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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. 

Monday, July 31, 2017

TWENTY SECOND TREATMENT TODAY

Called Humana Insurance this morning and spoke to a representative for 45 minutes in order to resolve the problem I have with their refusal to pay my pain med prescription.  I was put on hold 3 times and then was told 3 different reasons for the refusal.  They even went so far as to say that it was not on their formulary.  I was on  their website looking at their formulary and it was indeed on it.  I also explained that this medicine has been paid by Humana at $33 back in June.  And now they want $186.

The last explanation they gave me was that the Oncologist would have to get a pre-authorization from them stating that this is the drug he wants me to have.  They will send him a FAX and after he fills it out and sends it back they will decide.  When I spoke to my Oncologist today before my treatment I explained all of this to him and he agreed to to so.   However, he also said that he has never had to do this in his career.  

Today I've ingested 39 ounces of protein drink (4 drinks), 880 calories, 59 grams of protein, and 30 ounces of water.  I'm not even half way to where I'm supposed to be.  I'm still losing weight but they don't seem to be worried about it.  I get weighed every time I have a treatment.  Today I am at 163 pounds.

The mucous is still really bad and I gargle often.  Suction machine helps.  Having weekends off from treatment is nice.  But Sunday afternoon was the first time I felt good in a long time.  No nausea, little mucous, and no pain.  Today was back to feeling awful.


Sunday, July 30, 2017

ANOTHER BOUT OF CONSTIPATION

Don't know why I would have another obstruction when I'm not taking any pain meds yet.  Took some Miralax down my PEG tube hoping this will remedy the situation.  I guess it's all that milk.  I've never drank milk in my life and have suffered from lactose intolerance in the past.  And now that's all I'm ingesting.

All I'm taking into my body are 3 protein drinks a day and lots of water.  I'm not eating anything by mouth - just sips of water all day so I can keep my swallow muscles strong. The taste of anything on my tongue is unbearable.  So from now on it's just the PEG tube.  I tried another smoothie but just can't stand the taste so won't be doing that any longer.  

Three protein drinks a day is not meeting my requirements for calories and protein.  It would take 7 a day to reach the numbers the dietician gave me.  How in the world will I be able to do that?  

I'm crushing my blood pressure meds and my Xanax for administering into my PEG tube with no problems.  I mix the powder in water then put it in with the protein drink.  

Today I've had 43 ounces of protein drink, and 28 ounces of water. and 730 calories.  I've ingested 4 protein drinks - my last one at 9:00pm.  To ingest 3 more a day I may have to do so during the night.  However, you are not supposed to lie down for 30 minutes after feeding through the PEG tube.  I guess I'll figure something out.


Saturday, July 29, 2017

HUMANA DECLINED TO COVER MY PAIN MEDS.

Took in a little nourishment (about half a bottle and my 4 ounces of water) this morning so I could go to the pharmacy to get my script filled.  Still feeling very weak.  I needed some more Glucerna so went to Walmart.  Gave the script to the pharmacist and he said they didn't have any and wouldn't have any till next week.  

OK, so I'll go to Target.  While there I asked another pharmacist what pills I can crush to put down my PEG tube.  She said all of them but she was not certain about the Fenofibrate for my high cholesterol.  She said she would call the company and call me with an answer.  I got the few supplies I needed and left.

I was getting a little weaker and thought I should go home but I drove on over to Target and submitted the script to the pharmacist who said they didn't have enough to fill the script.  She was kind enough to get on the computer and ask another pharmacy if they had any and they said yes.  

So off I went to another pharmacy.  By this time I was sure I was going to faint.  I was light headed and needed more water down my PEG.  I sat down while the pharmacist checked with my insurance company.  I wasn't concerned because they had approved this medicine several times before when I had my tonsil removed.

A few minutes later the pharmacist came out to tell me that Humana said this drug was not on their formulary and would not cover it.  The cost would be $186.69.  I was shocked.  Last time I only had to pay $33.89.  I told her to go ahead and fill it as I will be needing it.  

