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Thursday, December 28, 2017

EXERCISE


Back in January - at the weight of  170 pounds - I had started an exercise program of walking a couple of miles every day.  I started at the track then purchased a treadmill for my house.  Then in April I was diagnosed with Cancer and had not exercised since.   

Today - at a weight of 140 pounds - I got back on the treadmill and walked a quarter of a mile.  That's all I could do - but it's a start.  I'm very weak and my muscles have atrophied a bit.  Hoping I can build up some strength.

Ate some yogurt yesterday.  May try a small pancake and syrup later today.  Everything else goes down the PEG tube.

Still doing my lymphatic massages and wearing my compression garment every morning.  Don't see any difference in my neck at this time.  Quit going to therapy at the hospital.  Got more info by watching Youtube videos of lymphatic massage.




Monday, December 25, 2017

CHRISTMAS DINNER AT BOB'S HOUSE

Had a nice visit with my brother and his family. Ate a few bites of ham. A few pieces of green beans went down well. Of course I had to wash down each bite with coke. That was all I could do and that took about 30 minutes. 

Brought a copy of the Family Tree book I made and we discussed stories of our ancestors. Gave them 3 of my books I had published years ago. They gave me a beautiful blue and white lap blanket that is also electric. It is so warm and comfortable. It sure comes in handy as I find it hard to get warm sometimes. I loved playing with the dogs. They are so sweet.



Saturday, December 23, 2017

EATING IS SO HARD TO DO

Tried eating again today.  Boiled an egg and took a small bite of the white portion but had to spit out as it tasted awful and smelled awful.  Then tried a small pudding cup and the first couple of bites were not so good but I was determined to eat more so I forced myself to continue and I eventually finished the whole cup using coke to wash down each bite.  That was an improvement.  I can still manage my afternoon snack of a half a cup of ice cream with coke (coke float) which tastes as it should.

My goal is to find several things I can eat that has protein so I can plan on having the PEG tube removed.  I'm hoping for removal at the 6 month mark.  I'm now at 4 months post treatment.

Thursday, December 21, 2017

COMPRESSION GARMENT

My compression garment came in today.  I'm to wear it for only an hour at a time twice a day for my lymphedema.



Aren't I cute?

Monday, December 18, 2017

ANOTHER ATTEMPT AT EATING

This week I tried a small pancake with butter and syrup and was able to eat half of it.  It tasted as it should but I just can't eat but a few bites of anything.  Having some food aversion.  Don't have any more cravings for my favorite foods.  

Still doing my lymphatic massage exercises once a day.  My compression garment will be here by December 21st.


Thursday, December 14, 2017

LYMPHATIC MASSAGE APPOINTMENT TODAY

Went to therapy today and was instructed on how to do self massage.  I was given a temporary chin strap to wear when I do the exercises.  She showed me a different way to massage than the way I had been doing it.  I will be purchasing a chin strap online soon.


Wednesday, December 13, 2017

OROPHARYNGEAL CANCER AND HPV 16

HPV is the most common sexually transmitted virus and infection in the US.

There are nearly 200 different strains of HPV, most of which are harmless and do not cancer. Out of all these, 9 are known to cause cancers, and another 6 are suspected of causing cancers as they are commonly found along with one of the nine we know to be oncogenic. In oral cancers, we are primarily concerned with HPV number 16 which is also associated with cervical, anal, and penile cancers besides those of the oropharynx.

You can have HPV without ever knowing it because the virus often produces no signs or symptoms that you will notice, and the immune response to clear it is not a process that you will be aware of.

Every day in the US, about 12,000 people ages 15 to 24 are infected with HPV. According to data from the ongoing NHANES study, approximately 26 million Americans on any given day have an oral HPV infection. Of those approximately 2600 are HPV16. The vast majority of individuals will clear the virus naturally through their own immune response, and never know that they were exposed or had it.

If you test positive for HPV, there is no sure way to know when you were infected with HPV, or who gave it to you. A person can have HPV for many years, even decades, before it is detected or it develops into something serious like a cancer. In the vast majority of infected people, even with a high-risk version of HPV known to cause cancers, they will not develop cancer.

Testing positive for an HPV infection does not mean that you or your partner is having sex outside of your relationship. It is believed to have long periods of inactivity or dormancy that may even cover decades; these are periods of time that you will test negative for it.

