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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.

Saturday, August 19, 2017

SWALLOWING RAZOR BLADES

Another day on the sofa.  I tend to fall asleep on and off, only to be awakened minutes later choking with mucous in my throat.  I cough it up but can't spit it out so swallow it.  Disgusting.

Dogs are getting used to the routine that we are not going for a walk but that they will use the fenced in back yard to potty.  I think because I don't talk to them anymore that they feel unloved.  When I do force my voice out I don't sound like myself and can't form my words clearly.  I try to use hand gestures to get them to do what I want them to do.  It hurts to talk.

My throat pain is now getting to the point of pain that has been described by throat cancer survivors as swallowing razor blades.  I was wondering when that was going to happen to me.  I have had to double the amount of pain meds to 10ml every three hours.  At this rate, I'll need another bottle soon.  I have an appointment with the Oncologist in 4 days and will request another script at that time.  I may need something stronger so I can take less at a time.

Today I ingested 802 calories, 48 grams of protein, and 28 ounces of water.


Friday, August 18, 2017

THAT LAST TREATMENT KEPT ME DOWN TODAY

Cha Bu missing her daily walk.

Stayed most of the day on the sofa.  Didn't walk the dogs.  Did let them out into the back yard a couple of times.  My throat hurts a little more than usual.  Taking more pain meds and more often.

Today I ingested 712 calories, 40 grams of protein and 18 ounces of water.

I expect to feel better tomorrow and will increase my calories at least up to 800.

Thursday, August 17, 2017

THIRTY FIFTH AND FINAL TREATMENT TODAY

My brother drove me to treatment today.  Evelyn, Ann, and Carolyn met us there.  I had my treatment and then I gave the techs gifts I brought for them.   Some peace rock paintings that I did last year.  They seemed to like them.

Then we did the ringing of the bell ceremony.  I was given a Certificate of Accomplishment and there was a bubble machine shooting bubbles all around the room.   I rang the bell three times then several more times for photo shots.  One of my Radiation Technicians took photos with my cell phone for me.  And everyone else used their phones for photos and videos.  Here are some of the photos.





Enjoying the wet bubbles on my face, while Carolyn, Evelyn, Bob, and Ann look on.

Reading my Certificate

Ann is holding my mask that I get to take home.

Even on this photo you can see the large protruding area on the left side of the mask where the lymph node was the size of an egg.
Here it sits on a table in front of my fireplace.  It has flowers behind it which makes it look like a face.  Freaky.

Then it was time to see the Oncologist.  He told me that he was very pleased in my healing process.  My neck burns are minimal and the pain medication dose I take is small but adequate.  I am going to be seeing him again on August 23rd at 3:30.   He encouraged me to call if I needed any more pain meds.  I assured him I would.

 He said that I would be having a PET Scan in about 3 months.  That would show if the area at the base of my tongue is healed.  He is pretty sure that the lymph node is free of cancer.  He said that I could have a scope performed by Dr. Beyer if I wanted - in order to check on the base of tongue cancer.  I said that I would prefer Dr. Beyer to have the look down my throat.  I have an appointment scheduled on September 6th at 1:30.   

He also mentioned that I may have to see a therapist for the problems I have swallowing.  Also I have lymphedema in my neck caused by the radiation and may need to learn exercises to relieve that.

Then it was time to go home.  Evelyn and Carolyn brought me a door hanger.

I hung it on my front door.

Words on the back.

Thanks a bunch.  I really like it. 

Wednesday, August 16, 2017

THIRTY FOURTH TREATMENT TODAY

Only one left to go.  



Met with the Dietician today and she told me that she discussed with other co-workers about my case and they are all stumped as to how I am not losing weight on an intake of only 500 to 800 calories a day.  I assured her that I will be taking in more calories from now on by using the Glucerna 1.5 in the can.  I think my body is in starvation mode and my organs are being damaged by this.

Today I ingested 890 calories, 50 grams of protein, and 22 ounces of water.

Looking forward to tomorrow's last treatment.   Will be taking a photo of me ringing the bell along with friends and family who helped me through this ordeal.




Tuesday, August 15, 2017

THIRTY THIRD TREATMENT TODAY

Drove myself to treatment early so I could go to the Financial Office to submit paperwork requested in order to get approval for assistance.  Jennifer assured me that I would know something in a week and that no action to collect money owed by me would be taken.