It was a good thing I was sitting down when she told me this.  The nausea set in and it was all I could do to sit in that chair.  I started to cough and choke so drank some water I carry with me.  The pharmacist gave me a puke bag cause she could see I was getting sick.  I hurried at check out and hurried home.

Used my PEG to get some nourishment and took my morning Xanax that helps with the nausea.  I crushed it and put it in with the liquid formula.  By this time I was shaking pretty bad.  I knew I could make a quick trip to Walmart but this wound up taking over an hour and I am just too weak to last that long driving or walking or doing anything.  Never again.

Once I started to feel a little better I got on the phone and tried to reach Humana.  Just recordings.  Went online and wrote them a message asking for an explanation.  Should hear something on Monday.  The pharmacy said that if I can get this straightened out they would reimburse me.  I sure hope so.



 

Friday, July 28, 2017

TWENTY FIRST TREATMENT TODAY

So glad it is Friday and will have a couple of days to recoup.  I'm really weak tonight and having problems swallowing.  Only drank a can of beef broth today.  Didn't have but one protein drink today - only half at a time.  Still flushing my PEG tube with lots of water.

For the first time I'm feeling a burning in my throat.  Drank some liquid Tylenol and had a chocking spell with it.  I'll put it down the tube next time.  My throat is inflamed and swollen.  Still haven't gone to the pharmacy to fill the script for pain meds.  Hope I'm strong enough to do so tomorrow.  

I spend all of my time on the sofa.  Very tired after treatment.  Very tired all the time.  Using the suction machine often.  Still gargling with salt and baking soda.  Still using the Biotene Mouth Rinse.  Still sipping water all day and at night.  Still using the cool mist humidifier day and night.  Still using Aloe Vera on my neck.  Still changing my stoma dressing every day.  

Going into week five on Monday.  Still a long way to go.


Thursday, July 27, 2017

TWENTIETH TREATMENT TODAY

The suction machine was delivered today.  They set it up and showed me how to use it.  I can get to the far back of my throat with the small canula and get all that mucous out easily.  It's back in less than 15 minutes but it sure is a big help to have the machine.

Saw the Oncologist today and gave him an update on my symptoms.  Told him that I was aspirating at least once a day which makes me gag and choke and cough.  He didn't respond to this.

He is amazed that I am not in any pain.  I am in week 4 and he implied that most folks are taking pain meds at this point.  He insisted on giving me a script of liquid Hydrocodone in case I started having pain over the weekend.  I see him again on Monday.  He said that if I make it through all this without pain meds that it would be one for the books.  However, I'm thinking the pain is on it's way during weeks 6 and 7 and the weeks following treatment.

He also asked how did I go about getting the suction machine.  I explained that the ENT doctor wrote a script that I took to the Pulmonary Care Center.  Showed them my insurance card and that was it.  He wrote the name of the center down and said that he may need this info in the future.  I was more than glad to help.

Tonight I was having hunger pains and so prepared to have a protein drink down my PEG tube.  Some drinks are thicker than others and sweeter than others and go down faster.  Well, it seems that this one went down too fast and I felt awful afterwards.  Came close to throwing up.  So from now on I might just do half a bottle at a time.  It's been an hour and a half and I'm still nauseous and want to throw up the drink.  It does not seem to be digesting but just staying in my stomach.  I just can't handle that milk and sugar.


Wednesday, July 26, 2017

NINETEENTH TREATMENT TODAY

Picked  up the script for the suction machine today.  Took it to the supply place but they were out to lunch.  Returned after lunch and submitted it along with my insurance card.  I was told to have a seat while they contacted my insurance company.  After 30 minutes I told them I had to leave to get to the clinic for my treatment.  They said they would deliver it tomorrow.  

For those doctors out there who don't know how to write an order for a suction machine for a throat cancer patient, here is how it's done.