Sexual partners who have been together for a while tend to share all types of sexual infections. Typically if one partner has a fungal infection like Candida, the other partner has it as well, even though they may appear to be asymptomatic. The same is true of other common sexual infections like Chlamydia, a bacterial infection. HPV viral infections also are commonly shared. This means that the partner of someone who tests positive for HPV likely has HPV already, even though they may have no signs or symptoms. Like most Americans, their immune system will customarily clear it in under 2 years.

Condoms may lower your chances of contracting or passing the virus to your sexual partners if used all the time and the right way. However, HPV can infect areas that are not covered by a condom- so condoms may not fully protect against HPV.

Because of its ubiquitous nature, the CDC says that more than 80% of Americans will have an HPV infection in their lifetimes. For most of us, this occurs late in our teens and twenties when our sexual activity is the highest and the number of partners is likely the greatest. 

The human papilloma virus (HPV) is a double-stranded DNA virus that infects the epithelial cells of skin and mucosa. The moist epithelial surfaces (squamous cells) include all areas covered by skin and/or mucosa such as the mouth interior, throat, tongue, tonsils, vagina, cervix, vulva, penis (the urethra – the opening), and anus. Transmission of the virus occurs when these areas come into contact with a virus, allowing it to transfer between epithelial cells. While it is established now that sexual contacts, both conventional and oral, are means of transferring the HPV virus through direct skin to skin contact, it is still poorly understood what other transfer pathways may exist. It is highly unlikely that the virus can live for long on inanimate objects outside of a cell.

The leading cause of oropharyngeal cancer is from HPV, a very small number of oral cavity cancers also occur from HPV. The HPV family contains almost 200 strains, and it is one of the most common viruses in the United States. It is important to understand that of all these, only nine are associated with cancers. Of the nine that are high risk, only one is strongly associated with oropharyngeal cancer, HPV16. A handful or more are associated with benign growths (warts) and the vast majority we have no evidence, other than they exist, that they harm us in any way.

The CDC says that up to 80% of Americans will have HPV infections in their lifetime and 99% will clear these infections without consequence, or even knowing that they had the infection, as it produces no symptoms they will notice. The body’s immune system is usually able to get rid of an HPV infection and many infections come and go without causing any problems, or an individual even knowing they were infected. 

The information provided is not meant to scare you. Oropharyngeal cancers while increasing rapidly in incidence, are still a very small risk in our world. It is meant to educate you about the risk factors and signs and symptoms of oral and oropharyngeal cancer. An informed individual will be able to self-discover something which is going wrong and bring it to the attention of a medical or dental professional for the earliest possible diagnosis of a problem.

Early discovery has many positive impacts when you consider cancer; potentially longer life spans, and reduction of treatment related morbidity, which significantly improves post cancer treatment quality of life.

There is no cure for the virus. Most of the time, HPV goes away by itself within two years and does not cause health problems. It is only when HPV stays in the body for many years, usually decades, that it might cause these oral cancers. Even then, it is a very small number of people that will have an HPV infection cascade all the way into an oral malignancy, though that number is increasing every year by about 10%. 

It is not known why HPV goes away in most, but not all cases. For unknown reasons there is a small percentage of the population whose immune system does not recognize this as a threat and it is allowed to prosper. Although HPV can increase the risk of developing some types of cancer, most people who have HPV do NOT develop cancer.


I'm in the 1% of the population that was not able to clear the HPV infection.  My immune system was not able to get rid of the HPV infection that laid dormant in my body for over 20 years.

There are therapeutic vaccines under study which may be able to suppress viral loads and prevent recurrences in patients with HPV positive tumors. The results from these has yet to be published, and we are far from knowing definitively that this is possible.


LUNG CONGESTION

Been having lots of congestion and wheezing in the wee hours of the morning for the last week or so.  It never happens during the day.  I wake up from the noise of the loud wheezing and cough a lot to get the phlegm up but it soon returns.  This goes on for hours till I get out of bed.  I sleep elevated but it does not seem to help.   This is not the same as the situation with mucous in my throat from the radiation.  This is in my lungs.

