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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 cause 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.