It's getting harder to swallow as my throat is swollen.  I tried cottage cheese today and had to spit it out.  I can still swallow pudding, clear broth, and chicken soup.  Couldn't take any of my pills today.  Can barely get down half a Xanax with coke and pudding as it stays stuck in my throat.

I'm having a reaction to the protein drinks.  Every time I pour the protein drinks down my PEG tube I get immediate gobs of mucous in my throat.  This does not happen when I drink beef broth or soup.  I just can't handle all that milk and sugar.  I'll ask the Dietician tomorrow if there is anything else I can nourish myself with besides all those milk products. 

Tomorrow I'll speak to the pharmacist about the pills that I can and can't crush to put down my PEG tube.  Meanwhile I am not taking any of them.  They are just too big to swallow.

My neck is still itching a lot.  I keep it coated with Coconut Oil and Aloe Vera lotion as well as Cortizone 10.  It is now turning red and is tender.  This is my 4th week of treatment.



You can see the lymph node in this photo.  Not as big as it was.  In fact, it is about half the size it was at the beginning of treatment.


Tuesday, July 25, 2017

EIGHTEENTH TREATMENT TODAY

I have a new reaction to the radiation today.  My neck has some small bumps that itch really bad.  I am putting  Cortizone 10 on and it gives me a lot of relief.  Also am putting Aloe Vera lotion as the redness is starting to set in.  This is the beginning of one of the issues that will cause intense pain in weeks to come.  I'm also loosing a lot of my hair.  Little short black hair strands are everywhere.

I did my first PEG tube feeding today.  Grossed me out.  I poured a large bottle of Diabetic Glucerna Protein Drink into the 2 ounce syringe slowly, and filled as it emptied with gravity.  Even though it is not going through your throat and over your tongue you can still taste it... and it's awful.  Flushed with 2 ounces of water before and after so my stomach was full.  In fact, too full which made me nauseous.  I'll have to do it much slower next time.   Next step is crushing my pills in order to put them down my PEG tube.  I can no longer swallow pills as my throat is swollen.  I'm learning how to on Youtube.  I still have to take my blood pressure pill, high cholesterol pill, and diabetic pill.  However, only my blood pressure pill can be crushed.  Will have to talk to my family doctor about changing the other two pills to something else.

I drank more of my Hulk Smoothie (2 ounces at a time is all I can do) which gives me a boost of energy and then had some beef broth later around lunch.  Having increased my water intake I am not as nauseous as I have been.  I'v stopped taking the Zofran for nausea as it makes me more nauseous.  I'm controlling the nausea with Xanax three times a day as well as taking in more water through my PEG tube.  I'm also sipping water all day long and at night as well when I go to the bathroom.  The cool mist humidifier by my bed helps keep my throat moist.  Water intake is crucial to fight off the effects of radiation poisoning.  I'm still not taking in enough but will increase it more in time.

Called my ENT doctor today to request an order for a suction machine to help get this pasty mucous out of my throat and mouth.  His office called me this afternoon and said the script is waiting for me at the front desk.  Thank You Dr. Beyer.  I'll pick it up in the morning and go to Pulmonary Home Care to pick up the unit.

I am going through a roll of paper towels a day in order to scrape out my mouth after gargling.  This mucous stuff is awful.  It gives me a little relief but is back in less than an hour.  The suction machine will be a big help in this battle.

The good news is that I am now half way through with treatment.


Monday, July 24, 2017

SEVENTEENTH TREATMENT TODAY

Mornings are the hardest.  I know I have to eat something but I'm not hungry.  First off I have to brush my teeth and scrape all the mucous out of my mouth.  Then I go downstairs and put 4 oz of water down my PEG tube.  Now it's time to decide what I am going to try to eat.  Today I took a few bites of scrambled eggs and drank some chocolate milk.  I should have had a protein drink but they taste so bad I just keep putting it off.

