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Tuesday, May 30, 2017

DENTAL TRAYS APPOINTMENT

Went to my dental appointment during a terrible thunderstorm.  Hoping I don't get a sore throat which I do everytime I go out in the rain and get wet.  

I brought along my trays from my whitening kit and asked if I could use them instead of having a new set made.  The dentist looked at how they fit my teeth and said yes I could use them.  He gave me some special toothpaste to use and ordered the Fluoride that I will pick up next week.  This visit was $50 as  opposed to the $225 that I would have had to pay for the Fluoride trays.  Very happy about that.


For the last two days I have been feeling a pain in my throat on the left side but not on my tongue.  It feels like it is behind and up from where my tonsil was removed.  Could the cancer be spreading?

I'll have the PEG in two days and then after the weekend I'll have the radiation mask fitted with a practice run-through.  I've read that the treatments begin right away.  I should be through with the 7 weeks of treatment the first week of August - just in time for my 70th birthday on the second.  However, the rads still cook you for a month or so afterwards so I'll be sick for weeks after treatment.... but no more mask and rads.  That's a good thing.


  

Monday, May 29, 2017

PRE OP APPOINTMENT

Had appointment for Pre Op today at 1:00 at the Outpatient Pavilion.  The nurse went over all my surgeries, meds, ailments, etc.  Was told not to take my blood pressure meds or diabetic meds the morning of surgery.  Can take Xanax.  Good, cause I'm going to need it.

Also had an EKG.  I was given two packs of antibacterial scrubs to wash my stomach area with the night before and in the morning as well.  I am to leave it on for five minutes then rinse off.  No blood work.   All this took 2 hours.  

They will call me the day before the surgery on Thursday to let me know what time to arrive at the Outpatient Pavilion.

The Cancer Center called me today to schedule my radiation mask fitting.  They wanted me to go in on Friday, the day after my PEG tube surgery.  I declined and they said they would call back on Monday.  There's no way I can go through that while my belly is still sore from surgery and I'm still on pain meds.







Friday, May 26, 2017

ESTATE PLANNING

Filled out forms today to take to the attorney.  Completed the Living Will, Medical Power of Attorney, and Durable General Power of Attorney.  Now I have to get my son and I to sign in front of an attorney and have signatures of witnesses.  That's one less thing to worry about in estate planning.  My son will need to sign the 2 forms for Power of Attorney in order to access my financial accounts to keep up insurance payments on the house after my death and even prior to my death if I become incapacitated.

Still have to meet my son at the bank in order for him to sign a "Signature Authority" on my checking accounts and a "Payable Upon Death" provision to my stock accounts.  That is going to be a problem as he feels it is too difficult to come here to my bank due to his job.  I offered to go to Baton Rouge to do the signing but now I will be scheduled nearly every day for some type of procedure and then Radiation treatment begins.  I will not be able to go to him - he will have to come here.  If he does not complete all of these signatures prior to my passing, he will have to go to court to access my money after my death.  I may have to assign someone else to be Power of Attorney for my estate.

Filled out an application to become a member of Acadian Ambulance Service.  The fee is $67 yearly.  I just may need this transportation if I fall ill in the middle of the night due to dehydration from throwing up.  This is a serious condition and needs immediate attention.




Thursday, May 25, 2017

MEMORIAL SERVICE COST

TGMC called this morning to inform me that my upcoming procedure will require a $275 copayment.  Then the dentist sent me a text informing me that my upcoming procedure will require a payment of $225.

Later the Funeral Home called to set up an appointment for me to come in and complete the contract.  I met with a nice lady who explained some things that the other gentleman had not on my previous visit.  He also had not quoted me the correct price of my policy.  She asked if I wanted flowers.  After giving it some thought, I decided to go ahead and purchase the cheapest flowers for my own Memorial Service at a cost of $150.   That is really strange.  

She also added the cost of the obit in the local newspaper which is also $150.  So the grand total is now $2895.  I paid her $1500 and will be paying $78.00 a month for the remainder of the cost.  I plan on paying $100 a month till it is paid off.  If I pay off earlier I will get a discount.

 A worker from the Council on Aging also came to my house to do the necessary intake for me to get transportation services to the cancer center for my medical treatments.  I am so relieved that I won't have to drive myself.

It has been a busy day.





Wednesday, May 24, 2017

JUNE 1ST PEG TUBE SURGERY SCHEDULED

Saw Dr. Pellegrin today.  We talked about my colonoscopy and I informed him about the problems I had with the meds he gave me.  We agreed that I don't need to take any more meds.

