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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.

Wednesday, October 4, 2017

COUGHING AGAIN

Today I had another coughing and choking spell.  I used my Lidocaine gargle but it has continued on and off all day.  I keep sipping water to try and stop the stinging.  I need the Hydrocodone.

I also tried eating some pureed sweet peas but had to spit it out as it tasted horrible - that same horrible metallic taste that tints everything I put on my tongue.  It's just not time yet.

Today is my son's 53rd birthday.  I called him and we spoke on the phone for an hour or so.  He has the day off from work so he is resting.   I had to take sips of water every few minutes as the more I talk the more dry my throat gets and hurts to swallow.

Today I ingested in my PEG tube 1282 calories, 85 grams of protein, and l6 ounces of water.

I coughed all day today.

Tuesday, October 3, 2017

COUGHING AND CHOKING SPELL AGAIN

Choked on a sip of water during the night when I got up to go to the bathroom.  That hadn't  happened in a while.

Then later this afternoon while relaxing and watching a movie I felt one of those coughing and choking episodes coming on.  I quickly sat up and took a sip of water.  That didn't help as I continued to feel that sticking sensation on the opposite side of my throat from where the cancer was.  

I quickly went into the kitchen to fix my gargle solution.  I coughed so much that at one point I couldn't catch my breath.  I then threw up the water I had just drank.  I took a sip of my gargle solution and then another but still could not get any relief.  I injected some Hydrocodone into my tube and waited for it to take effect.  Within minutes I stopped coughing but was still shaking from the experience.  I only have a few doses left and can't see the doctor for another week yet.  This is insane.  

Today I ingested in my PEG tube 1348 calories, 80 grams of protein, and l8 ounces of water.


Monday, October 2, 2017

WEANING OFF HYDROCODONE

Having a lot of discomfort in my throat lately.  Or maybe it's just because I'm not taking as much pain meds that I am noticing it.  It feels like my throat is closing and I can feel all sides touching - all the time.  I still have that sandpaper like texture on the roof of my mouth as well as some places on my gums.  

I really want to continue taking the Hydrocodone if I can get another prescription from the Oncologist.  I called his office today to ask to see him sooner than next Thursday.  They gave me an appointment for two days sooner.   That's not much help.  I tried taking Tylenol liquid a few times but it makes me feel worse so I won't be doing that again.

I think he will scope me on my next visit and I dread it.  He hurt me the first time he scoped me when I first went to see him.  He did not spray me with the numbing agent the way my ENT doctor does.  I will suggest that he use the ENT technique on me and see how that goes.

Today I ingested 1252 calories, 70 grams of protein, and 14 ounces of water.

Sunday, October 1, 2017

THE BEACH IS CALLING

Cut my grass today.  Want the back yard to look nice as I have another dog sitting job coming up in a few days.

It rained a little this afternoon and cooled things off a little.  I sat in the RV parked in my driveway and enjoyed hearing the rain drops.  I miss going camping.  I purchased a new pair of pajamas with little campers on them.  Can't wait to wear them on my next camping trip.  Hoping to go to the beach at the end of this month.

I ingested by PEG tube 1438 calories, 86 grams of protein, and 18 ounces of water. 

Saturday, September 30, 2017

AWFUL TASTE ON TONGUE

Tried a bite of pie today.  Tasted awful and had to spit it out and gargle and scrape my tongue.  I thought because it was thick it would be easy to swallow.  But it is not so much the swallowing but the awful taste that is still on my tongue.  Have no idea when this will go away.  Until it does, I won't be able to eat.  I'm only 45 days out of treatment and seem to be healing slowly.

Later I tried some hot chocolate with thickening agent in it.  Drank a few sips after it cooled and it hurt my throat.  The spot where the cancer was tends to burn when I drink room temperature water and it burned when I drank the chocolate.  Thank goodness I have the PEG tube.

I ingested by PEG tube 1438 calories, 85 grams of protein, and 16 ounces of water.  Now that I've got my calories up I will concentrate on increasing my water intake to at least 30 ounces a day.  That's still not where I should be but it is a big leap from where I've been.

Friday, September 29, 2017

BACK PAIN

I have never in my life had a boil.  Then when I first got sick I had two in a row.  Now this morning I see that I have another coming out at the same location as the others - on my butt.  I am keeping it clean and putting antibiotic ointment on it. 

This afternoon, after my 6:00 feeding, I started having pains in my upper back on the right side under my shoulder blade.  I thought it would go away but hours later it still aches.  It's not a sharp pain but it's a noticeable pain.  If it continues I will see my family doctor for a possible x-ray.

