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Journal entry by Linda DeLuca

The Journey will officially begin tomorrow, January 3rd at 2pm.  This is when Paul will be receiving his first Radiation treatment.  We will also receive "the schedule".  They tell us we should be able to have the treatment at the same time every day.  We hope to get early in the morning. 

I will try to make entries into the journal everyday.  If I miss a day, I promise to catch up on the next day!!  We love you all!!  Please keep Paul in your prayers. 

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Journal entry by Linda DeLuca

It has been a long day.  Paul decided to go into work today since the radiation was not suppose to start until 2pm.  It was definately a struggle since Sat & Sun his mouth & tongue was inflamed and swollen.  Pain pills didn't really seem to help much.  It made swallowing a chore.  Even the three bottles of Ensure he was suppose to be drinking was a challenge.  Forget the idea of chewing any kind of real food.   

I received a call at 1:15p telling me Paul's radiation was postponed until tomorrow afternoon.  But he was already on his way, so instead the radiation oncologist did a simulation run.  He'll be ready for tomorrow at 3:20pm.  The Chemo is still as scheduled.  This will start at 9:00am tomorrow, Jan 4th.  If we thought today was a long day, wait until tomorrow!! 

Paul went and picked up his custom made "trays" from the dentist today.  Once radiation starts, his salivary glands will dry up.  Without saliva, your teeth could actually rot and fall out!!  Therefore, the custom trays the dentist made will be filled at night with flouride.  This will help keep his teeth healthy. 

For those of you who may be checking the site daily, I will post updates to the journal in the evening.  Once we get home, make dinner, do dishes, flush his feeding tube, feed the cats, I should be ready to sit down some time between 8-9pm. 

We want everyone to know we appreciate all of your wonderful, strong and encouraging support!!

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Journal entry by Linda DeLuca

It's official!! Paul had his first full day of Chemo and Radiation.  It was a slow start, since the medical oncologist's office wanted to verify how much our insurance was going to pay before we could start!! Once that got straightened out, we received the green light to proceed to the Chemo room.  It's a room in the back of the oncologist's office with six large leather (naugahyde) recliners.  One flat screen television mounted high on the wall, and one oncology nurse overlooking the whole group.  Paul's chemo treatment today lasted 5 hours.  Once that was finished we had to race downstairs for the radiation.  We were over 30 minutes late since the chemo took longer then anticipated.  Radiation hardly took anytime at all!!  We were in and out in less then 30 minutes.  

Now you would think with all this going on today, he would be a mess.  In all honesty, this is the best I have seen him in over a week!!  He actually was hungry when we left the medical center.  So we hopped on over to the Annapolis Mall (the medical center sits just behind the mall) and went to one of his favorite little eateries for some lo-mein noodles and chicken along with an order of carrots.  Yum he said!! (I say, to each his own).  

We now have our schedule for the radiation.  He will be going every day (mon-fri) at 8:10am.  This works out great for me since the store doesn't open until 10am.  I still will have someone lined up to open the store just in case we get in a backup.   

Since Paul is feeling better tonight, we both feel like this may be the lull before the storm.  We both are expecting nausea and vomiting and the works!!  Since Paul reacts to meds 99% of the time this way.  We are going to enjoy this evening for as long as it lasts.  He's actually NOT in pain tonight either.  So no pain meds. 

Suzanne, you mentioned a prayer chain.  Let's get that chain started!!  My mom told me today my godmother, Ruth has a sister in law, who is a nun and she has started a prayer chain as well.  Now in her case, I might have to call it a prayer train since it's suppose to be going around the world.  We may not go to church but we believe and we pray.  We welcome all the prayers. 

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Journal entry by Linda DeLuca

Today has not been a good day.  The nausea started at 6:30am this morning.  Went for radiation appt at 9:50am but had to take another nausea pill.  The radiation mask is giving Paul alot of anxiety.  He feels a tightness on his chest and throat when they lock him in it.  Although he is only in it for maybe 8 minutes he says it feels more like 30 minutes at times.  Doing lots of sleeping today.  Very little eating :-(  We will be talking to the Oncology nurse tomorrow morning after radiation.  He's been sipping on ginger ale (flattened) and it seems to help.  I think it's going to be a long night..... 

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Journal entry by Linda DeLuca

I know everyone is anxiously awaiting my posting.  The nausea just won't let up.  The vomiting started at 3 am and finally subsided at 7am.  Had to go out at 7am to find Maalox.  He sleeps in the bed for a few hours, then up because the nausea wakes him.  He then goes to the recliner in the living room, sleeps for a few hours and up again.  He didn't vomit again until almost 7pm this evening.  That was a short episode.  I remembered when we fly, Paul wears Sea Bands, used for motion sickness.  He suffers from vertigo and can not go on boats, has problems with planes or just being a passenger in a car.  The bands are worn on your wrist and they each have a pressure point "nub" that you position on your wrist.  I couldn't find ours so I went to the local drug store and bought the last ones!!  I am desperate here!! I will try anything that might work.  So far he has been in the recliner and slept.  He wakes every 45 min or so, mumbles and goes back to sleep.  For me that is wonderful.  Before he was like a yoyo between the bed and the recliner just waiting to vomit. 