He then explained in detail how the upcoming PEG tube surgery would be performed.  I will be sore and he will be giving me meds for pain.  I am to flush the tube with water daily and when I start radiation therapy the nurses will show me how to care for it as I use it to feed myself when I can no longer swallow.  

I then was scheduled for surgery at the TGMC Out Patient Pavilion on June 1st.  They will call me the day before to tell me what time to be at the Pavilion.  I am scheduled for Pre Op on May 29th at 1:00pm at the Short Stay Clinic.   

It is recommended that someone stay with me afterwards as well as that night.  My friend Evelyn will be taking me to the Pavilion and my Friend Sylvia will be staying with me overnight.

When I left the clinic I drove to the Funeral Home and submitted my completed packet of information.  I was told someone would be calling me to complete the intake process.

Tuesday, May 23, 2017

APPOINTMENT TO SEE GASTRO DOCTOR FOR PEG TUBE PROCEDURE

Called the Council on Aging today and asked about Medical Transportation.  They asked a few questions and then said that I do qualify.  Someone will be coming to my home to take an application, and they will call first.  I'm also going to ask for meals on wheels for the first few weeks of treatment then I will be using the tube for feeding.  I will also ask for home health services. 

Gastrointerologist Dr. Pellegrin's office called today to schedule me for the PEG tube operation.  I have an appointment for tomorrow to speak with him and fill out paperwork and then to schedule the procedure.

From what I've read, I won't be able to swallow food towards the last few weeks of radiation and will need to use the stomach tube.  I remember my dad using the PEG tube toward the end of his life.  My mom and I would sit with him on my sofa and make it a social event. It seemed to please him.  That was in 1989.


Monday, May 22, 2017

FUNERAL POLICY

Had my stitches removed today.  Afterwards, I talked to my dentist about Fluoride Treatment.  He said he called my Radiation Oncologist but could not reach him.  He explained that I would have to have impressions made and then they would make my dental trays.  I am to do the treatment twice a day during my course of Radiation Treatment.  He made me an appointment for a week from today.  My mouth is still sore from the surgery and root canal performed last week.  I'm also still on the antibiotic.  He cleared me for Radiation Treatment.

When I left his office I drove to the Chauvin Funeral Home.  I've been  planning for a long time now to make arrangements for my funeral - even before all of this cancer started.  So I was given a booklet to fill out information and the gentleman explained the prices to me.

Here is the list and prices:
- Direct Cremation =   $1500
- Crematory =                $595
- Permit from Coroner = $75
- Memorial Service =    $395
- Death Certificates =      $30
_________________________________
TOTAL                        $2585


I told him I had a will and I have written my own obit.  I have written my wishes as to how I want my memorial service to go as well as how I want my ashes spread.  He told me to put that all in my will.  So I will take it to my lawyer and have that done in a week or so.  I also made a list of friends that I want contacted and invited to attend the Memorial Service.

I felt good when I left the funeral home.  It was a sense that I felt I was getting one more thing accomplished that my son won't have to worry about.  I still have to get a Durable Power of Attorney and Medical Power of Attorney done as well as put my son's Signature Authority on all my financial accounts as well as a Payable Upon Death provision to stock accounts.  I'll also complete a Living Will.  These are things that we all have to do in life - eventually - so why not now.  

And here's a little something I put together just for fun.






Saturday, May 20, 2017

SCARY THOUGHTS HAVE CROSSED MY MIND

Had a bad reaction to the Bentle medication given to me by the Gastro doctor for Irritable Bowel Syndrome.  Severe constipation, bloating, and stomach pain started yesterday and has eased up some today.  Last night the pain was really awful.  I put a heating pad on my abdomen and tried to sleep but didn't get much.  

At first I didn't know if it was the Bentle or the antibiotic Clindamycin given me by the dentist that was causing this pain as they both have the same side effects.  So today I didn't take either one.  My abdomen is sore like I have been punched in the gut.  Still bloated and constipated.  Last night I took 2 stool softeners and had a little relief today with a few small bowel movements but still not normal.

On top of all this I'm experiencing some emotional distress.  After reading more information online I came across some medical journals that gave percentage of survival rates for my type of cancer and it is less than I originally thought.  One site stated 60 to 80% 5 year survival rate.  I thought it was 80 to 90%.  I'm not a gambler so to me it is just a death sentence either way. 

So I've been down all day and my spirits have plummeted to an all time low.  I have no energy to care for myself or get dressed and go out to walk the dogs.  All I want to do is sleep.  Scary thoughts have crossed my mind.  Do I really want to go through this treatment hell and die a couple of years later anyway?  Why go through all that pain?  