Not feeling good today.  Am trying to take less Hydrocodone and replaced it with liquid Tylenol.  This does not help with pain or with the mucous in my throat like the Hydrocodone does.  I don't have enough of the pain meds to last till my next Oncologist appointment so am trying to use it sparingly.  However, I am suffering a lot of discomfort in my throat because of that.  I may have to see him earlier than scheduled.

I ingested by PEG tube 1448 calories, 90 grams of protein, and 10 ounces of water.

Thursday, September 28, 2017

MORNING COFFEE

Today I tried to drink a small cup of my favorite coffee.  I put some of the thickening agent in it but I still choked at about half way through the cup - so I stopped.  Still sipping water all day long.

I'm still not ready to eat any pureed food.  Will continue with the tube feeding using Glucerna 1.5.

Today I ingested by PEG tube 1448 calories, 76 grams of protein, and 14 ounces of water.

Wednesday, September 27, 2017

FINANCIAL PROBLEMS

Running low on funds so pulled out some money and closed out a checking account I had for emergencies.  I really need to do a lot of dog sitting to catch up on the money I've spent on doctor bills.

Pretty boring day.  No one comes by to visit anymore.  No one calls or texts to see how I'm doing.  It's pretty sad.

Today I ingested 1228 calories, 90 grams of protein, and 12 ounces of water.

Tuesday, September 26, 2017

ANOTHER CHOKING SPELL

Had another coughing fit this morning.  The picking sensation was on the opposite side of my throat from the cancer.  This was very surprising to me.  I gargled and took some pain meds and it went away.

Used some of the thickening agent in my water bottle today.  Drank 4 ounces without choking.

Today I ingested 1228 calories, 90 grams of protein, and 18 ounces of water.

Monday, September 25, 2017

RECEIVED THICKENING AGENT

Received the thickening agent today and tried it with some cranberry juice.  It was awful and had to spit it out.  The directions called for one tablespoon to 4 ounces of liquid.  I think that it made it too thick.

Tried one teaspoon in 4 ounces of water and it was just right.  So I'm drinking more water by mouth.  Not sure I'll try it with anything else.

Today I ingested through my PEG tube 1148 calories, 75 grams of protein, and 16 ounces of water.

Sunday, September 24, 2017

JUST CAN'T EAT YET

Cooked some mashed potatoes today and tried to eat a bite.  The taste on my tongue was awful and I gagged and had to spit out and gargle and scrape my tongue.  I'm just not ready to eat anything by mouth.  At least I tried.

Tonight I started a dog sitting job that will last 6 days.  I feel alright about working again.  I'll be sleeping downstairs for the next week but that's OK.

I ingested through my PEG tube 706 calories, 66 grams of protein, and 14 ounces of water.

Saturday, September 23, 2017

TRIED TO EAT A COUPLE OF THINGS AGAIN

I tried eating applesauce today and had to spit it out due to the taste on my tongue.  I took a few sips of chocolate milk with success.  Tried a small amount of yogurt but just couldn't swallow due to the taste and how it felt on my tongue.  I ordered the thickening agent recommended to  me and it should arrive in a few days.  Then I can add it to thin drinks and hopefully prevent me from choking.  

Cut my grass in the backyard today to get it ready for the dog sitting job that starts tomorrow.

Went shopping for some small potted plants for the front patio.  Bought a new water hose as well.

Today I ingested 872 calories, 70 grams of protein, and 12 ounces of water.

Friday, September 22, 2017

GOING BACK TO WORK

I have decided to reopen my dog sitting business and have already booked 3 jobs.  Looking forward to seeing all my favorite little doggies as well as making a little more income for medical bills. 

Received another case of Glucerna from the Amazon seller who had sent me some damaged cans on the last shipment.  I was given a partial credit for the 13 damaged cans.  On this free shipment there were five of the 24 cans that were damaged.  I didn't report it.  I've just decided to use a different seller.  Ordered a case a couple of days ago and it arrived today.  No damaged cans in this shipment so will be using this new company from now on.

Today I ingested through my PEG tube 1504 calories, 95 grams of protein, and l0 ounces of water.  Now that I have all these cans I felt that I could take in more nourishment as they are 356 calories a can.  This is the most calories I have taken in and it has given me cramps and a lot of discomfort.  I will cut back on tomorrow's intake.


Thursday, September 21, 2017

SWALLOW STUDY

Arrived at the Radiology Department of the hospital today for a Swallow Study to see if I am aspirating into my lungs.  The samples of food they had prepared for me ranged from water to pudding.  They asked if I was willing to try meat and I refused.  

I didn't choke on any of these items.  I was asked to take larger amounts into my mouth which made it hard for me to swallow but I did it.  They were watching my x-ray image on a monitor in another room.  

When it was over the technician explained that the food I swallow tries to go down my windpipe but then pops back up.  She said that she thought the results would be worse than what she saw.  It's not good but it's not that bad.

