possible cause.  (I don't agree) 

If it is an Autoimmune Disease  - the high doses of antibiotic could have had something to do with my symptoms.  I want another biopsy done, a larger portion of tissue to see if anything was missed.

Could be something called Serum Sickness (immune system overreaction to injected proteins such as those found in cephalosporins, penicillins, or sulfonamides)


Examples of conditions related to generalized ( disease of the lymph nodes) Lymph node enlargement is recognized as a common sign of infectious, autoimmune, or malignant disease.

Epstein-Barr virus (herpes virus that causes infectious mononucleosis and is associated with certain types of cancers)

Toxoplasmosis (parasitic disease acquired from contact with cats or their feces or with raw or undercooked meat) - I have 3 cats

Serum sickness (immune system overreaction to injected proteins such as those found in cephalosporins, penicillins, or sulfonamides)


Next appointment scheduled for March 15th.

ANOTHER DOCTOR APPOINTMENT - DAY 6

My friend Evelyn drove me to my clinic appointment today at 9:00am.  I was given some antibiotic meds to help with the infection and am to continue to take the cortisone for inflammation.  I asked the doctor if he had taken a large amount of fluid from the lymph node as it is now half the size as it was prior to surgery.  He explained that he only took a very small amount of tissue from the node as well as from the ulcer on my tongue.  He thinks that the cortisone is reducing the node.  

I again asked him what he saw when he was down my throat with the light and he said that it looked like an ulcer.  I asked if it was a tumor and he said no it was not.  I asked if there would be any further reports of the biopsies and he said no.  He wants to do some more blood work that might show signs of an autoimmune disease syndrome.  He gave me a few examples like Lupus, and Rheumatoid Arthritis but explained that there were many other things it could be.     

• Most Doctors believe that lupus results from both genetic and environmental stimuli.
• Risk factors include exposure to sunlight, certain prescription medications, infection with Epstein-Barr virus, and exposure to certain chemicals.
• Environmental factors include extreme stress, exposure to ultraviolet light, smoking, some medications and antibiotics, infections and the Epstein-Barr virus (in children).
• Although there is no cure, lupus and its symptoms can be controlled with medication.

Environmental elements that may trigger lupus include

• Penicillin or other antibiotic drugs: amoxicillin (Amoxil); ampicillin (Ampicillin Sodium ADD-Vantage); cloxacillin (Cloxapen)
• Infections - including the effects of Epstein-Barr virus
• Cold or a viral illness
• Exhaustion
• Injury
• Emotional stress, such as divorce, illness, death in the family or other life complications
• Anything else that causes stress to the body such as surgery, physical harm, pregnancy or giving birth

Infections that most commonly affect people with lupus include urinary tract infections, respiratory infections, yeast infections, salmonella, herpes and shingles.


Other autoimmune diseases:
Hashimoto’s Thyroiditis, Sjögren’s Syndrome, Rheumatoid Arthritis, MS, Celiac Disease, Type 1 Diabetes, etc.

1. A Trigger – This is an enormous list. Let me just list off a few and you can think about your own life. A trigger can be anything that moves the process forward. Possible triggers include gluten, dairy, stress, blood sugar issues, genetically modified foods, pesticides, herbicides, insecticides, heavy metals, chronic toxin exposure, viruses, infections, BPA in plastic, alcohol, prescription medications, and mold exposure.

I could  not find any info on base of tongue ulcer and lymph node enlargement in reference to Autoimmune Disease.

HAD FEVER - DAY 3 and 4

Not a good day yesterday.  Started running a fever of 101 and felt really awful.  Called the doctor's office and made appointment for the afternoon at 3:00pm.  He gave me some meds for infection and my friend Evelyn went to the pharmacy to get it filled.  I have not had any fever since taking the meds but my ear still hurts pretty bad.  The only thing that helps is double doses of the Hydrocodone.  However, if I keep taking double doses I will run out soon and the doctor hesitated to give me a refill when I asked.  Instead he wants to see me again in on Saturday at 9:00am. 

