THANKSGIVING DAY ATTEMPT AT EATING REAL FOOD

 There was so much food to sample today.  Tried some different foods at my brother's house but couldn't eat turkey or cranberries or cake.  Was able to eat a small piece of ham and about a teaspoon of sweet potato pie while washing it all down with a soda.  That was all I could do but am happy with that. I'm hoping that real food will be back in my life within the next few months. 

Enjoyed the visit with my brother and his wife and family.  Loved the two beautiful dogs they have.  Very well trained and easy to love.

Bob and me

Bob and Simone

Rusty and Charlie getting ham from Bob

It was so good to get out and had a nice long visit with family.

ONCOLOGIST APPOINTMENT - NO CANCER PRESENT

Had appointment with Oncologist today to go over PET scan results.  He was very pleased with the results.  I asked a couple of questions about the uptake and he explained that that was nothing to worry about as it happens.  The bottom line is that there is no old or new cancer present.

I told him about the area at the side of my tongue that feels like scar tissue and he examined it but assured me that he did not think it was a new cancer but to have my ENT doctor look at it at my next visit in 2 weeks.  I thanked him for everything he has done to help save my life and got an appointment for 6 weeks from now. 

I left the clinic feeling really good and also really hungry.  Decided to go to Taco Bell and try a soft taco and a crunchy one.  Took a bite of steak from the soft taco and had to spit it out.  Tried a bite of the soft meat in a regular taco and was able to swallow a couple of times but then had to spit out and gargle.  Also was able to drink half a cup of coke and ice cream.  Food still tastes bad.   But I did try.

THREE MONTH PET SCAN RESULTS

NM PET CT ROUTINE SKULL TO MID THIGH - Details

Impression

Resolution of previously demonstrated left vallecular and left cervical nodal hypermetabolic activity. No suspicious hypermetabolic activity is identified.

Electronically signed by: Jeremy Rau

Date: 11/17/17

Time: 16:07

Narrative

STUDY: RESTAGING PET/CT

HISTORY: History of malignant neoplasm of the left vallecula with cervical metastatic nodal disease

COMPARISON: Correlation previous PET/CT of 5/16/2017 and CT neck 10/20/2017

TECHNIQUE: PET/CT images were obtained from the skull to the mid thigh following the administration of 12.88 mCi of FDG intravenously. Blood glucose level at the time of the exam was 108 mg/dL. CT performed for attenuation correction and fused images obtained. Iterative reconstruction technique was used.

FINDINGS: Focal uptake is present in the region of the vocal cords without corresponding CT abnormality favored to be physiologic in nature. Previously demonstrated hypermetabolic activity at the left vallecula has resolved. The left cervical hypermetabolic lymph node is also no longer identified. Physiologic uptake is seen within the central nervous system, cardiovascular system, genitourinary tract, and GI system. No newly developed suspicious hypermetabolic foci.

Stable 2.3 cm nodule associated with right thyroid lobe without increased activity. Gastrostomy tube is in place. Numerous radiodense gallstones are identified. Significant sigmoid colon diverticulosis.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I was so relieved when I first read this report and shed a few tears of joy.  Then I read it a second time.  

I'm a little concerned about the uptake of the liquid radioactive material used to show the location of the cancer.  Focal uptake in the area of my vocal chord concerns me as I still have a raspy voice.  Also physiologic uptake with the central nervous system, cardiovascular system, genitourinary tract, and GI system concerns me.  I will ask about this at my upcoming visit with the Oncologist in two days.  Uptake usually means that the liquid radioactive material lit up on the scan in those places mentioned.  There is a possibility that this is a natural occurrence and means nothing serious.  Or it can mean cancer cells are present.

If this is nothing to worry about then I will be celebrating my victory against the monster by taking a trip in the RV with my little doggies.

TRIED EATING AGAIN TODAY

Opened a can of green beans and took a bite.  Was able to swallow the first bite but the second I had to spit it out and then gargle.  Tasted chemical.

Tried some chocolate ice cream and a taste of coke also.  Was able to ingest more of that than anything I have tried yet.  Still tasted chemical but not as bad.