She gave me some hand outs of guidelines to follow for swallowing as well as what thickening agents I need to use in the liquids I swallow.  I am to only swallow Nectar-like Liquids for now.   I am to follow a Puree Diet.  I will continue to use the PEG tube for nutrition. 

She will send my doctor her report.  She is recommending Speech Therapy.

I ingested through my PEG tube 1272 calories, 87 grams of protein, and l6 ounces of water.

Wednesday, September 20, 2017

WORKED OUTSIDE TODAY CLEANING MY HOUSE

Did some more work outside today.  I pressure washed the back of my house and screen porch.  It took 4 hours and I was exhausted and weak when I finished.  

I hurried and did a tube feeding and then bathed and rested on the sofa for a few hours.  I think I over did it but I'm glad it is done.  Before my diagnosis I washed the front of my house and it took about the same length of time.  However, I wasn't sick then and had the strength to do it.

Today I tried eating some oatmeal.  It smelled good and I put a small amount on my tongue and tried to get it to the back of my throat to see if I could swallow it.  That's when I started to gag.  

The small pieces of oats stuck to my throat and I immediately spit it all out and rinsed my mouth but I couldn't get all the small pieces of oats unstuck.  I gargled and then swiped my mouth with a napkin to get it all out.  I almost threw up.  Without saliva, food sticks to everything - teeth and gums.  I think it is too soon to be eating and I may not do any more testing.    

I ingested through my PEG tube 950 calories, 80 grams of protein, and l2 ounces of water.

Tuesday, September 19, 2017

STILL TASTE TESTING

Today I tried a small piece of a saltine cracker.  The salt tasted so good but I had to spit out the cracker which turned into clay in my mouth.  Then I tried some chicken noodle soup.  Took a few sips but tasted terrible so threw it out.

I choked two times today on sips of water.  I had not choked in over a week till today.

I ingested through my PEG tube 1282 calories, 88 grams of protein, and 16 ounces of water.

I did a little work outside today.  I washed my motorhome and emptied the fresh water tank and refilled it.  I want to go camping so bad and can't wait till I feel a little stronger to do that.  

Monday, September 18, 2017

SUPPORT GROUP MEETING

Attended my first Cancer Support Group meeting tonight.  There were about 15 members in attendance.  Some members brought their caregivers.  One lady brought cookies and another brought bottled water.  The cookies looked so good but I knew I couldn't eat any.  

The group facilitator was a social worker named Keith.  He gave an introduction on sibling positioning in the family and their reactions to the cancer patient's condition and need for support.  He then went around the table and asked how it pertained to each of us.

I said that I was always the rock with my family and friends.  I was the strong personality and caregiver - having cared for both of my parents who died of cancer and a husband who died in my home.   Having spent 20 years as a counselor I cared for many people with different types of problems.  However, now that I need a rock, I'm finding few.  I shed a few tears as I told my story and received support from the group.

Other members spoke of their need for keeping in touch with family.  How important a phone call or a text message is when the cancer patient is in need of reassurance.  Some members explained how their children became more distant and this made them sad to lose contact with their loved ones.  Keith explained that sometimes the children are not equipped with handling this type of situation.  They feel helpless that they can't do anything about it so don't want to talk about it.   

The meeting lasted 2 hours and I felt good when I left the room after the meeting was over.  I felt light hearted and proud of myself for attending.

Today I ingested 1282 calories, 88 grams of protein, and 10 ounces of water.


Sunday, September 17, 2017

MORE TASTE TESTS

Still experimenting with foods.  Today I ate 3 small bites of ice cream.  Tasted pretty bad but I managed.  Later I tried some warm beef broth.  It was horrible.  Very metallic taste.  I'm hoping that the metallic taste will eventually go away in the next few months.

Drank a few sips of chocolate milk.  It had a slight metallic taste today that it did not have yesterday.  My tongue and taste buds are healing and are not the same from day to day.  

Still taking sips of water.  Had a little couching spell today but only lasted a few seconds.

I ingested in my PEG tube 1448 calories, 92 grams of protein, and 10 ounces of water.

Saturday, September 16, 2017

EXPERIMENTING WITH FOOD

I tried several different things today to see if I could begin to eat soft foods.  First tried some chocolate milk.  It tasted good.  I took several sips at two different times and enjoyed it.

Then I tried some cut up peaches in juice.  It was ok but I didn't want to eat too much of it afraid it would nauseate me.  I ate three small pieces and had enough.

Then I tried a baked potato with lots of butter.  Put a little dab on my tongue and it was awful.  I had read on the cancer forum that potatoes and meat would be the hardest to tolerate after radiation.  I spit it out and rinsed my mouth out and gagged a lot.