Friday, December 8, 2017

LYMPHATIC MASSAGE APPOINTMENT

Had appointment with therapist today.  Measurements were taken of my face and neck for future reference.  Filled out lots of paperwork.  Was given instructions on exercises to do to help move lymph fluid from my neck.  

Will return every Thursday at 1:00 for 6 weeks.  Looking forward to an actual massage from the therapist.

Found a compression garment I like online for a reasonable price.  Was told to wait till next visit before purchasing one as she has to get the OK from Oncologist.


Thursday, December 7, 2017

MORE VERTIGO

Had another episode of Vertigo starting yesterday.  Lasted on and off all day and lessened today.  Still having mild ear aches in left ear as well.  Don't know why.

Wednesday, December 6, 2017

CIRCUMVALLATE PAPILLAE

Had visit with ENT doctor today.  Explained the discomfort I am having with the bumps on the side of my tongue.  He examined me and did not have to scope me as the area is not at the base of my tongue where the cancer was.  He used a mirror and tongue depressor to see the area. He said it was enlarged Circumvallate Papillae.


What are Circumvallate Papillae?

Circumvallate papillae (CP) are bigger than other papillae and are arranged in a v-shaped way in the back of the tongue near the throat. Most people have from 6 to 12 circumvallate papillae.
These papillae are used to taste bitter. These sensors can make a person gag from bad tastes. CP are also called vallate papillae.
They are arranged in two rows and each of them has 1 to 2 mm projections of mucous membranes. These projections are connected at the base of the mucous membranes which is shaped as a circular depression. The edge of the circular depression forms a border called a vallum (wall).

How to Treat Enlarged Papillae ?

Usually enlargement of circumvallate papillae is self treatable but following certain measures can help to accelerate the healing of the condition:
  • Licking ice cream or topical application of ice cubes can help to control pain and may also reduce enlargement
  • Local administration of cold compression and drinking cold drinks can help to manage the discomfort
  • Chewing mint leaves can help inflammation of the tongue
  • In the case of throat infections that cause enlargement of circumvallate papillae, you can help it by gargling with salty lukewarm water
  • A balanced diet with fruits and vegetables can provide essential vitamins, compensate the vitamin deficiency therefore help to reduce the symptoms
  • Adequate water intake can help to flush toxic substances from the mouth and reduce irritation/enlargement of papillae on the tongue
  • Antibiotics or antiviral drugs can treat mouth ulcers and viral infections. Topical application of antifungal drugs, analgesics and anti-inflammatory medications can reduce discomfort / decrease enlarged circumvallate papillae
  • Multi-vitamin, mineral supplements and a diet rich in vitamin B12 / iron can also be useful in the case of enlarged circumvallate papillae caused by vitamin deficiency
  • Different natural oil gurgling such as tea tree oil gurgle or sesame oil gurgle can also be beneficial for fungal and thrush infections
  • Good oral hygiene and periodic visits to the dentist can reduce the chances of development of enlarged circumvallate papillae
  • Do not bite the tongue, accidental biting or injuries can be treated with topical application of glycerin which helps to reduce the trauma
  • Low fat dairy products including yogurt can provide considerable benefits for reduction of enlarged circumvallate papillae by treating thrush infections
  • Stop smoking and avoid hot spicy foods for maintenance of good tongue health
  • Well fitting dentures can help the tongue
  • Drink soups made with ginger, garlic and pepper to help prevent oral infections
I'm going to try different things to see if I can relieve the discomfort in my throat.  I return to the ENT in one month.

Tuesday, December 5, 2017

THRUSH AGAIN ON TONGUE

Noticed a few spots of white thrush on the left side of my tongue yesterday.  I had not been gargling with the Magic Mouth Wash as often as I had been.  Began gargling twice a day and it has cleared up.

Tried eating again.  Scrambled an egg and took a few bites, chewed but had to spit out - tasted horrible.  Was able to drink half a cup of chocolate milk.  Also tried a few small bites of toast with butter but had a hard time swallowing even with lots of sips of water to wash it down.  Lately I have been enjoying a half a cup of vanilla ice cream with coke.  Some time back, ice cream tasted bad so this is a sign of improvement.