Started ingesting the Glucerna I purchased online that initially made me sick.  So far I have not had any negative reaction.  I only ingest half the 8 ounce can at a time so that may be why I'm handling it so well now.  It has also helped me to have my first bowel movement in 3 days.

Today I ingested 890 calories, 50 grams of protein, and 21 ounces of water.  Getting the calories up but still not taking in enough water.  My shrunken stomach just can't handle all that liquid at one time.  I would have to flush my tube with 2 ounces of water every 30 minutes just to get half of the water I need to have in a day. 

Had a visitor today.  My friend Pat came by to see how I was doing.  Although it hurts to talk I managed to have a nice long visit with him.   My little dogs love him and gave him lots of little wet kisses.  
They really miss seeing the neighbors and taking afternoon walks.  I'm just not up to walking them at this time.  They give me these pitiful little eyes to say, "Why are you always on the sofa?  Why can't we go for a walk?"  I feel so sorry for them.


Monday, August 14, 2017

THIRTY SECOND TREATMENT TODAY

After treatment saw the Oncologist.  Asked for another script for pain meds.  He gave it to me and said if I needed anything else to call him.  He wanted to know if I wanted something stronger and I said no.  Should have given that more thought before answering.  Our last visit is in 3 days.  After that it will be every few weeks.

He felt my lymph node in my neck and said he is pretty sure that cancer is gone.  We did not discuss the base of my tongue primary cancer location.

He said that he is amazed at my ability to keep my weight steady.  I agreed that it is a mystery because I am not getting above 800 calories a day.  Some days only about 500 calories.  I mentioned that my body might be going into starvation mode and he agreed.  I'll be losing muscle mass as my body feeds off the calories throughout my system.  The human body will burn primarily free fatty acids from body fat stores, along with small amounts of muscle tissue to provide required glucose for the brain.  It could become a very serious condition if I continue to ingest less than 800 calories.   

Today I ingested 510 calories, 76 grams of protein, and 20 ounces of water.

Got the pain meds filled with no problems at CVS and took 2/3 of a dose when I got home as I was hurting pretty bad.  However, I will go back to 1/3 of a dose every 3 hours tomorrow.

I will also go back to using the cans of Glucerna 1.5 tomorrow.  I'll try half a can at a time and see if it will again give me abdominal cramps.  I still have not had a bowel movement in two days but continue to take the Miralax.  Hopefully I will tomorrow.



Sunday, August 13, 2017

I HATE PROTEIN DRINKS

Made it to the store for more protein drinks today.  I'm leary of the cans I recently purchased as I experienced severe abdominal cramps after ingesting - so I'm back on Boost for diabetics.

Today I ingested 410 calories, 68 grams of protein, and 20 ounces of water.  Not a good day.


THROAT PAIN GETTING WORSE

Today I ingested 740 calories, 36 grams of protein, and 18 ounces of water.  I had a hard time with one of my tube feedings.  The protein drink did not settle well and I felt very uncomfortable for hours after the feeding.  There were pieces of clotted milk in my tube which is usually clear.  

In the middle of the night I checked my tube and there was yellow bile backed up in it.  I was still feeling pretty bad from the protein drink that I took many hours before.  I didn't take any more protein drink till late this morning.  Only took half a bottle (4 ounces).  

Had no bowel movement yesterday.  This concerns me.

Almost out of pain meds.  Might be able to make it to my appointment tomorrow. 

Friday, August 11, 2017

THIRTY FIRST TREATMENT TODAY

Getting close to the end.  Only 4 treatments left.  Glad it's the weekend.  I need to have a break.  Fridays are always draining on me.  Five straight days of radiation takes its toll.  

Today I ingested 850 calories, 72 grams of protein, and 16 ounces of water.  I think I'm cutting down on water in order to fill my stomach with the protein drink to increase the calories.  My stomach has shrunk a good bit and fills up really fast when I pour the liquids down the tube.  I know I need more water but am trying to increase the calories for now.

Still having choking episodes in the middle of the night.  I am needing pain meds every 3 hours as that is as long as the 1/3 dose will last.  I'm getting low on the Hydrocodone and hope I can make it till I get a new script on Monday.  I'll probably need the full dose in the coming weeks as they say it gets worse for awhile before it gets better.  I've only been taking the pain meds for 10 days now.  I think I did pretty good not needing any till my 6th week of treatment.

I'm keeping the constipation at bay by taking liquid Miralax every day through the tube.  Between the milk based protein drinks and the pain meds I would really be suffering if not for the Miralax.