For lunch I had broth and 4 more ounces of water down my tube.  I was feeling weak so I decided to go to Smoothie King and try one of their high calorie and high protein drinks.  Got a small one, 20 ounces, 964 calories, and 25 g of protein.  I tried to eat a few bites but it was grainy as it had strawberries in it and it hurt my throat.  So I may try another one without berries.  Just when I though I had found something I could tolerate I realized it had 125 g of sugar.  There are some smoothies with less than that so I'll just have to try some different ones.  I did feel a bit more energetic after about 30 minutes.  

Went to the center and had my treatment.  Today was the day I see the Oncologist.  He asked about my PEG tube leak and I said no more problems with that.  This is week 4 and he informed me that it was time to start using my PEG tube for feedings.  

I told him I was not in any pain and he said if I needed something for pain to get something over the counter.  I let that slide for today.

I told him my biggest discomfort was the Mucositis.  I explained that I gargled every hour and still had to dig in my throat with my finger and a paper towel to clear it out and that was barbaric.  I asked for a suction machine.  He said he had not ordered a suction machine in over 20 years and for me to ask my ENT doctor.  He then looked at my throat and admitted that there was a lot of mucous in my throat.  

In fact, I actually coughed while in treatment on the machine where you are supposed to remain still.  I told him that I had asked my family doctor for an order but he said that it would be up to my Oncologist.  Now my Oncologist is passing the buck to my ENT doctor.  If they weren't so expensive I would buy one myself.  He could have at least recommended Mucinex 1200 liquid.

I just wanted to leave his office and go home.  Didn't even ask for a liquid nausea medicine as the one he gave me makes me gag while it melts on my tongue.  Why give a person who is nauseous something that tastes awful and which takes an hour to dissolve on their tongue?  It makes no sense.


Friday, July 21, 2017

SIXTEENTH TREATMENT TODAY

Had nausea all day again today.  There's got to be something other than pills that melt on your tongue.  It is so nauseating to wait for the Zofran pill to dissolve.  I'll ask next week.

I bought some Xylimelts today to help with dry mouth.  Tried one but had to spit it out.  Very nauseating.  Also bought some sugar free gum but haven't tried it yet.    

I can still remember how some foods taste and while shopping I bought some hot dogs, honey ham, cottage cheese and ice cream.  Can't eat any kind of meat.  The minute it hits my tongue it tastes like cardboard.  I had a few bites of cottage cheese but it soon tasted awful.  The only thing that I could enjoy was the raspberry ice cream.  Coke is starting to taste metallic as well.  I use my PEG tube for all water as it tastes like metal.

Had to hire someone to cut my grass today.  I am just too weak to do it anymore.  My back yard had never looked so bad.  Weeds everywhere.  He did a good job of cleaning up the mess and will be back in 2 weeks.

I use the salt/soda rinse every hour to get the mucous out of my throat and off my tongue.  I brush my teeth often.  I use Biotene mouth rinse for dry mouth but it doesn't last long.  I rub my neck with Aloe Vera every night.  It is starting to turn a light pink.  It will soon be red.  

Will be going into my 4th week next week.  That's when they say it begins to get bad.  I guess they mean the pain.  I'm not in any pain right now but I'm a 10 on the scale of discomfort.  Sure wish it was all over.


FIFTEENTH TREATMENT TODAY

Still driving myself to the Cancer Center.  Saw the Oncologist today.  Very short visit.  All things have improved.  Will see him again on Monday.

Today was not a good day for me.  I took the nausea medicine late and the nausea snuck up on me.  Once it's there it is very hard to control it.  So today I don't want to eat anything.  Drank my protein drinks.   No breakfast.  Some broth for lunch.  Soup for supper.  I'm hungry and nauseated at the same time.  Misery.

Had some company today.  My neighbor Carolyn and her dog Prince came by as well as my friend Sylvia and her daughter Leslie.  It is really nice when friends stop by.  Even though I'm feeling bad it lifts my spirits.

Wednesday, July 19, 2017

FOURTEENTH TREATMENT TODAY

The Diflucan medicine worked.  This morning my mouth no longer had any white patches.  Sure hope it doesn't come back but it probably will.