Later in the day I tried another popsicle - this time orange flavored.  I actually took several small bites of it and swallowed with no problems.  It didn't taste bad.

Then I tried a tiny piece of tuna in oil.  Big mistake.  It was terrible.  I gave it to the cats.

So three out of four ain't bad, I guess.

Today I ingested through my PEG tube 1116 calories, 84 grams of protein, and 18 ounces of water.




Friday, September 15, 2017

TASTE TEST

My friend Pat came over today to help me repair my back yard fence.  He didn't want me to pay for the lumber and made me stay inside out of the heat.  I wanted to help but he wouldn't have it.

It was so nice to have someone here all afternoon.  We had a nice long visit after he completed the job.  I gave him one of my framed paintings that he liked.  He will be donating it to an auction for one of his charities.  

Thanks Pat.  I really appreciate your friendship.  You're always there when I need you.

I received my case of Glucerna today.  Thirteen cans out of 24 were dented.  I called the seller and they will reship another case.

I dreamed of eating last night.  I'm so hungry for real food that I think about it all day and now it bugs me at night.  So this afternoon I tried to taste a strawberry popsicle.  It tasted horrible.  I then tried a small dab of pudding on my tongue and had to spit it out.  The metallic taste is unbelievable.  I may try some beef broth to see if salty would be better.  I haven't eaten anything by mouth in 3 months.

Today I ingested through my PEG tube 1448 calories, 92 grams of protein, and 12 ounces of water.




Thursday, September 14, 2017

ONCOLOGIST APPOINTMENT TODAY

Had appointment with Oncologist today.  He examined my throat and listened to my lungs.  Informed him of the coughing spells.  He said that the Hydrocodone would act as a cough medicine and should help with that.  He gave me another script for the pain meds.

He looked on the computer for the report from the ENT doctor's recent scope and read it out loud, "No visible signs of cancer."  He congratulated me and shook my hand.  He was very excited about the findings. 

I told him how I felt about the ENT doctor's reaction and he said that is just the way he is.  I told him that maybe "visible" is the key word here and maybe that's why he was reluctant to say no cancer anymore.  I got no response to that.

I asked when I would be getting the PET scan and he said in 3 months - so I'm thinking in December.  He said I still had a lot of swelling in my throat.

He encouraged me to increase my drinking and to try to start eating.  We discussed my upcoming Swallow Test next week.

I have been drinking more sips of water and have also increased my tube feedings.

Today I ingested 1006 calories, 83 grams of protein, and 12 ounces of water.



Wednesday, September 13, 2017

INCREASED LIQUID PROTEIN DRINK

Well, today I decided to ingest through the PEG tube a whole bottle of protein drink at a time instead of only half - every three hours.  I make sure to do a slow flow and stop and start so as not to cause back up.  I am not comfortable afterwards and feel too full but it's better than having to feed a lesser amount every hour.

So today I ingested 1030 calories, 95 grams of protein, and 18 ounces of water.  That's all I'll be able to do.  Hopefully I'll be able to start eating soon and that will increase the calories.

I'm still sipping water during the day and have not choked in a good while.  I'm happy about that.

Tuesday, September 12, 2017

FAMILY DOCTOR APPOINTMENT FOR LUMP ON LEG

Had an appointment with my family doctor today for him to check a lump that recently came out on my leg.  He said is was a cyst and to just keep an eye on it to see if it gets larger at which time it will need to be biopsied.    

He was not happy about the amount of weight I lost (20 pounds)  and also of the amount of calories I have been ingesting.  Told me that if I lost 10 more pounds we would have to change the feeding method.  Perhaps continuous bag feeding.  I'm not too happy about that.

I told him I would increase my 4 ounce feedings to every two hours and see if I can get my calories up to at least 1000 a day.  He agreed to this.

If I take in 4 ounces of protein drink every two hours and take in 2 more ounces of water on alternating hours I will be able to have a daily total of 1246 calories, 70 grams of protein, and 26 ounces of water.  That will make a big difference in my healing and prevent me from getting the bag feedings.  However, it will mean that I will be inserting liquids into my feeding tube every hour of the day. 

Today I ingested through my feeding tube 815 calories, 67 grams of protein, and 12 ounces of water.

Monday, September 11, 2017

ANOTHER COUGHING SPELL

Had another coughing spell this morning at 6:00am.  Did all the usual things to try and stop it.  Took about 20 minutes to get some relief. 

Had a visitor today.  My friend Sylvia came by and we talked for about 2 hours.  I had a hard time talking as my mouth would get so dry so I took sips of water.  This is the first time I have taken more than 2 sips of water at a time.  I was so proud of myself.  I think it was because I was not alone.  Having someone there made me feel safe if I were to choke.   I sipped for the whole two hours and never choked.  Don't know how many ounces I drank.  It wasn't much but it was a lot of little sips.

