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.

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.

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.

 

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.

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.

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.

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.

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.

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.

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. 

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.

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.

   

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

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. 

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.

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.

SEVENTH TREATMENT TODAY

Got a call from the Cancer Center saying that the machine is down and not to come in today.  I was a little disappointed as that would push my finish date back again.  

I took this opportunity to go into the hospital and speak to someone in financial services.  She corrected a bill I had received and advised not to pay it just yet but to wait to see if I would be approved for financial assistance.  Said my our of pocket cost for treatment will be $60 per treatment.  Gave me a form to fill out.  Then I went home.

A little later they called back and said I could come in at 6:15 for my treatment as they had fixed the machine.   So off I went.

Saw the nurse and she asked me a lot of questions about symptoms.   I told her about the nausea that comes and goes.  She wrote down what I said.

Then the Oncologist came into the room and looked at my throat.  Asked about my PEG tube adapter leaking and I informed him that I had purchased a replacement online and will have a nurse friend of mine install it.  He said I was doing great and that my lymph nodes had indeed reduced a great deal which is a good sign.  Wants to see me again on Friday.  Then I went in for my treatment.

Feeling pretty good right now.

SIXTH TREATMENT TODAY

Drove myself to treatment today.  All went well.  I only took one Xanax as I am getting more relaxed during treatment.  Still having mild nausea which got a little worse today.  Glad I'm off for two days before another treatment.

Came home and was hungry so got some Chinese - Won Ton Soup and Pork and Mixed Vegetables and enjoyed eating which seems to ease the nausea.

Tonight my throat is hurting just a little.  This is the first time.  My lymph node seems to be reducing in size which is good news.

Only have 29 more to go.

FIFTH TREATMENT TODAY - 30 MORE TO GO

Had an appointment with the Council on Aging to complete an application for Meals on Wheels.  The process took an hour and a half.  I'll start receiving lunch next week at around 10:00 am.  I'm thankful for that as I don't much feel like cooking anymore.  I'm still having bouts of nausea.  Today was all day long even after eating and drinking.  I didn't mention it to the staff at the cancer center as it is no use because they are convinced it is not from radiation treatment.  I'll find some OTC meds that might help.

Drove myself to treatment without any problems.  After treatment went to the financial office to discuss a recent bill I received for almost $500.  Again they found a mistake on the bill.  Said it was more like $250 but to speak to another worker who was busy at the time.  I was feeling weak so went home and will try again tomorrow. 

Came home and ordered some food from Applebees at 5:00 and ate then went to sleep.  The dogs woke me up at 7:00 asking to go outside.  The nausea was pretty bad at this time so I just let them out to the back yard.

FOURTH TREATMENT TODAY

Had an appointment with my ENT doctor today.  Told him about the bad experience I had with the Radiation Oncologist when he scoped me some weeks back.  I asked if he could scope me in the future and report to the Oncologist his findings.  He said I could request that from the Oncologist and see what happens.  He wants to see me again in two months.

I then went in to the Cancer Center for my treatment.  The nurse greeted me and asked how I was doing.  I again told her I was still having light nausea and she again dismissed it as not being caused by the radiation.  I replied that I relieve it when I increase my food consumption as well as drink more water.  She ignored this.

The treatments seem to get easier and easier each time.  Today I saw the eye of Electa 3 times and then it was over.  I hadn't noticed this before but that is a good way to gauge my time on the table.  Also, there is a noticeable reduction of my lymph node which is amazing to occur just after 3 treatments.

Then I met with the Dietician.  Very pleasant person who gave me information on how many calories I will need to ingest daily (1879) and how many grams of protein (92).  She also recommended Boost Glucose Controlled and Glucerna 1.2 or 1.5 in a can due to my diabetes.  Encouraged lots of fruits and vegetables.  I think I'll try doing that with smoothies.  There is a Smoothie King across the street from my house.   Very positive meeting.  I will be meeting with her on Wednesday from now on.

Drove myself to both appointments today.  Not a problem.

THIRD TREATMENT TODAY

This morning I was still suffering from pain in my rectum as well as bleeding.  I got online to search for something to apply externally.  Found something called Anorectal Cream with Lidocaine.  Also bought some medicated wipes at Walgreens.  The cream is expensive at $24 for a small tube but well worth it.  My pain now is minimal and I had a normal bowel movement today.  Still painful to do but not like before.  Then I clean up and apply more cream.  It is hard to sit in a chair and I spend most of my time lying on the sofa or in bed.  

My brother drove me to my 3rd treatment today.  I told the nurse about my bowel obstruction and she immediately said that was not from the radiation.  I find that strange as I read on various cancer survivor sites that radiation can cause constipation.   

I also met with my Oncologist who said we will meet every Monday then later on will meet twice a week.  He looked at my throat briefly.  I told him about the bowel obstruction and pain I have had in the last 4 days.  I told him it was  probably from the pain meds I had been on from the PEG tube surgery.  He said that may cause me problems later on down the road when I will experience much pain and will need lots of pain meds.  He said to continue to take stool softeners daily and mentioned Senokot which is what I am taking.

I then told him about the mild nausea and headaches that come and go and he said that was not from the radiation.  How can he generalize that everyone experiences reactions the same way?  I didn't argue with him but there are many stories online of cancer patients who experience nausea from the first treatment.

I had other questions but he referred me to the dietician who I will be seeing on Wednesday.  He gave me a script for Hydrocortisone cream 2.5% for my neck.  That was it.  A very brief meeting.  I am not comfortable with this doctor.  He has this habit of offering his hand to me for a handshake when he wants to end the session.  He did it 3 times today but I kept asking questions.  He did the same thing on our last meeting.  He seems unconcerned and I don't like him.  

JUST LIKE GIVING BIRTH

After 4 days of painful bowel obstruction, at 3:30 this afternoon I finally expelled the large stool.  It was extremely painful but I felt immediate relief.  Although I am still in pain from all the trauma done to my rectum, I can pass runny stool with little effort now.  Later, I eased the pain by placing my heating pad set on low to the area.  That helped with the pain a lot.  I will take a stool softener daily from now on.  I see my Oncologist tomorrow and will ask for a recommendation on a softener.  I don't ever want to go through that again.

I felt so good this evening that I cooked some shrimp and potatoes and enjoyed my first real meal in 4 days.  Hoping I get a good night's sleep tonight as I only slept a few hours last night.

I'm not sure if this obstruction was from the pain pills I was taking or from the two radiation treatments I have had.  I guess I will find out soon enough if it happens again while I continue treatment without taking pain meds.