Been having trouble with bladder control since the surgery.  It first happened in the surgery clinic.  Then last night I urinated all over my bed and on the floor as I tried to get to the bathroom.  I have lost control of my bladder.  I'm now wearing a diaper I made of doggie potty pads that I had on hand and also put one on my bed.  I took a Xanax last night in order to sleep so doing that may have relaxed me and added to my bladder problem.  I had not slept since Sunday night and 2 nights without sleep was taking its toll on my emotional well being.  Starting having heart palpitations.  The Xanax always helps with the mitral valve problem I have.

Today I cut the dose of pain meds back down due to fear of not getting any further refills from my doctor.  Sad situation when druggies on the street can get drugs like this but patients who really need it have a hard time convincing their doctor of this fact.

Just took a half a Xanax in order to get a little bit of sleep tonight.  I'm so tired.  I cried for the first time today.  Just so tired of all the pain.

My neighbor Evelyn made me a delicious broth today.  I ate some spoonfuls with my mashed potatoes.  That's the only thing I feel like eating.  I do also enjoy cold Tapioca pudding cups.

My doctor told me that the results of my biopsy were inconclusive and that he was going to run some more blood tests on me as soon as I was healed from the recent surgery.

I came home and Googled inconclusive biopsy tests and it does not mean that there is no cancer.  It probably just means that there was not a large enough biopsy taken.  I will be asking a lot of questions tomorrow.

PAINFUL DAY - PAINFUL EARACHE - DAY 3

I called Dr. Byer's office and asked if it was safe to take my blood pressure pill as well as my Xanax in order to help me sleep.  The Hydrocodone pain meds have always made me speed.  He said yes.  I immediately coated a Xanax pill with butter to ensure it would go down easy and tilted my head to the right side and swallowed with water.  I did get some sleep last night but it was restless and only in spurts of about 15 minutes and half an hour at a time.

My friend Sylvia left this morning to return home and I was alone all day.  I made some more mashed potatoes and opened a can of beef broth and snacked on that all day between medications.  Took another Xanax and slept on and off all day.  My pain meds don't last till the next dose in 4 hours so I started to take a half a dose every 2 hours.  Still not enough.  The pain meds are not giving the relief I had expected.  The throat pain is pretty bad but the earache on the same side is horrible.  I placed a call to Dr. Beyer's office and asked if I could increase the pain meds.  He said I could double the 15ml to 30ml every 4 hours.  Also advised to use earache drops in left ear.

I found some drops in my bathroom and put 3 drops in my ear and placed a piece of cotton as well.  Took another dose of pain meds and laid down on the sofa.  Soon I felt immediate relief in my ear.  Taking this amount of meds will empty the bottle pretty quickly so I'll have to make sure I get a refill before the weekend.

My friend Jeff texted me today to check on me.  Neighbor Evelyn came by this afternoon and Carolyn called to see if I needed anything.  Thanks to all of them for caring.  I had made sure I had enough supplies before the surgery so I'm doing fine in the food and drink department.

My little doggies have slept by me all day on the sofa.  They are acting strange and seem to know something is not right.  I have been sleeping on the living room sofa as it it close to all the meds and ice I need during the night.  It's comfortable and I am leaving the front door unlocked so friends can come and go to check on me.

I finally got the courage to look in the mirror at my throat.  The left side is covered in what looks like white pus.  It sure hurts to swallow.

I'm hoping to sleep better tonight due to the increase in medication dosage.  Looking forward to day 4 and more relief.

Finally figured out what I was doing wrong with the cool mist humidifier.  I was filling the wrong water hole.  Now that I know how to work it, it will provide cool mist for hours instead of minutes.  It sure feels good on my face and throat.

CAN'T SLEEP - DAY 2

Had a bad night.  Took my last pain meds at 1:00am and tried to fall asleep but the meds make me speed and my mind races.  In the past I have taken Xanax to sleep but can't swallow any pills just yet.  Tried to lay still and didn't take any more meds during the night to see if I could sleep but I couldn't.  Finally took another dose at 7:00am this morning and ate a small pudding cup.  It felt sticky in my throat so drank a lot of water with it.  Will have some soup later today.

The cool mist humidifier I purchased works well to keep my throat moist.  It is a small unit and needs refilling every 15 minutes or so - which is a hassle.