It was so nice to have someone to talk to.  I'm alone all of the time - day and night - and I want to have someone to visit with me so much.  As soon as I get finished with these next few doctor's appointments, I will take the dogs and the RV and head out to do some visiting of my own.  Maybe look up some long lost relatives who live out of town.  

Later this afternoon my neighbors Carolyn and Evelyn came by and sat with me out in the front patio.  We haven't had this kind of visit in a long time.  I enjoyed it so much.  And of course the little doggies were so happy to have someone to pet them.

Went to the store to pick up some supplies and bought a pretty blouse as a reward for all the water I drank today.

So today was a good day.

I ingested through my PEG tube 616 calories, 51 grams of protein, and 12 ounces of water.

Sunday, September 10, 2017

TWO MORE COUGHING, CHOKING, GAGGING SPELLS

Had another choking and gagging episode at 2:00am this morning.  I had to go downstairs and gargle and use the tube for water intake.  It took a while for the coughing to stop.  

The left side of my throat where the cancer is has started to give a picking sensation that makes me want to cough.  It's like a cough tickle.  Coughing hurts my throat alot and then I start gagging and want to throw up.  It's very scary.

Then this afternoon while relaxing on the sofa and watching a movie it started again.  This time I had a hard time getting it under control.  I tried everything.  I drank sips of water, I gargled, took in some protein and water in tube, took some pain meds - but it continued for a good while.  I don't know what triggers this.

I'm still struggling with hunger.  The protein drinks seem to be less effective and not satisfying my hunger.  If I increase the amount then I feel too full and like I will throw up.  I take in about 4 ounces of the protein drinks every 3 hours.

Walked the dogs a couple of times today.  The weather is so nice so we spent time out on the front patio.  

Today I ingested 818 calories, 47 grams of protein, and 16 ounces of water.

Saturday, September 9, 2017

VERY LONELY SATURDAY

The weather was beautiful today.  Cool breezes and low humidity made it really nice to sit outside with the dogs.  I hung my hammock swing in the front driveway and relaxed for hours on soft cozy pillows.  Wish I would have had someone to enjoy it with. 

Today I ingested through my PEG tube 816 calories, 60 grams of protein, and 10 ounces of water.


Friday, September 8, 2017

22 DAYS SINCE MY LAST TREATMENT

For the first time, I did not hydrate or medicate during the night.  This morning my throat was so dry that it made a funny noise when I tried to swallow.  I had nothing to swallow but tried anyway.  

So I hurried downstairs to begin my morning regimen.  Brushed my teeth with special fluoride toothpaste, scraped my tongue, Magic Mouth Wash gargle, Nystatin swish and spit for thrush, Xanax, Hydrocodone, and 2 ounces of Glucerna protein drink with 2 ounces of water to flush tube before and after.  I felt much better a while later.

There are times during the day when I actually feel saliva on my tongue.  I'm terrified to try to eat anything but I am hungry most of the time.  The protein drink helps with the hunger pangs but only for an hour or two.  My tongue is in no shape for tasting anything and my ability to smell things as they should smell is still off.  Lots of things stink that shouldn't stink.   

If I could just go a week or so without choking on sips of water I would try some soup but don't think it's time yet.  I've read that some survivors didn't start eating for months after their last treatment.  Everyone is different.  It's only been 22 days since my last treatment.

Today I ingested through my PEG tube 890 calories, 50 grams of protein, and 16 ounces of water.




Thursday, September 7, 2017

FEELING A LITTLE BETTER TODAY

I felt strong enough to cut my grass in the back yard today.  The weather has cooled off a bit and I was able to enjoy sitting outside with the dogs for awhile this afternoon.  The rest of the time I slept on the sofa.

I feel less discomfort in my throat and can tell things are getting better.  I increased my sips of water and did not choke today.  I'm trying real hard to swallow often and do my mouth exercises and throat massages for the lymphedema in my neck.

Today I ingested through my PEG tube 890 calories, 50 grams of protein, and 10 ounces of water.

Wednesday, September 6, 2017

SOME GOOD NEWS TODAY

Had appointment with ENT doctor today.  He did a scope down my throat and I could barely wait to hear what he saw.  At first he didn't say anything.  So I asked if there was any change in size of the cancer at the base of my tongue.  Then he said the tumor wasn't there and he didn't see anything.  At first, I felt nothing.  Not excited or anything because he was not smiling or happy or encouraging me in any way.  

So I asked again and he said he did not see the tumor.  There was a lot of swelling and inflammation still  - but that will go away in time.  I began to feel relieved.  He finally did show some enthusiasm and I told him that he made my day.