See my ENT tomorrow for another scope.  I hope he can see whatever it is that I feel on the left side of my tongue that rubs against my throat.  I didn't have this until after treatment was completed.  It feels like maybe scar tissue.  It's a small piece of skin that is very uncomfortable in my throat.  I can feel it when at rest as well as when I move my tongue.  I can reach it with my own finger but when the Oncologist examined me he could not feel it.  I just want to know what it is.

Still have dry mouth and some mucous.  I use Xylimelts at night which is very helpful keeping my mouth moist.  I'm still not drinking enough water but will try to increase the amount.

I'm running out of Hydrocodone and am hoping I can get another script.  Without it the discomfort with mucous and scar tissue and some slight pain on swallowing is aggravating.

I'm a whole lot better than I was a month or so ago and can actually see some improvement.  My problem with smell is a lot better.  My taste is slow in coming but I'm hoping for more improvement in the next few months.  I no longer crave certain foods like I did last month.  I guess it's because I know it will not taste right.  I dreamed I was eating a hot dog with chili the other night.  It was wonderful.


Thursday, November 23, 2017

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.

Tuesday, November 21, 2017

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.



Sunday, November 19, 2017

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.




Saturday, November 18, 2017

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.

Thursday, November 16, 2017

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.

Thursday, November 9, 2017

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.

Tuesday, November 7, 2017

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.




Monday, November 6, 2017

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? 

Thursday, November 2, 2017

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.


Tuesday, October 31, 2017

LAST SPEECH THERAPY SESSION

I requested to be discharged from Speech Therapy today as I have gotten all I can get out of it.  I continue to do the exercises I was taught and appreciate the help from the department.  

I can not have any Physical Therapy for Lymphedema as there is a possibility I still have cancer and it is too dangerous to move lymph fluid around that might spread the cancer.  So no more Tuesday and Thursday afternoon appointments.  Now I can go back to napping. 

Monday, October 30, 2017

FIRST REAL FOOD

Well today I just couldn't wait any longer.  Ordered a plate lunch from the nearby restaurant.  Felt that I could eat some grilled fish.  It came with potato salad, bread, and green salad.  Also ordered a cup of seafood gumbo.  Took a few sips of gumbo but tasted pretty bad.  Potato salad wasn't as bad as I thought it would be.  One bite of fish with tartar sauce and I knew I couldn't eat any more.  At least the smell wasn't too bad.  That's an improvement.  However, everything burns my throat and I have to drink water to ease the pain.  I probably should not have started with these types of food.  Small steps would have been better instead of jumping into real food. 

Amazingly the lettuce was the only thing that didn't taste bad.  I brushed my teeth and gargled afterwards to rid my mouth of all the tastes.  I tried but it's just not happening.  Fifteen dollars down the drain.  I'm going on 10 weeks out of treatment.  Judging by my progress it may be many more months before things taste right.

The good news is that I can drink lots of water without choking.  In fact, without even thinking at times.  It's like my throat has remembered what to do on its own.   So happy about that.  I may start smoothies now.

Sunday, October 29, 2017

RV DAY TRIP

Took a day trip in the RV with the dogs.  Went to visit some cousins who live an hour away.  Hadn't seen  in many years.  It was a beautiful sunny and cool day and I really enjoyed my visit.  It was good to share stories of the past when we were growing up in the same neighborhood.  I just wish we would have taken some photos.

We plan on getting together again here in Houma next month.  Hopefully by then I can eat and we can go to a restaurant and have a meal.

I stopped at the cemetery to visit the tomb of my parents.  While there I had to do a tube feeding.  It had been 4 hours since I had any nourishment so this was a good a place as any.  Kinda weird though.



  

Saturday, October 28, 2017

STILL NOT READY FOR FOOD BY MOUTH

Tried eating some turkey and gravy with mashed potatoes.   Spit out the potatoes and turkey.  Ate a few spoonfuls of gravy then threw it all out.  Had to gargle and brush my teeth after to get rid of the taste.  Tried some Key Lime Pie and was able to eat a few bites.  Tasted a little bad at first then got better.  I especially enjoyed the crust.  However, still not ready for food.

Feeling stronger today.  Not much mucous.  Taking my pain meds every three hours so not in any pain and also cuts the mucous down a lot.

Finished my antibiotics and steroid meds.  My throat feels a lot better.  However, I still feel something on the left side of my throat where the cancer was.  It feels like a growth.  Not a lump but I imagine it being a small piece of skin.  Hard to explain.  Probably scar tissue.