Might try some soup later.

VERTIGO

Yesterday I had another episode of Vertigo.  Couldn't walk a straight line, bumped into walls on the way to the bathroom during the night.  Lasted about 8 hours.

Tomorrow I go for my 3 month PET scan.  Pretty scared.  Know that if it is not clear I will need surgery.  Been reading about chemo being given after radiation so I will inquire about that.  

Ordered another case of Glucerna 1.5 from a seller on Amazon who sold me dented cans and reimbursed me for the damaged ones.  I just can't stand the bottles of Glucerna from the grocery stores and pharmacies here locally.

I tried eating again this week but spit out and gargled after.  Still have a terrible taste on my tongue at all times.

PROBLEMS WITH STOMA

My stoma is bleeding again.  It has bled only a couple of times in all the months I've had the PEG tube in my stomach.  I cleaned it up and added more antibiotic cream and gauze pads.  

This really worries me.  Not sure why it is bleeding.  When I changed the pad there was a lot of brown discharge around the hole in the gauze.  So it is leaking stomach contents.  When this type of thing happened before, the clinic said that was normal and not to worry about it.  I worry about infection.

I sure wish I could eat so I could get this tube out.  If I have to have surgery I will need this PEG tube so I guess I'll have it for awhile.

The cancer center called today and informed me of my PET scan schedule.  I will have to be at the hospital for 7:15am on November 17 and a followup with the Oncologist at 3:00pm on November 21st.   If the scan is not clear of cancer I will have to have surgery.

ONCOLOGIST APPOINTMENT TODAY

Informed my Oncologist that I was scoped yesterday and that the ENT doctor saw blood where the cancer was on the base of my tongue.  He said that the ENT did  not put that in his report to him.  This really upset me as I feel this is very important.  There is a lack of communication between these doctors - at my expense.

The Oncologist refused to discuss the issue because it was not in the report.  It was as if he was not trusting me to tell him the truth.  Tomorrow I will call the ENT and request that he inform the Oncologist of the blood issue.

I requested that the PET scan be scheduled for the 17th of this month.  That would make it exactly 3 months out of treatment.  He said he would try and get as close to that date as possible.

I got another script for Hydrocodone and left.

ENT SCOPE TODAY SHOWS BLOOD

Had appointment with the ENT doctor who scoped me and saw an inflamed area that had a spot of blood on it.  This was the same area as the tumor.  He asked me if I had been spitting up blood and I said I had not seen any blood.  I asked if it was just a spot that had not healed yet and he said he did not know.  He said he would do a biopsy as his next move.  I feel that this is going to be a problem and may be more cancer.  If the biopsy shows that I need surgery he said I could have it done locally with Dr. Saal or at Ochsner in New Orleans.

I see the Oncologist tomorrow and we will discuss the date for the PET scan.  Hoping to have it done the week of the 20th of this month.

This is not what I thought I would hear.  My throat has improved a great deal in the last few weeks.  Why is there blood in my throat? 

CHILLS AND FEVER

Last night about 2:00am I started having chills that were so severe I moaned out in pain.  I didn't take my temperature because I drank a little water and knew it would not be accurate.  My whole body hurt.  About an hour later I decided to take some Hydrocodone.  It did help some and I was able to sleep some more but kept waking myself up moaning in pain and trembling.

This morning I felt better.  No chills all day till about 4:00pm.  Felt very weak so took my temperature and it was 100.2.  Did a tube feeding, some Miralax, and took some more Hydrocodone.  Hadn't taken any since about 3:00am.  Called my Oncologist and spoke to his nurse who said to go to the emergency room.  I feel to weak to go to the ER.

The only pain I am having is in my stomach.  Lots of gas and bloating.  I feel that I may have ingested some bacteria from the damaged cans of Glucerna I used yesterday.  Nothing else hurts - not even my throat.  Several hours later I had a bowel movement that was not normal.  I felt relief afterwards.

I will wait and see if the fever goes down and then decide what to do.  This is a little scary.

I called my friend Pat to inform him that I would not be going to his house this weekend.  We will reschedule for another weekend.  I was so looking forward to going to the beach.