He examined my throat and gave me a script for some Nystatin for the mild case of thrush on my tongue.  And that was it.  I see him again in 2 months.

Of course, the only way to know for sure is to have a PET scan.  That will show any cancer that remains anywhere in my body.  Not sure when that will be scheduled by the Oncologist.  Probably in 3 months.

I'm still in a bit of shock.  It's almost like it is too good to be true.  And you know what they say about that.  But for now I'm going to enjoy the feeling of success in my battle with the beast.

Today I ingested through my PEG tube 890 calories, 50 grams of protein, and 16 ounces of water.

Tuesday, September 5, 2017

FINANCIAL AID APPROVED BY HOSPITAL

Had a little more strength today.  Bathed and dressed and walked the dogs.  

Received more hospital bills in the mail today.  Took a trip to the hospital and spoke with the Financial Officer.  I signed a form they sent me approving me for a 90% reduction on certain bills.  Now they will reassess my balance and let me know the findings in a week or two.

Today I ingested through my PEG tube 802 calories, 48 grams of protein, and 15 ounces of water.

Monday, September 4, 2017

NO ENERGY TODAY

No energy to do anything today.  Did not walk the dogs.  Did not bathe or get dressed.  Stayed on sofa all day.   

Continue to drink more sips of water but did choke once today.  If I continue to choke I may cancel the Swallow Test till I can drink without choking.  According to the Youtube videos the test has you drink and eat various food items.  There is no way I will attempt to swallow anything but water at this time.  Water in my lungs is not as bad as some food particles that I might aspirate.  I would like to wait a while longer to see if I improve my swallowing.

Today I ingested through my PEG tube 890 calories, 50 grams of protein, and 16 ounces of water.

Sunday, September 3, 2017

PAINTED MY FRONT DOOR

I was able to swallow more sips of water today.  I'm hoping that I won't have to have the Swallow Test in a couple of weeks.

I am ingesting more calories in the last few days and it gives me more energy.  I have so many projects to tackle in my house that I have had to put on hold.  However, today I painted my front door which was in bad shape.  It tooks great and I felt good that I was able to do something constructive.  

Tomorrow I may finish painting my bedroom.  There is just a small wall that needs finishing.  I think I can handle that.

Today I ingested through my PEG tube 890 calories, 50 grams of protein, and 19 ounces of water.

I also started using my dental trays.

Saturday, September 2, 2017

CHANGES IN MY THROAT

Today I ingested through the PEG tube 890 calories, 50 grams of protein, and 11 ounces of water.  Am taking more sips of water and have not choked today.  

However, my throat is feeling different.  Don't know how to explain it.  I gargled with salt and baking soda this morning and for the rest of the day I felt that my throat was coated with the baking soda and it felt like it was burned.  I tried gargling with just water but that didn't help.  I thought maybe I used too much baking soda so I will stay off of that and just use my Magic Mouth Wash to gargle with from now on.  

Tonight I brushed my teeth and tongue and gargled with warm water and did feel some relief.  This new feeling also makes it feel as though my throat is closing up some.  Hopefully it is just swelling and will go down in the days to come.  I sure hope so.  I have read stories from survivors how they had to have surgery to open their esophagus due to damage from radiation therapy.  I'm so fearful that this will happen to me.  

I know how important it is to keep swallowing sips of water and soon to begin to swallow soft foods and soups.  But I can't imagine doing that right now.  It's so scary to swallow water which at times goes the wrong way and I choke.   And of course to add to all of this is the fact that I am going through this alone.  Sure wish I had someone to stay here with me for a few weeks.  

My neighbors check on me now and then but it's not the same as having someone here with me.  If I choke really bad there will be no time to get them to come over and help me to get medical attention.  That fear I have is probably preventing me from getting more progressive with my recovery.  No one should have to go through this horrible process alone.


Friday, September 1, 2017

DOCTOR'S APPOINTMENT

Saw the Oncologist today.  Got another script for pain meds.  Lost another pound.  He examined my throat and said it doesn't look too bad.  Said I'd be feeling much better in about another 2 weeks.

Got a haircut.  She did a good job of covering up the bald areas where I lost all the hair at the base of my neck. 

Today I ingested through the PEG tube 704 calories, 43 grams of protein, and 20 ounces of water.

Thursday, August 31, 2017

MORE PAIN MEDS NEEDED

Called the Oncologist today to request another script for pain meds.  He does not want to give me a script without seeing me in the office.  So I have an appointment tomorrow at 1:30.  

Not sure why I have to see him.  He's always told me to just call him if I ever need any more pain meds.  Well, this is the first time I've called and even though I just saw him 9 days ago I have to see him again with nothing new to report.  