Friday, October 27, 2017

SO HUNGRY

Tried eating again.  Took a few licks of peanut butter from a spoon.  It tasted good.  Tried a cracker but had to spit it out.  Took a few spoonfuls of clam chowder broth but it didn't taste good.  I'm so hungry for real food.  I want some fried fish so bad.

Starting using Xylimelts for dry mouth and it really works well.  Kept my mouth moist as it slowly melts.  Am drinking more water.

Almost out of Glucerna 1.5 - ordered too late as it won't be here for 5 more days.  Will have to drink the Boost bottles that have little calories.  This aggravates me so much and makes me want to just dive in and eat the foods I am craving.  

I am not to have anything thicker than nectar but I want chicken nuggets, fried fish, gumbo, pizza, etc.   Maybe tomorrow I'll try one of those things to see if I can stand the smell and the taste.  Hate to waste food but may have to throw it out if I can't eat any of it.

Thursday, October 26, 2017

NO LYMPHATIC MASSAGE UNTIL NED

The Oncologist called me this morning and explained that he spoke with the ENT and indeed I was given a one dose Diflucan in the past for thrush.  So he phoned it in to my pharmacy.  I thanked him and he said to call if I start to have pain again.

I picked up the medicine and noticed that there were two.  He had called in yesterday a script for the liquid Nystatin that needed to be taken for an extended period of time.  I didn't want that.  I went ahead and purchased it anyway because the pharmacist said I could put some of it in the Magic Mouth Wash gargle I use and it will keep the thrush away.  Otherwise I will use the Diflucan pill that can be crushed and put in my tube for the thrush.  

Went to Speech Therapy today and was informed that as long as there is some active cancer I can not receive lymphatic massage as it can spread the cancer throughout the lymph system.  Wow, how scary is that?  So until the PET scan results state that I am NED there will be no way to get rid of this fluid buildup in my neck.  If left alone too long it will harden and I will never be able to get rid of it.

I am still taking the antibiotic and steroid meds.  Will be finished in two days.

Had a nice long visit with a neighbor who is also a cancer survivor.  It was so good to talk to someone who understands what you are going through.  Thank you Phyllis.  It meant a lot to me that you welcomed me into your home and shared your experiences with me.  It's very hard not having anyone to talk to.  So glad we met.  

We exchanged phone numbers and plan to meet again.

Wednesday, October 25, 2017

ONCOLOGIST APPOINTMENT FOR THRUSH AND CAT SCAN REPORT

Met with the Oncologist today and went over the results of my CAT scan.  He is not concerned about the salivary gland stone or the nodule on my thyroid.  He is concerned about the continued inflammation on my tongue and the lymph node not completely reduced.  He feels that there might be dead cancer cells in the node that makes it still appear enlarged.  As for the tongue, he wants to get the inflammation down and then do the PET scan earlier than planned.

He called Dr. Beyer the ENT doctor and they discussed my last scope.  He agreed to put me on Diflucan for the thrush and to check me again in two weeks.  I see the ENT again in one month.




Tuesday, October 24, 2017

GLUCERNA 1.5 HARD TO FIND LOCALLY

Had Speech Therapy today.  Just kind of went over what I've been doing and feeling.  Nothing new learned.

Still taking antibiotics and steroid.

Tried some soup and noodles today.  Was able to swallow the broth but spit out the noodles.  Only able to eat a few spoonfuls of broth.  Not a lot of flavor.  Tried a spoonful of yogurt but couldn't eat any more.  Rinsed out my mouth as a bad taste lingered.

Introduced myself to one of my new neighbors Phyllis who is also a cancer patient.  Told her I needed someone to talk to and she agreed to have a get together soon.

My friend Pat shops at Sam's Club and I asked him to check and see if they sell Glucerna 1.5.  He called me and said that they did sell Glucerna and he was going to buy me a case.  Wish I would have emphasized the 1.5 in a can fact.  Turns out he purchased the Glucerna in a bottle at only 180 calories per serving as opposed to 356 calories per can.  I can still use the items but not as a complete meal.  Ordering online has not been beneficial.  Most cans arrive dented.  However, it looks like I will have to continue with online purchases.

