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. 

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.

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.

  

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.

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.

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.

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.

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.

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.

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. 

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.

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.

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.

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.

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.

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.

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.

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

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.  Cancer 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.

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.

  

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.

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.

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.

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.

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.

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.