I had never taken the full dose of pain meds in the past as I had relief with less of a dose.  Well, now I'm taking the prescribed dose and am running out sooner and that's why I'm needing another script.   Sure hope I don't start getting the runaround about pain meds.  This is not the time to doubt me about what I need for pain.  This is the time I was warned about.  The weeks after treatment is complete are the worst.  It is 14 days today since my last treatment.  Oh well, we shall see.

Today I ingested through the PEG tube 614 calories, 45 grams of protein, and 16 ounces of water.


Wednesday, August 30, 2017

NOTHING NEW TO REPORT

I went to fill up my gas tank today.  Took the dogs for the ride.  They were so excited that they were going somewhere.

Didn't do anything but watch TV and sleep on the sofa.  I took a few sips of water today and did not choke.  Glad for that. 

Today I ingested through the PEG tube 626 calories, 51 grams of protein, and 22 ounces of water.

Tuesday, August 29, 2017

FLOODING IN MY HOUSE

Had a good night's sleep considering how I spend my nights.  I'm up every 3 to 4 hours to take pain meds and water and to urinate.  Have no trouble going back to sleep.

This morning the thunderstorm woke me up and I went downstairs to see that water was coming into my back room and the yard was flooded.  I started to move things up off the floor and transferred all the cat's stuff like food, water, and litter boxes into another room.  


When the rain let up I started to sweep water out of the house into the back yard.  I was a bit fearful that I was going to have a coughing spell as I had not done my morning routine yet.  So I stopped and took time to gargle and tube feed.

My brother came by to see if he could help but I had already taken care of everything.  We're going to get more flooding in the next few days from the storm Harvey.  I'm not sure what shape I'll be in to take care of more flooding of my house.

Slept most of the day.  Did not leave the house. Did not walk the dogs.

Today I ingested 540 calories, 62 grams of protein, and 16 ounces of water.

Monday, August 28, 2017

CHOKING AND GAGING MORE THAN USUAL

Had a bad episode this morning when I woke up.  It was time for my throat cleaning which consists of brushing my teeth, gargling with the Magic Mouth Wash, then feeding through the tube with protein drink, Xanax, and pain meds.  I do this every three hours day and night.  It gives me a lot of relief.  If I vary the routine I suffer for it.  

This morning after brushing my teeth my throat started having spasms of sorts.  Don't know how to explain it.  I couldn't stop coughing and choking and had trouble breathing.  I hurried down stairs to prepare the magic mouth wash I use to gargle.  Within a few minutes it was under control but I was shaking pretty bad.  First time this has happened and it was scary.

Still taking the pain meds every 3 hours which keeps the mucous down as well as calms the throat where I don't have episodes.

Slept most of the day.

Today I ingested 736 calories, 51 grams of protein, and 18 ounces of water.

Sunday, August 27, 2017

SCARED TO SWALLOW

Did a load of laundry today.  Also walked the dogs.  Other than that, I slept on the sofa.

Trying to take more sips of water but did choke a couple of times.  Read somewhere that I should swallow sips of water at least 8 to 10 times a day as exercise for my throat.  I had been doing only 2 or 3 times a day.  So today tried to increase the number of times but when I choked I got scared and lost my courage to continue.

Today I ingested through my PEG tube 706 calories, 65 grams of protein, and 26 ounces of water.

Saturday, August 26, 2017

FINALLY BATHED DOGS

This morning I felt well enough to give my little Shih Tzus a bath.  Poor little things had not had a bath in over 6 months.  I was very careful not to damage my PEG tube as I leaned over the bathtub to scrub them with their shampoo.  They smell wonderful now.

Didn't do anything else but sleep the rest of the day.

Today I ingested 1116 calories, 83 grams of protein, and 16 ounces of water.


Friday, August 25, 2017

SWALLOW TEST

Today I ingested 926 calories, 69 grams of protein, and 16 ounces of water.

I am having dreams about food now.  Just some weeks ago I would have waves of nausea if I saw food on a commercial.  I still have a couple of months to go before I will be able to eat soft foods but I'm dreaming of foods that I can't have.

The hospital called me today to set up an appointment for a Swallow Test to see if some of the sips of water I take are going into my lungs.  Not every time but most times I choke when I drink a sip of water.  So I'm afraid to drink and just use the PEG tube for all water intake.  However, I will have problems with throat muscles and memory of how to swallow if I don't keep it up every day.  My appointment is for September 21st at 10:15am.

Thursday, August 24, 2017

WATER INTAKE

Renewed my driver's license today.  Don't have to worry about that for another 6 years.  Didn't have to wait in line all day at the DMV as there is a private office that does the renewals now.  Took about 15 minutes and I was on my way.