Enjoyed my visit with Pat.  He massaged my neck and it was very relaxing.


Monday, October 23, 2017

LITTLE GIFTS FROM RADIATION

So far I've lost 25 pounds.

I felt good enough to put on some makeup today.
There is some lymphedema under my chin - looks ugly.
Will be getting therapy for that.

Lost lots of hair on the base of my neck as well as thinning all over.  It is growing back.

Sunday, October 22, 2017

TRIED EATING AGAIN

Tried eating some vegetable soup tonight.  Amazingly enough, it didn't stink.  So I tried a few spoonfuls of the tomato broth.  I was so happy that it didn't taste chemical.  However, after the second spoonful it started to burn my throat -  especially on the left side where the cancer was.  I kept trying and drinking water after each bite but it really burned a lot so I quit.  More wasted food. 

I feel that there is something on the base of my tongue as I can feel it when I move my tongue.  It doesn't feel like a lump.  It feels like some loose skin or a piece of skin hanging.  It's hard to describe.  I'm just hoping it is scar tissue.


CAT SCAN RESULTS

Study Result of CT Scan

Impression

1. No discrete left vallecular mass seen comment there is soft tissue fullness in the region which could represent post therapy change, but residual mass is possible.
2. Interval decrease in size of the metastatic left cervical lymph node, now measuring 1.2 cm.
3. 5 mm calcification adjacent to the right submandibular gland, possibly a stone.


Electronically signed by: JOHN STEIGNER MD
Date: 10/20/17
Time: 15:59

Narrative

Exam: CT neck without IV contrast.

Indication: Elected a neoplasm.

Comparison: Neck CT 2/9/2017, PET/CT 05/16/2017.

Iterative reconstruction technique was used.

Findings:
The left vallecular soft tissue mass seen on the previous study is not definitively seen; however, there is mild fullness in the left vallecular region. This could represent residual neoplasm or post therapy change. The enlarged left cervical lymph node is decreased in size, and now measures 1.2 cm. No other masses are noted. The parotid glands are unremarkable. There is a 5 mm calcification adjacent to the right sub-mandibular gland, suspicious for a stone. The left submandibular gland is not identified. No enlarged cervical lymph nodes are seen. There is a 2 cm nodule in the right lobe of the thyroid.

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


Not sure if I should be relieved or not.  This is not a NED.  I'll see what the Oncologist has to say on Wednesday. 


Friday, October 20, 2017

CAT SCAN TODAY

Had a CAT scan today.  Will get results at next appointment with Oncologist on Wednesday of next week.  Hoping for the best - prepared for the worst.

They wanted me to pay a copayment of $225.  I asked if I could be billed and they said no.  I paid the money then after the scan was complete I went to the Financial Services department and spoke to Jennifer who said I do not have to pay the whole amount as I have been approved for assistance and only owe 10 percent.  So they reimbursed me.  This assistance is good until February of 2018.  After that I will have to pay the copayment every time I get a scan.

The left side of my throat is still sore and burns when swallowing any liquid.  I also feel something is there at the same place that the cancer was.  It is a new sensation and it scares me.  I hope it is only scar tissue.  I continue to take the antibiotics and have discontinued the steroid as it hurts my stomach.

I forced myself to try to eat something today.  Stopped at a fast food place and got a vanilla shake and some fries.  The fries did not smell bad so I figured I'd try some.  No luck.  Had to spit out.  I did lick the salt off of some of them and it tasted so good.  I drank half of the shake before it started to taste really bad.  At least I tried.  Still not ready.




Wednesday, October 18, 2017

REACTION TO ANTIBIOTICS AND STEROID

Having severe stomach pain after taking the meds the ENT doctor gave me for my inflamed throat.  Took some Gaviscon to see if it would ease up a bit.  Think I will stop for a day and let my stomach heal.  It seems that every time I take a drug I get this thick coating that forms on my throat even though I take the meds in my tube.  It gags me.  This is so strange.  I gargle but it doesn't help.  

Started doing the exercises the Speech Therapist told me to do.  It's hard to concentrate on any task when my throat is gagging me.

Today was not a good day.  Feeling pretty bad.