My neck is getting worse.  It looks like a few cracks are starting to form.  Not visible in this photo. 






Thursday, August 10, 2017

THIRTIETH TREATMENT TODAY

After my treatment met with the Oncologist.  Told him about the increase in throat pain and that if I were taking the 15ml dose as prescribed I would be out of meds by now.  I'm only taking 5ml every 3-4 hours - sometimes longer at night. 

I asked if there would be any problem getting another bottle.  He said that he would not be able to call one in but could write another script for it.  He asked if I had enough for the weekend and I said yes.  So I'm hoping to get a new script next Monday when I see him.  Sure hope I don't have any trouble getting the script filled like I did last time.

I only have 5 days of treatment left. 

Today I ingested 750 calories, 64 grams of protein, and 20 ounces of water.

I weighed in at 162 pounds today.  How in the world am I not losing more weight when taking in less than 1000 calories a day?  It's been 16 days since I've eaten anything by mouth.


Wednesday, August 9, 2017

TWENTY NINTH TREATMENT TODAY

Drove myself to treatment and afterwards had a meeting with the Dietician.  Told her I had ingested one can of the new Glucerna 1.5 last night and that it made me sick with horrible stomach cramps that lasted a couple of hours.  It's just too rich for my intestines.  So she advised to take only half a can at a time and see what happens.  

No one is really worried about my weight as it had been stabilized for the last couple of weeks.  I wish I had not purchased this case of Glucerna at $90.  I'm not sure I will be needing it.  I'm using the bottles from Walmart and they are working fine.  The last time I ate anything by mouth was July 24th - 15 days ago.

Left her office and went to the Financial Advisor to complete another form for financial assistance from Terrebonne General Hospital.  Will know something in a couple of weeks.

Today I ingested 510 calories, 54 grams of protein, and 20 ounces of water. 

I'm taking more pain meds as my throat is hurting more.  Had another bad episode at 4:00am this morning.  Had to gargle and take more meds before I could go back to sleep.

Only 6 treatments left before I get to ring the bell.








Tuesday, August 8, 2017

TWENTY EIGHTH TREATMENT TODAY

Drove to treatment today.  Left the clinic and went to CVS pharmacy to pick up the script waiting for me.  It was the Cortisone cream that was ordered the day before on Monday, the day I saw the Oncologist.  He had not ordered it at an earlier time as he claimed.  And he had not given me a paper script earlier as he had claimed.  I showed the clerk the paper script he gave me yesterday and she said it was for the same thing.  So I don't really need this script.

Came home and my grass cutter was in my back yard.  I told him I was going to keep cutting the grass myself.  He asked why and I said because the grass was a foot tall.  He said I would just have to be patient and wait till he can get to it.  I said no that I would do it myself.  Thanked him and walked back inside.

I have 7 treatments left.  Can't wait for it to be over.  They weighed me today and I am back to 163.  How in the world did I gain a pound since yesterday?

My case of Glucerna 1.5 arrived today.  It has 356 calories per 8 ounces of liquid, and 19 grams of protein.  So I will be getting more calories and less liquid per feeding.  That should help with my stomach feeling too full during feedings. 

Today I ingested 805 calories, 80 grams of protein, and 20 ounces of water. 

Monday, August 7, 2017

TWENTY SEVENTH TREATMENT TODAY

Had a better night last night.  Got up at midnight and again at 4:00am to ingest some water, protein, and pain meds through tube.  Slept well till 8:00 this morning.

Went to treatment and saw the Oncologist afterwards.  He asked if I had gotten the Cortisone cream he ordered for me.  I said I did not know of any scripts that were waiting for me.  I asked if he sent it to Walmart on the westside and he said yes.  He said he also gave me a paper script.  I told him I never got a paper script for Cortisone.  I have been using over the counter Cortisone.  He insisted that he gave me a script.  So he left the room and came back with a paper script for the medication.  He said that it was stronger than the OTC medication.  I think he is confusing me with someone else.  I never asked for anything for my neck.  I told him on several occasions that I had many lotions for my neck and that it was not a problem. 

Got home and noticed I had a call on my cell from CVS pharmacy telling me that my prescription was ready.  What prescription?  Is this the one that he said he called in to Walmart pharmacy?

Here we go again.