Did some weed eating in my backyard this afternoon.  Rain is coming and I want my yard cut short for it will be awhile before I can cut it again.  Forecast gives rain for the next 5 days.  I'm so happy that my strength is coming back.  I still spend a lot of time on the sofa napping but I can tell I'm getting stronger every day.

Today I ingested 760 calories, 64 grams of protein, and 20 ounces of water.  I fully intend to increase my water intake but am struggling with the concept of pushing water down the tube every hour.  My stomach has shrunk and a couple of ounces at a time, along with a protein drink every 3 hours, makes me very uncomfortable.  Reaching 64 ounces of water a day is just not something I think I can do.  I would be happy if I could do half of that.




Wednesday, August 23, 2017

PAIN MANAGEMENT

Had appointment with Radiation Oncologist today.  He examined my throat and listened to my lungs.  Said he would bet money that there is no cancer in the lymph node anymore.  He said he's always right about these things.  I sure hope so.  I will see him again in 2 weeks.

Next week I see my ENT doctor who may scope my throat and see if there is anything left that looks like cancer on my tongue.  I won't get a PET scan for a while yet.

We discussed the lymphedema in my neck and I told him I am doing exercises for that cause I'm afraid it will get larger.  He said that it will never turn to cancer and not interfere with breathing and that if it does get larger there is a surgery that can be performed for that.  

I asked if I might have scar tissue in my throat as I have trouble swallowing sips of water.  He said he would order a swallow test to determine if that is the case.  He wants me to heal a few more weeks before we do anything else.  My throat is really fried.

I asked when I should start using the Fluoride Dental Trays and he said maybe in a few weeks depending on how my mouth is healing.

I asked for more pain meds and he gave me a script.  I told him how it felt like razor blades in my throat when I swallow the mucous or the sips of water.  He told me not to be a martyr and go ahead and take the full dose of 15ml at a time.  I agreed.  He said that the next two weeks will be the worse of all and I'll need all the pain management I could get.  He assured me that in about 3 weeks I'll see a big improvement in the degree of pain.  I sure hope so.

Today I ingested 806 calories, 95 grams of protein, and 18 ounces of water.

I also lost 2 more pounds and now weigh 160 pounds.










Tuesday, August 22, 2017

THANK GOODNESS FOR HYDROCODONE

Did feel a little more energy today.  I vacuumed the downstairs area and the cat's room.  That wiped me out.  When I take a large dose of Hydrocodone I tend to have more energy.  Probably because I have less pain.  Not sure. 

The inside of my mouth is so burned up.  My tongue and roof of my mouth is like sandpaper.  Still feels like swallowing razor blades when I swallow the mucous.

Today I ingested 676 calories, 79 grams of protein, and 18 ounces of water.  Not a good day.

I see the Oncologist tomorrow.  Will ask for more pain meds.


Monday, August 21, 2017

SLEPT THROUGH THE ECLIPSE

Got cleaned up and dressed this morning which was a big accomplishment.  Went to the store for supplies.  Wasn't as weak as I have been in the past but still couldn't wait to get back home.  Did a little laundry and cleaned by bathroom a little.  Haven't been able to do much housekeeping in the last couple of months.

Today I ingested 712 calories, 40 grams of protein, and 24 ounces of water. 
.
I hoping that once the pain in my throat becomes less severe I will be able to drink water as well as push it down my PEG tube.  I'm really concerned about not getting enough water in order to help in the healing process.  

Another big concern is that my ability to swallow will be in need of some exercise.  I'm just so afraid to aspirate now when I take sips of water.  I cough a lot after swallowing.  Sometimes I feel the water come back up into my throat and I have to keep swallowing several times to get it to stay down.  

Some cancer patients have scar tissue that forms and closes up the throat and they have to have a trach and continue to use the PEG tube the rest of their life.   I sure hope that doesn't happen to me.

I'm doing some exercises for my lymphedema in my neck.  The purpose is to try and get the lymph fluid to disperse as it can no longer do so on it's own due to the radiation damage.  It just takes a few minutes a day and easy to do.

I slept through the eclipse today.  I forgot all about it. 



Sunday, August 20, 2017

A QUIET SUNDAY

Last night I woke every few hours due to throat pain.  The label on the pain med states 15ml every 6 hours.  I have been taking only 5ml every 3-4 hours.  Last night I took 10ml every 3 hours.  It provided me a better night's sleep.  It also helps to dry up the mucous which is what chokes me as it pools in my throat.

Today I spent on the sofa again - sleeping on and off.  I'm hoping tomorrow I will have the strength to bathe and get dressed to go to the store for some supplies.

Today I ingested 822 calories, 54 grams of protein, and 20 ounces of water.