A NEW EPIDEMIC

There is a new epidemic building world-wide that has received surprisingly little attention. It is a significant increase in the number of head and neck cancers caused by the HPV virus (human papilloma virus). And the numbers are expected to keep rising.

According to the US Center for Disease Control, there are now more cases of HPV-related head and neck cancers diagnosed each year in the US than cases of HPV-related cervical cancers.

HPV is sexually transmitted and is associated with cancers in the cervix, anus, penis and  head and neck, especially in the tonsils, back of the tongue and throat.

About 80 per cent of the population have HPV in their system at some time. Usually the immune system does its job and throws it off. However, for some, it causes changes in the DNA that take a long time to manifest as cancer.


Tuesday, October 17, 2017

LYMPHATIC MASSAGE EVALUATION

Had my second session with the Speech Therapist today.  Was given instructions on how to do many exercises that will have to be done at least twice a day and some for the rest of my life.

This session ended and it was time for my Lymphatic Massage Evaluation.  However, when the tech found out that I am now on antibiotics she said we would have to wait till after I'm through with the meds.  So I got to leave early.  Glad, as I am not feeling well today.  Took a nap when I got home.

I ingested through my PEG tube 1282 calories, 85 grams of protein, and 19 ounces of water.

Monday, October 16, 2017

ENT APPOINTMENT TODAY

Saw Dr. Beyer today and he scoped me.  Said that the area that is hurting and burning is a little more inflamed than the rest of my inflamed throat.  Gave me an antibiotic and a steroid.  He does not feel it is a recurrence of the cancer.

Felt the lymph node and said the swelling I feel is my saliva gland not node.  Didn't say what to do about it.  Asked him about the white stuff on my tongue and he said it was not thrush but a side effect of the radiation.  Nothing we can do about it.  Wants to see me in one month.

I'll be through with the meds he gave me in one week but will have to wait 3 more weeks for another scope.  That will be nerve racking.

He said to keep my mouth moist even if I have to sip water and swish and spit it out.  I think he feels that the dryness is hurting my throat and hindering healing.  I agree.

Today was not a good day as I felt weak and just wanted to nap on the sofa when I got home.



Thursday, October 12, 2017

BURNING IN THROAT

Now that I have more Hydrocodone and don't have to worry about getting more, I can take a larger dose.  I still have not taken the recommended dose.   I have increased only slightly but still have pain where the cancer was on my tongue.  It burns when I sip water and now is burning all the time.  The pain in my left ear has also increased.  Something is not right.

I'm scheduled to see my ENT doctor on Monday for a scope.  Then on Tuesdays and Thursdays I'm scheduled for Speech and Physical Therapy.  On Wednesday I see my Oncologist again.  He has scheduled me for a CAT scan on Friday.

I ingested through my PEG tube 1282 calories, 85 grams of protein, and 18 ounces of water.

Wednesday, October 11, 2017

SPEECH THERAPY APPOINTMENT

Nice lady named Debbie went over a lot of information with me about my problem swallowing.  She read from an in depth report of the Swallow Study I had done.  Showed me on a drawing where the food is staying stuck.  It's not just in one spot but also lower in my esophagus.  She mixed some thickening agent in apple juice and had me drink a small spoonful.  I did it with no problems.  It didn't even trigger that awful metallic taste on my tongue.  She wants to see me for 6 weeks.  At some point she will refer me back for another Swallow Study.

My Oncologist had forgotten to refer me to Physical Therapy for my lymphedema.  The clerk called his office and spoke to his nurse who will relay that message.  Then I can do both at the same visit.  I will be scheduled for next week.  

When I got home I called my ENT doctor and requested another appointment with him for next Monday for a scope as requested by the Oncologist.


Ingested 1282 calories, 85 grams of protein, and 12 ounces of water.




Tuesday, October 10, 2017

MORE SCANS ORDERED

Had appointment with Oncologist today.  Brought my long list of symptoms and read them out to him.  He was a little overwhelmed by it all.  Wasn't expecting all of that.  Seemed concerned about my throat burning when I drink water as well as my ear pain.  Ordered a CAT scan and mentioned that we might have the PET scan earlier than planned.  I told him I thought my lymph node had grown a little.

He referred me to a speech therapist due to my problems swallowing and I have an appointment for 10:30 tomorrow morning.  I also asked for a referral to a physical therapist for lymphatic massage for my lymphedema in my neck.  