The side effects of Radiation Therapy are horrible.  Living alone I will have no one to help me in the middle of the night when I'm sick and throwing up.  Who will help me prepare nourishment for me or assist with tube feeding.  I just don't think I can do this alone.  I may not have the strength. 

I'm so scared.




Thursday, May 18, 2017

I'M NOT A STAGE II - I AM A STAGE III

I took the opportunity to discuss my concerns with my ENT doctor today.  Showed him the info I printed from the National Cancer Institute's website.  Once he read the info he left the room and placed a call to the Radiation Oncologist.  When he returned he said to me that I was correct.  I am in Stage III.

Stage II - Tumor is between 2 and 4 centimeters (from ¾ to 1½ inches).  Tumor has not spread to lymph nodes or other parts of the body

Stage III squamous cell carcinoma: The cancer has spread into facial bones or 1 nearby lymph node, but not to other organs.

For most (but not all) cancers of the head and neck, having cancer spread to the lymph nodes automatically puts your cancer into at least stage III. 

We talked for a good while and then I made another appointment with him as well as paid my co-payment.

I left his office and went directly to my next appointment with the Radiation Oncologist Dr. Long.  He showed me the NCCN Guidelines for Cancer of the Oropharynx and treatment protocol.  I guess he knows I'm the kind of person who needs proof.  Didn't want to piss him off so I didn't rub it in that I had to correct the Stage II to Stage III diagnosis.  My "Team" let me down already and we haven't even started yet.

He then looked down my throat with the scope.  He sure could use some tips from my ENT doctor.  He sprayed the side of  my face with the deadening spray twice with very little going into my throat.  I've had that procedure done by my ENT twice and never felt the tube in my throat.  This time I did and I started to gag and cough.  At one point, I grabbed his had to move it away from my face.  Very unpleasant.  He said later that he would use more throat deadening spray next time.  Not sure there will be a next time.  I will ask if my ENT can do all scopes in the future.

Then he showed me a sample radiation mask.  Asked  if I was claustrophobic and I said yes.  I held it and placed it over my face.  I asked if the eyes would be cut out.  No answer.  I asked if my eyes would be open and he said yes.  However, there is no way that I will be able to open my eyes unless the mask is cut around the eyes.  I told him that I was taking .5 Xanax and he said I may have to double that dose.

He then gave a very long, and informative explanation of what to expect during and after radiation treatment.  I was very familiar with all he said as I have been reading online for months now.  He said that I will receive radiation on both sides of my neck, which surprised me.  

So the next thing is to receive calls with instructions as to who will see me next.  I will be seeing a dentist for Fluoride treatment.  I will see the Gastro doctor to have the PEG feeding tube put in.  Then I will be fitted for the mask.  Treatment will begin right after.  I will have 35 Radiation treatments in 7 weeks time.

The ball is rolling now.




Wednesday, May 17, 2017

PET SCAN RESULTS

Met with the Medical Oncologist Dr. McGaw today for the results of the PET scan.  He stated that since I had refused surgery, I would only need to be treated with Radiation and no Chemotherapy.  I asked what stage I was in and he looked through his notes and said Stage 2.  I questioned why only Radiation and he replied that he was surprised at that determination as well.  He explained that they had to follow the particular protocol as per my PET scan results.  He said there would be no further follow up with his office.  I did not have a sense of relief as I expected I would have given these results.  I am worried that Radiation will not be enough.  

He asked if I wanted to see the PET scan and I said yes.  He showed me that the cancer shows up black on the scan and pointed to two large areas in my neck.  Then he showed me a small black dot under my arm.  He made a phone call to someone and asked what that dot was.  He then said it was probably just arthritis and not cancer.  Humm, how sure is he of that I wonder?

I see the Radiation Oncologist tomorrow and will ask more questions at that time.  I also have an appointment with the ENT Dr. Beyer tomorrow before seeing the Oncologist.  

I'm confused about my plan of care.  It reminds me of the treatment my father received 30 years ago for the same thing I have.  He only received Radiation and was dead 2 years later.



Tuesday, May 16, 2017

PET SCAN TODAY

First time having a PET scan.  No food or drink after midnight.  Procedure scheduled for 10:30am.  I was taken into the billing office and paid my co-payment of $225.00.

I was then taken into a small room with a lounge chair that reclined.  IV was started and then the radioactive drug was injected.  This took only a few minutes then the IV was removed.  They turned the bright lights off and left a small lamp on and left me alone in that room for an hour.  I was monitored by a camera and given an emergency button to press if I needed anything -  which I did towards the end of the hour.  I asked for a bathroom break.