It was so nice to have a friend here with me last night.  It's a bit scary to think that there is a chance of bleeding for the next 2 weeks and I'll be alone during that time.

WELL... I'M STILL HERE - DAY 1

Made it through the surgery.  My blood pressure was 191/87.  Was extremely anxious prior to entering the operating room.  Then I was given something to relax me.  However, my anxiety level was so high that I barely felt it.  Within a few minutes I was put under general anesthesia.  Wish they would have given me the relaxant an hour before while I was waiting for the doctor.

After the surgery, that lasted a little less than an hour, my doctor informed my friend Evelyn of some encouraging information.  He said that it was not as bad as he had thought.  I'll find out more when I see him on March 15th.  Until then, I will be following diet instructions.  Today I only had popsicles and snow ice.  Was so hungry by 10:00pm that I opened a can of chicken broth and had a few spoonfuls at room temperature.  Felt so good.  Tomorrow I'll be able to eat some pudding and mashed potatoes.  Looking forward to that.

My friend Evelyn had to run all over town in order to get my liquid hydrocodone prescription filled.  No one seemed to have it on hand.  She finally found it at the pharmacy at Target.  I sure hope they have a large supply as the bottle is already almost half gone and it's only day one.  I'm taking my pain liquid every 4 hours and it wears off by the 3rd hour but I make it to 4.

My friend Sylvia has been here with me all day and will be going home tomorrow around noon.  It is good to have someone here tonight as I am still very anxious.

PRODUCTIVE DAY

Washed all my bedding today.  Finished painting the deck.  It will still need a second coat but looks good for now.  Bathed the dogs... they really needed it.  Ordered Chinese food and enjoyed my favorites.  Feel like I accomplished a lot today.  

Tonight I am on Facebook reading posts from Throat Cancer patients and learning how to deal with what is to come.  I've made notes on several sheets of paper for the last few days and now have typed all the info in categories of:   Musousitis, Dry Mouth, Nausea, Skin Burns, Protein, Pain Management, Supplements, and Muscle Exercises.  There is so much to remember.

My Monday morning surgery is weighing heavy on my mind today.  Haven't taken any Xanax the last couple of days but I am getting more anxious so will take one tonight and tomorrow.   

My folder of important papers is on my desk which contains my Will and house and car papers.  Just in case something goes wrong.

I have filled my refrigerator with various types of protein drinks and have ice cream, popsicles, jello, cottage cheese, broth, oatmeal, pudding and mashed potato supplies.  

I guess I'm as ready as I'll ever be.  

SECULAR SUPPORT

After days of searching the Internet, I have finally found a few Secular Support Groups for Cancer patients.  What a relief.  It is very uplifting to read the posts of people living with cancer and no gods.

Living in south Louisiana is like living on some alien planet.  Everyone, and I mean everyone, is religious, especially Catholics.  No one to relate to, no one to confide in.

Although I would like to have a face to face encounter with a Secular Support Group, I'll settle for online for now.

FEELING ALONE

Had my hair cut short today.  I really like the look.  It will be much easier to care for during the next few weeks.  Told my hairdresser Sondra all about the recent events and she offered her help if I ever need it.  That was kind of her.  She hugged me when I left and we both fought back tears.  I've known her for about 20 years.

Took my little doggies to the Vet today to get their nails trimmed as well as other things that were due.

My last dog sitting job left today at 5:00.  Don't know when I'll be able to schedule any more jobs for some months to come.  It was hard to cope with the duties of caring for the dogs.  I'm feeling imobile.  My anxiety level is high and I prefer to be alone most of the time.    However, I do get to where I'm sad that I have no one here to comfort me.

Am I a fighter?  I don’t honestly think so.  I feel you need to be really mad to be a good fighter and I am not yet mad as I am still numb from shock, disappointed, deeply concerned, depressed, and just simply “out there” by myself.  

I know that there really isn’t time to be truly scared and to worry excessively.  The time during this journey of overcoming and healing needs to be spent on positive and enriching thoughts of what tomorrow may bring.  I need to work on that so I'm taking this pledge.