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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.  

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.