After the hour passed I was taken into the room where the large PET scan machine was.  Positron Emission Tomography are (PET-CT) Scans.   However, you may hear your doctor refer to this procedure just as a PET scan which is one way to find cancer and learn its stage. Stage is a way to describe where the cancer is, if it has spread, and if it is changing how your organs work.   A PET scan uses a radioactive drug (tracer) to show this activity. The tracer may be injected, swallowed or inhaled, depending on which organ or tissue is being studied by the PET scan.  In my case it was injected.

Reclined on my back on the table, placed my hands over my head, was covered with a blanket and the procedure began.  I had taken a whole .5 Xanax and hoped it would kick in about this time.  I didn't want to see my body roll into that machine so kept my eyes closed through the whole 20 minutes.  I could sense when I was completely inside and when I was partially inside but it was less frightening with my eyes closed.  After the procedure I was taken home by my neighbor Evelyn.  


Slept on and off the rest of the day.  I'm still recouping from a dental procedure I had yesterday.  Went in for a scheduled root canal but the dentist found a piece of bone that needed to be removed.  He had to cut into my gum to get at it and it took a few tries to remove it and several stitches to close the wound.  I was given antibiotics and pain pills.  It still hurts pretty bad today.

Tomorrow I meet with my Medical Oncologist to get the results of the PET scan.


  

Friday, May 12, 2017

COLONOSCOPY PREP IS A BITCH


Started fasting yesterday morning.  Only able to have liquids till midnight - then nothing till after procedure.  The liquid I had to drink to cleanse the colon was so horrible I could barely keep it down.  I gagged every time I had to drink it.  Sixteen ounces then two 16 ounces of water at 4:00pm.  Then repeat again at 9:00pm. 

All I had to eat all day was two cups of soup broth.  Went to the bathroom so many times I lost count.  At 11:00pm I had a popsicle then went to bed.  Slept all night till the alarm woke me.  More bathroom visits.  My neighbor Evelyn picked me up at 8:30 and took me to the Gastro clinic.

I was taken in right away and prepped for the procedure.  I had taken my blood pressure pill along with a half of a .5 Xanax but neither one helped very much.  My blood pressure was 191/90. 

They started an IV and within minutes the tech with the large hypodermic needle was there and promised me the "best nap I ever had" into my IV.  I remember feeling the drug enter my body and within seconds I was out.  Woke up feeling great. 

Dr. Pellegrin came in and showed me photos of my colon and said no abnormalities except for Diverticulosis.  Explained that I was having spasms and that is what caused the pain in my left side.  Gave me script for Bentyl (for Irritable Bowel Syndrome) and Tagamet.   

Then I dressed and Evelyn and her husband Robert took me to IHOP for breakfast.  And boy did I eat.  I was so hungry that I over did it and about an hour later I was back on the toilet.  

Feeling ok now.  Have two days to rest up and then it's to the dentist for a root canal on Monday. Oh joy!



Thursday, May 11, 2017

MEETING DR. LONG

Had appointment with the Radiation Oncologist Dr. Long today.  Very personable.  Went over my history.  He was going to look down my throat with the scope but decided not to do it today.  He stressed the importance of the PET scan and said it will show him exactly where the treatment will be directed.

He then gave me an exam where he felt around my neck and inside my mouth.  I asked a lot of questions and he gave a lot of answers.  He doesn't feel I will need surgery.  He also doesn't feel that I am at a stage 4.  However, he won't know any of this for sure until after the PET scan.


Wednesday, May 10, 2017

MEETING DR. MCGAW

Had my first meeting with my Oncologist Dr. McGaw today.  I asked a lot of questions and he talked with me for a long time.  He examined my neck as well as my abdomen as I told him about the pain I was having in that area.  

We discussed the options for treatment and I expressed my desire to not have surgery but to start with chemo and radiation.   He stated that he wants to start with a PET Scan to which I agreed.  He wants to consult with the Oral Surgeon Dr. Sall, Radiation Oncologist Dr. Long, as well as my ENT Dr. Beyer.  They will decide what course of treatment I will have after reviewing the PET Scan. 

He does not feel that I am a candidate for surgery.  He also does not feel that I am in Stage 4.  We will soon find out.

He told me that there is a chance that my Humana insurance may not pay for the PET scan.  If they do not pay then I will have to have a full body CT Scan instead.