I have no appetite and am drinking my 3 protein drinks as instructed by my dietician.  I have no trouble swallowing.  I just can't stand the taste of food any longer.  Even when there is no food in my mouth I can taste cardboard.  I was a big water drinker but it now tastes like metal.  I can still manage coke but it is starting to taste bad as well. 

I can eat chicken noodle soup, beef broth, clam chowder, yogurt, and tonight I had a pancake with syrup.  I hope I can keep this up.

I figured out a way to get the needed 64 ounces of water down every day.  I decided to use my PEG tube every hour.  I'll inject two syringes of water every hour and then I won't have to taste it.  Each syringe is 2 ounces so that's 4 ounces every hour.  Along with the protein drinks and soups I'll really be getting the amount of liquids they say I need to assist in my healing.

I am using the salt, soda, and water rinse many times during the day to clear the mucous out of my throat and mouth.  Also used the Magic Mouth Wash a couple of times but it is not really needed just yet.  It numbs my whole mouth for about 30 minutes but it tastes so bad and gags me.  When the real pain starts I'll be happy to have it. 




Tuesday, July 18, 2017

THIRTEENTH TREATMENT TODAY

Went to the pharmacy early this morning to pick up the Diflucan for the thrush I have in my mouth.  Took it but don't see any improvement in the last 12 hours.  In fact, it is worse.  Maybe tomorrow.

Keep rinsing my mouth every couple of hours with salt, baking soda, and water to help with the mucous.  This afternoon finally got the Magic Mouth Wash my family doctor ordered for the mucous.  However, when I spoke with the pharmacist she said that he did not order any anti fungal agent to be added to the mix - like Nystatin.  So it will not help with the white patches all over my mouth and down my throat.  All it contains is Lidocaine, Benadryl, and Maalox.  I'm supposed to swish for a whole minute or two then either spit or swallow.  Tried it once and it sure does numb my whole mouth but doesn't last very long.  Not supposed to eat or drink anything for 30 minutes.  So I get rid of one bad symptom (nausea) and another shows up.  What's next?

The pain on the right side of my tongue had stopped hurting for awhile but I felt it slightly again today.  When I look closely in the mirror I can see that when I don't have my partials in, there is a top back tooth that pushes down on that certain area of my tongue when my teeth are clenched.  I'm thinking that is the problem.  I read that the patient should not wear their dentures or partials during the day except to eat.  So that's what I've been doing.  However, there is no barrier for the tongue to rest on so it spreads out and that top back tooth smashes down on it.  Guess I'll have to try wearing the partials again.

Monday, July 17, 2017

TWELFTH TREATMENT TODAY

Yesterday I checked my mouth and throat and noticed that there were white patches all over the inside of my cheeks and throat.  Mucositis or Thrush, I don't know which.  I also have had more phlegm in my throat and on my tongue.  I gargle with salt and baking soda but it is hard to spit out as it sticks to my tongue.  I have to swipe a napkin over my tongue to pull the mucus out.  Some patients have used a suction machine to help with this. 

Called the Haydel Clinic this morning and asked to see Dr. Scott.  They squeezed me in for an appointment at 2:00.  I told him everything I had been through with the nausea and the Oncologist denying that Radiation causes nausea.  I asked what else could be causing the nausea and he had no answer but to say that my last blood work showed no problems.  I think he believes it is the radiation too.

He gave me a script for the thrush and also a mouth rinse that will deaden the pain in my mouth so I can eat.  It is called Magic Mouth Wash and contains Lidocaine, Benadryl, and Maalox.  Another ingredient can be added called Nystatin to help as an anti fungal for the white patches.   I asked for an order for a suction machine and he said he could not do that.  It would have to come from the Oncologist.   

Then I went in for my treatment at the center.  My friend Evelyn came with me.  When it was time to see the doctor she came in the room with me.  I wanted her to be a witness in case he started with that nonsense about the radiation.  However, he was on his best behavior.  He even conceded that there is a small percent of patients who do experience nausea with radiation to the head and neck.  So I finally got validation. 