He wants to see me again in a week.

He was going to scope me until I said that I would be seeing the ENT doctor in a couple of weeks.  He agreed that it would be better if the ENT did the scope and that I should call him and ask to see him as soon as possible.

I explained about the Hydrocodone and he said that I will continue to take it and if I run out to call his office and tell the staff that I need another script.  I was surprised to hear this.

I told him about my taste buds and how everything stinks and that I can smell what only animals can smell and he said he had never heard of such a thing.  However, smelling and tasting problems are common in head and neck cancers after treatment.  Survivor stories are all over the Internet with similar complaints.  This just led me to believe that he has not had a whole lot of experience with head and neck cancers.


Ingested 1258 calories, 75 grams of protein, and 12 ounces of water.

Monday, October 9, 2017

DIZZY SPELLS

Had 2 dizzy spells today.  Earache woke me up.  Took long naps today.  Not feeling well.

Ingested 1282 calories, 85 grams of protein, and 14 ounces of water.

THINGS TO TELL MY ONCOLOGIST

Collateral Damage


Swallow study shows a problem

put on pureed diet

tongue taste metallic

smell is off - everything stinks

gag with food on tongue have to spit out

referred to speech therapist ???

water burns left side of throat

still aspirate on sips of water

throat pain when swallowing especially at night

my body is not ready to eat


Ear pain

dizzy spells

sore neck area left side

need help with lymphedema 


coughing and choking attacks feels like needles

threw up twice

had weaned off pain meds cause I ran out

increase in mucous without Hydrocodone

not ready to get off Hydrocodone



increased my caloric intake

increased my water intake

Sunday, October 8, 2017

MUCOUS

Didn't get out of my pajamas today.  Took several naps on the sofa.  Feeling weak and struggling with mucous.  Can't get any relief.  Will see the doctor in two days.

I think some forget, that I just didn't get over a bout of the flu, and am better now.  Caner tried to kill me, then the Doctors damn near killed me.  The body has a lot of healing to do, and that sucks energy out of the things we want to do.  


Today I ingested through my PEG tube 1282 calories, 85 grams of protein, and 19  ounces of water.

Saturday, October 7, 2017

WAITING FOR THE HURRICANE

We really got lucky here in Houma as the storm passed us by on the eastern side of south Louisiana.  I was prepared to stay home no matter what.  It would be more dangerous for me to evacuate and get on the road.  Been there... done that.  

Not feeling good today.  Lots of mucous in my throat.  Some pain and lots of discomfort.  Can't wait till Tuesday when I see the doctor.  

I ingested through my PEG tube 1282 calories, 90 grams of protein, and 14 ounces of water.  Not a good day.

  

Friday, October 6, 2017

MUCINEX

Tried some Mucinex today.  Couldn't believe it was over $18 a bottle.  Injected into my tube and had the awful taste in my throat for hours later.  Not sure I want to take any more of that.

Had another coughing spell this morning.  A pretty bad one.  Just like a needle sticking my throat making me cough till I can't catch my breath and then gag till I throw up. 

I ingested through my PEG tube 1446 calories, 90 grams of protein, and 16 ounces of water.  Not a good day.

Thursday, October 5, 2017

ROBITUSSIN

Tried some Robitussin cough medicine today in hopes that it would stop the coughing and choking spells I've been having.  It left me with a stomach ache and lots of foam forming in my throat that has yet to go away.  I won't be taking any more of that.

Received another case of Glucerna today.  This is my 4th.  Also purchased more Boost from the store today.

I ingested through my PEG tube 1282 calories, 85 grams of protein, and 11 ounces of water.  Not a good day.

LONELINESS

Loneliness often causes more suffering than physical pain.

There is every reason to believe that the solitude the seriously ill impose on themselves when they don't talk about their fear of dying contributes to making their condition worse.

We have a profound animal need for PRESENCE when facing danger and uncertainty.  Words aren't necessary.  It is important to listen rather than speak.  Gentle, constant, reliable presence is often the most beautiful gift our dear ones can give us.  But not many of them know that.

Visit the sick.  Be there for them.   Let them express how they feel about their illness and their medical treatment.  You don't have to agree with them... just listen.  It's not about making you feel better.