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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. 
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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

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.


Wednesday, August 2, 2017

TWENTY FOURTH TREATMENT TODAY

Sad that I had to spend my 70th birthday getting a radiation treatment but am hoping that next year I'll be celebrating my birthday on a beach somewhere - and without cancer.

Saw the Dietician today and we discussed what protein drinks I should be drinking.  The ones I have been on don't have enough calories so I'll be looking for the ones for diabetics that have more calories.  She gave me the names of what to look for as well as some coupons.

Came home and took another 1/3 dose of pain meds and took a nap.  Then my neighbors came over to wish me a Happy Birthday and brought me a present and a nice card.  I enjoyed having company and the little Shih Tzus really had a good time getting all the attention that they have not been getting from me.  The poor little babies cried when my friends left.  I just don't have the energy to play with them.  I feel really bad about that.

My son called me today and we had a nice chat.  I had trouble talking at first so kept taking small sips of water which helped.  We usually have hour long conversations but it was really hard to talk today.  I felt good after hearing from him. 

Today I ingested 37 ounces of protein drink, 860 calories, and 75 grams of protein.


Tuesday, August 1, 2017

TWENTY THIRD TREATMENT TODAY

Got a call from the cancer center this morning informing me that Humana has indeed approved my pain medication after receiving a pre-authorization from the Oncologist.  The clinic then sent it by FAX to the pharmacy.  I placed a call to the pharmacy and spoke to the person who helped me when I purchased the medication for $186.  Explained to her that she would be receiving a FAX and she told me to come in and bring my receipt and credit card and she will reimbursement me.  I told her I would try and be there tomorrow.

You have just got to be on top of every little detail in this fight for your life.  I know that there are some sick people that don't know how to fight for what they feel is unjust and just pay the price and that breaks my heart.  

I'm sick and weak but my mind is alert and in fight mode.  Let's see what else will come my way and I will have to spend hours or days in order to remedy the situation.  This is a drain on my energy and I should not have to worry about anything but getting treatment and keeping a positive attitude.

Took my first dose of pain meds today as my throat is getting worse after every treatment.  Today was causing lots of gagging and coughing and pain.  I did not take a full dose but only 1/3 of what was prescribed and got some relief.  In time I know that I will need the whole dose but for now a little goes a long way.

Today I ingested 40 ounces of protein drink (4 drinks), 32 ounces of water, 720 calories, and 60 grams of protein.