I informed him that I had just seen my family doctor and he prescribed something for the thrush and mouth pain.  I asked if he was going to look at my mouth and he said yes of course I will.  Well, this was the first time he actually sat in front of me with a light and a tongue depressor and looked at the condition of my mouth.  So it looks like he is being cautious with me and doing what he is supposed to do.   

I left the clinic and came home to nap.  Later I called a couple of pharmacies to see if they would compound the Magic Mouth Wash as it does not come mixed in a bottle.  I was informed that Dr. Scott would have to specify exactly what ingredients he wanted in the Wash which he did not do on the written prescription.  So tomorrow I'll call him and request that he inform the pharmacy. 

My mouth is getting worse.  It is inflamed and food feels like sandpaper on my tongue and when I swallow.  Now I have a sore spot on the right side of my tongue that hurts when I talk and eat.  Both doctors looked at it today and I was encouraged by Dr. Scott to see my ENT doctor soon so he can take a look at it.  I'll make an appointment tomorrow.

I can drink the protein drinks with ease.  The Dietician told me to drink 3 a day and I am able to do that.  However, I still have to eat some solid food.  It is too soon to use the PEG tube.

The meds for the nausea do work for me but there is a chance that I will have some constipation so I'm taking a stool softener every day with the meds.  I spent 16 days with nausea before I was given something to combat it.  That should never have happened.  

I guess I will have to fight every step of the way through my treatment to get what I need to make me as pain free as possible.  I have the strength now to do that but the worse is yet to come.  Twelve treatments out of 35 and I almost had to be hospitalized for dehydration. - all because of nausea going untreated.  What will it be like in week 5,6, and 7?  Scares the hell out of me.

   

Friday, July 14, 2017

ELEVENTH TREATMENT TODAY

Worst day yet.  Nausea so bad all I could get down was a bowl of chicken noodle soup.  My family doctor's office called today to see how I was doing.  I told the nurse that I had horrible nausea and could not eat.  She offered to call in a script for nausea but I told her I had an appointment with the Oncologist today and that maybe he would give me something.

I drove to the treatment center, had my treatment, and  was on my way to the doctor's office when I was told that someone was there to see me.  I wasn't expecting anyone.   It was my nurse friend Ann.  I was so glad to see her and asked her to come with me to the doctor's office.  I wanted a witness to hear what he had to say.

Sure enough, he said that my nausea was not caused by the radiation.  He also said that it never has caused nausea in anyone.  It only will cause nausea if it is given along with chemo.

I couldn't believe my ears.  After a few seconds I looked at him and told him that I had just spoken to my family doctor and that he said he would call in a script for nausea if the Oncologist didn't.  Well, that set him on fire.  He left the room and returned with a script for nausea.  

Even as I walked away from him he continued to repeat himself and said my nausea was caused by something else and to get it checked out by my family doctor.  I didn't even look back at him when I told him I did not agree and left the center.

Ann sat outside with me for about 30 minutes as I was so upset and crying.  My sadness was not because I was so nauseous but because I now realized that I have an incompetent doctor.  What in the world is going to happen to me when it comes time for the real big guns to hit me, the real side effects and real pain?  Is he going to say the same ignorant things?

I drove myself home and Ann went to the store to get the script filled.  I took one at 5:00pm and it finally kicked in about 2 hours later after I had eaten some food and drink.  Tonight I'm feeling fine.

I see him again on Monday and it will not be pretty.  I have researched and printed lots of material from medical websites that state that radiation therapy does cause nausea in some patients.   I plan to hand this to him during our visit.  These Centers are all respected facilities.  And there are a lot more.

M.D. Anderson Cancer Center
Memorial Sloan Kettering Cancer Center
UNM Comprehensive Cancer Center
RadiologyInfo.ORG
Texas Oncology
Cancer.NET

Thursday, July 13, 2017

TENTH TREATMENT TODAY

Have only 25 treatments left.  Today was a really bad day for nausea.  Not much relief from using the salt, baking soda and water rinses.  Lots of mucus building in back of my throat.  I actually dig it out with a paper towel.  Rinsing doesn't work.  

