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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.

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.