I then had a meeting with the Patient Navigator Vickie Boudreaux - LPN.  Walked me through the resources available to me and gave me a packet of information.  I asked for her assistance in getting a home health worker, a volunteer to drive me to and from my treatments, and Meals on Wheels.  These will be welcomed as I enter the final stage of treatment.  I explained that I live alone.   

Had some blood work done and then went home. 

Here is my team.


Dr. McGaw - Medical Oncologist


Dr. Long - Radiation Oncologist

Dr. Beyer - ENT


Vickie Boudreaux - LPN - Patient Navigator


Everyone was nice and pleasant and the facility is fairly new, only 6 years old.

Cancer fighting technology available at Mary Bird Perkins Cancer Center includes the Elekta linear accelerator, for fast, more accurate diagnosis; advanced intensity-modulated radiation therapy (IMRT) treatment capability; imageguided radiation therapy (IGRT) treatment capability; positron emission tomography and computed tomography (PET/CT) capabilities.  


This is not the scary part.  The mask is the scary part.





Tuesday, May 9, 2017

COLONOSCOPY SCHEDULED

Went into the Gastro office yesterday and was given instructions for the colonoscopy to be done on Friday May 12th.  I will get a call the day before to inform me of the time for me to be at the clinic.  My neighbor Evelyn will be going with me as I will not be able to drive myself home.

I have been having pain in my lower left abdomen for months now as well as bloody stool twice, and am worried that there is something there.  The CT Scan showed nothing in that area but something is wrong as I continue to have pain.  Had a mild episode of Diverticulitis yesterday and took a couple of Cipro pills that eventually eased the pain from the bacterial infection in the pouches.  I also took some pain medicine with Tylenol and slept well.  No pain today.

Tomorrow, May 10th, I see the Oncologist for the first time and the next day I see the Radiation Oncologist.   May 12th is the Colonoscopy.  May 15th I see the dentist for a root canal.  May 18th I see the ENT doctor again.  Lots of doctor visits yet still no treatment for the cancer that is eating me alive.

Friday, May 5, 2017

GASTRO CT SCAN RESULTS

Received a call from the Gastro office to inform me of the results of my CT Scan.  I have gall stones as well as Diverticulosis (which I already knew).  No inflammation at this time.  So Dr. Pellegrin wants to do a Colonoscopy.  An appointment was made for May 8th at 10:15 to be given instructions for the procedure.

Thursday, May 4, 2017

PATHOLOGY REPORTS

Went to the ENT office today to pick up copies of my Core Needle Biopsy report.  I was given the two reports as well as a full package of all notes by ENT doctor and other reports in my file.  Included was a CD of my first CT Scan ordered by Dr. Haydel.  Made an appointment to see ENT in two weeks as requested.

Came home and read the reports.  It is Squamous Cell Carcinoma as well as some positive Mesothelial cells.  I am also positive for HPV.  That's about all I can understand on the confusing medical reports.  I'm sure the Oncologist will explain in detail what I have.

Received a call from the Oncologist's office and was scheduled to see Dr. McGaw at Mary Bird Perkins Cancer Center on May 10th at 10:30am... finally.

Also received my first bill.  It was from Thibodaux Regional Medical Center and it was for $3,050.00 for the Core Needle Biopsy.  If it is determined that these services are not payable by my insurance I will be responsible.


Wednesday, May 3, 2017

ANOTHER CT SCAN TODAY - THIS TIME ABDOMEN

Had an appointment today for a CT Scan of lower abdomen at TGMC Radiology Center.  It went well.  I did feel a hot flash when they pushed the dye into my IV.  I let them know this and they assured me that it was normal.  I was anxious but the Xanax was doing it's job.  I then drove myself home.

Got a call from ENT Dr. Beyer this afternoon while I was out.  He left a message that the final biopsy report was in and that he would now be referring me to Dr. McGaw the Oncologist I requested at Mary Bird Perkins Cancer Center here in Houma.  I'll go by his office tomorrow to get copies of the reports.   

Tuesday, May 2, 2017

ANOTHER CT SCAN

Had an appointment with Dr. Pellegrin (Gastroenterologist) today. Told him I am still having pain in my intestine on the left side.  He ordered a CT Scan and blood work.  He said that if it is inflamed we would treat it and then do a Colonoscopy.  I have an appointment for tomorrow at 3:00 pm for the CT Scan.  I have to take pre-medication due to my allergy of the contrast they use.   I have to fast for 3 hours before the procedure.

Dr. Beyer's office called today and informed me that they will be going over my chart tomorrow and will call me with the second report of my biopsy.  This should tell me what kind of cancer it is and what stage. 

I'm petty sure it will be Squamous Cell Carcinoma stage 4.