I told the techs at the treatment center how bad the nausea was and I was offered two tips that they have heard from other patients.  Smell alcohol wipes and peppermint oil diffusers.  Poor things, they don't know what to tell me.  They know I need meds to help with this but the Oncologist doesn't think so.  I told them I would see my family doctor next week and get something for nausea.

Came home and ate some mac and cheese.  It went down well but later I almost threw it up.  I took some Pepto Bismol and almost threw that up as well.  Lots of gagging.  Decided to take the Bonine I purchased the other day.  It is mostly for motion sickness but I'm desperate at this point.   Getting a bit of relief from that. 

There is no way I can drink the protein drinks the dietician told me to.  Just the thought of it makes me gag.  If you can't get past the nausea there is no way to nourish yourself.  Even if I used the PEG tube I will still have the nausea and may throw up.  It's too early for all of this to be happening.  I can still swallow with ease.

I see the Oncologist tomorrow.  Maybe he will offer some meds at this point.  If not, I'll get some from my family doctor. 

Wednesday, July 12, 2017

NINTH TREATMENT TODAY

Woke up this morning with a big glob of mucus in my mouth.  I read about this happening and now know how it feels.  Can't swallow it.  I tried to spit it out but it sticks to your mouth.  I brushed my teeth and scraped my tongue but there was still some further down in my throat.  I then used the salt, baking soda, and water swish and this helped a little because it made me gag and cough and spit it out.  Now I know why some folks use a suction machine.  The mucus came and went all day today.

Got my second meals on wheels lunch today but couldn't eat much of it.  My taste is changing and foods are starting to taste bland and stick to my teeth as I have little saliva.

My nurse friend Ann came over today to fix my leaking PEG tube adapter.  It took just a few minutes and it was done.  The adapter only cost me $12.00 on the Internet.  The Gastro Office would not offer to replace it for me even though I asked for assistance in this matter.  

If a patient does not do their own research they are screwed.  My sympathies go out to the elderly who have no family and no one to advise them of the issues that can and will arise from all of this treatment and results of the treatment on our sick bodies.   How sad.

Met with the Dietician today and she is concerned about my weight loss.  She feels that I am loosing a pound a day and that she would want me to gain that weight back with the protein drinks she suggested.  I will have to drink about 3 drinks a day along with the foods I am eating.  She asked if I was taking anything for nausea and I explained that the Oncologist said the nausea was not from the radiation treatments.  We both know that it is.  She gave me some coupons for discounts on these protein drinks which can be expensive for the diabetic ones.  I drank one when I got home and it made me even more nauseous.   

The good news of the day for me was when I was told by Sarah at the Cancer Center that I had been approved for financial assistance at 100%.  What a relief.  I won't have to pay for any of my radiation treatments.  The adjoining hospital is also trying to get assistance for me to help pay for their costs.  This is such good news.

Tuesday, July 11, 2017

EIGHTH TREATMENT TODAY

Had my first Meals on Wheels delivered to me today about 12:15.  It was lima beans and rice with a link of sausage and lettuce, tomato, and cucumber salad with peach cobbler dessert.  Milk and bread were included but I don't drink milk and bread does not go down well now.  However, I did enjoy my meal.  It was so good not to have to prepare my own food, which is sometimes exhausting.  

Drove myself to treatment today.  While there, Sarah the Financial Advisor told me that I should have an answer to my request for assistance tomorrow.  I told her I also had an application from Camille to fill out and return to her for assistance.  Sarah explained that they were two different requests.  One was for Mary Bird Perkins Cancer Center and the other was for Terrebonne General Hospital.  Glad to hear that.  Hope I get some assistance from at least one of them.

Had my treatment which gets easier and easier each time then drove home.  Fixing a snack and then a nap.

Eight down and 27 to go.