He also asked about my pain meds.  I explained that I was taking 1/3 of a dose 3 to 4 times a day.  He cautioned that I would not be able to get another bottle of the Hydrocodone once this one was empty.  Why?  I told him that my ENT doctor was able to get me two bottles of it when I had my tonsillectomy.  He said we would find a loop hole and try to get more if needed.  This was not something I wanted to hear.  I read about patients getting several pain meds at the same time due to the severity of the pain towards the end of treatment.  This is unbelievable.

I had to cut my own grass today as the guy I hired never showed up.  He said he would be back in 2 weeks.  That was 18 days ago.  I will continue to cut it myself and save the money.  He didn't cut it low to the ground anyway, and the next day it looked like it had not been cut at all.

Things just don't run smoothly for me.  It's always something.

Today I ingested 850 calories, 101 grams of protein, and 16 ounces of water.  Just not enough water.  Need 64 ounces a day.

When they weighed me today I expected to see more weight loss but I'm still 162.  This is surprising to me and to the doctor.

Sunday, August 6, 2017

GAGGING AT 4:00am

Had a real bad spell this morning.  Got scared.  Couldn't get it under control.  I can usually sip some water and inhale some cool mist and it eases up.  Not this morning.  I hurried down stairs and gargled with the Magic Mouth Wash mixed with a little water.  Took some protein drink, water, and some pain meds through the tube.  Went back to bed and sat up for 30 minutes inhaling the cool mist.  Finally went back to sleep.  

I have got to do something about these episodes.  I'm thinking about setting the alarm clock for 3:00am and ingesting some protein drink, water, and pain meds to last me to the morning feed at 9:00 am.  When the throat gets so dry that you can not swallow at all, not even mucous or water, it's very painful and frightening.  I can handle it during the day but at night I'm not aware of the dryness until it's too late and I wake up choking.

Stayed on the sofa all day.  Don't feel like doing anything.  It took all my energy to take a bath and dress myself.

Today I ingested 950 calories, 130 grams of protein, and 24 ounces of water.




Saturday, August 5, 2017

SATURDAY - NO TREATMENT

Was nice not to have to go to treatment today.  My friend Sylvia came by for a visit.  It hurts my throat to talk so the visit was short.

Tried to ingest more nourishment today.  I notice that when I ingest the protein drinks I quickly get the mucous in my throat.  

However, I also notice that when I take the pain meds (Hydrocodone/Acetaminophen) my throat and mouth stay much drier with almost no mucous.  Did not have to use the suction machine today.  Only had to gargle twice.  

Stayed on the sofa all day and watched movies.  Very little discomfort.

Today I ingested 860 calories, 122 grams of protein, and 24 ounces of water.



Friday, August 4, 2017

TWENTY SIXTH TREATMENT TODAY

Only 9 left.  Hope I can make it to the 35th one.  Took pain meds 3 times today (only 1/3 of a dose at a time) and besides it helping with the throat pain I noticed it dries up the mucous in my throat.  Who knew?

I'm also trying something else I had not tried before.  The Magic Mouth Wash that I was given weeks ago - used for swishing then spitting or swallowing - is being used in a different manner now.  I can not bring myself to swallow the awful stuff but it does numb the pain in my mouth when used.  So now I dissolve a little in some warm water and gargle with it then spit.  It gives my throat some relief and that's what I want it to do. 

Today I ingested 680 calories, 24 ounces of water, and 99 grams of protein.  Still not enough.  I'm supposed to be getting 1879 calories, and 92 grams of protein.  I ordered from Amazon the particular protein drink my dietician suggested for diabetics.  A case was $89 with free shipping.  Couldn't find it in any stores here in town.  It should be here on August 10th. 

So glad it's the weekend and I can take a break from radiation.  Next week starts week 6.  So close yet so far away.

Thursday, August 3, 2017

TWENTY FIFTH TREATMENT TODAY

Only 10 more treatments to go.  Two more weeks and I'll be finished with this horrible process.  My throat is getting worse after every treatment... it is really burnt on the inside and the outside. 

The nights are getting worse.  Last night I woke almost every hour gagging and choking.  Took a few sips of water and inhaled the cool mist from the machine by my bed and went back to sleep.  I think these episodes are also a result of my snoring which irritates the throat even more.  

So glad tomorrow is Friday and I'll have 2 days off to rest.  Then begins week 6.

Went to the pharmacy this morning and was given a refund on my pain medication.  So now the total cost was only $44 and the approval is good till December 2017.

Today I ingested 27 ounces of protein drink, 21 ounces of water, 620 calories and 25 grams of protein.  Not a good day.