We have a radiation appt at 8:10am and a follow up appt at the Oncologist at 9:45am tomorrow.   I just pray that the nausea subsides so he can start eating. 

I can not believe it's only day 3. It feels like day 30!!  It doesn't help either that Paul is stubborn, isn't known to take meds, so he questions everything he takes!  Has the outlook of, lets wait and see maybe it will clear up on its own....ughhhh.  That isn't going to happen. 

I just want to say to everyone posting in the guestbook, Thank you!!  You are all so inspirational.  He hasn't been able to read the last postings but I have mentioned them to him.  Along with the nausea, he also has blurred vision and a loss of hearing.  All of this is temporary.  It just adds insults to injury :-( 

Tomorrow is a new day.  I hope to bring better news to all.  Thank you for all of your support.  It helps us both tremendously.  Love you all......... 

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Journal entry by Linda DeLuca

A new day it is....

Slept in the recliner most of the night.  It was not a restfull night.  Since he missed radiation the day before he knew he couldn't miss two days in a row.  The anxiety was definately there.  He is also dealing with a thick mucous phlegm.  It's so thick that at times he feels like it's choking.  This has been a symptom since the original diagnoses of the sore throat not going away.  Now that radiation and chemo has started, it seems to have gotten worse.  My theory is the dead cancer cells are slushing and mixing with his saliva and turning into this thick mucus.  He buys it so go with it!! (HA).  I'm sorry if I offend anyone with that.

If you know Paul, he has a "different" sense of humor.  A sense of humor that has kept me smiling and/or laughing now for almost 16 years.  No one else has ever done that.  The beauty of it was that I "got it" the first time I met him.  Not everyone gets his sense of humor right away.  But when they do, it's like an addiction.  They get it, and they want to stick around and see what's next!!  I am sure his co-workers at the Children's Guild can attest to that!! 

Anyhow, the morning wasn't as much of a chore as I thought it would be.  Now remember last night I got him those Sea Bands.  Well, let me tell you, I can not say 100% certain that it was them working or if it just the placibo affect.  If it is, so be it!!  But my gosh, I think they are working or at least helping.  He wasn't nauseous as much but the best was he was alert. 

Went through radiation quite well.  I suggested he tell the tech to give him a seditive since he as been experiencing the anxiety feelings.  He said he would mention it but didn't want it.  He got through it.  That was a HUGE step today.  Again, the nausea was at bay during the radiation.  The tech's told him to keep those Sea Bands on!! 

Got upstairs to Chemo Oncologist office 45 minutes early.  We got so lucky, took Paul in 30 minutes early.  Oops, lost another 5lbs!!  And starting to be dehydrated.  Kept him for the next five hours.  Hooked him up to an IV.  Pumped two bags of fluids into him.  Now part of the reason Paul was dehydrated was that he wouldn't let me put anything into his feeding tube.  But the doctor explained the do's and don'ts today to both of us.  Now we both understand and will be "pumping in" more fluids even when the nausea is present since the feeding tube goes directly into the stomach and apparently doesn't effect the nausea.  (Go figure!) 

Now during his five hour stay with fluids dripping into his veins, he got "extras" added as well.  Extra strong nausea meds and extra sedatives.  Needless to say, he got home and all he wanted was to go to bed.  He was so tired of trying to sleep in a recliner.  I got home after closing up the store at 5pm, he had some flattened  ginger ale on his own.  Wanted to watch a couple episodes of Monk on TV.  Unfortunately, he just couldn't stay awake more then 10 minutes at a time.  He gave up and went to bed.  He wants to eat solid food so bad.  We will try to introduce this tomorrow, slowly.  It's encouraging that the fluids he took in on his own tonight he didn't vomit like before.  Tomorrow may be considered a "gourmet" day for Paul.  

There is no radiation on Sat & Sun.  My plan of attack is to "fatten" him up.  We will try different foods that interest him and hopefully will stay down.

All in all, it was a much better day.  Mentally, it helps him to know he doesn't have any appts to go to.  Let's see what tomorrow brings.........(stay tuned) 

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Journal entry by Linda DeLuca

Today was a good day.  Fed Paul Ensure in his feeding tube all day.  Didn't manage to put down as much as I had hoped but it's a start.  Still on nausea meds but no vomiting.  It was a pretty uneventful day.  He went outside a couple times for a few minutes each time to get fresh air.  Just so happy to not have any "appointments" to go to for two days!! 

For me it was a long day. So I will close tonight with a short update but a positive one.  He's in good spirits and he's actually watching a movie and a football game (gotta love that remote for jumping). 

Have a good evening y'all.  See you tomorrow........

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Journal entry by Linda DeLuca

The weekend is already coming to a close.  We had a ditto day to yesterday.  Did manage to put down almost two bottles of Ensure.  I am still hopeful we can do alittle more before 9pm.  The nausea is still prevalent.  He really has to fight it if I cook on the stove.  I had been making myself a dinner salad at night but decided to make something on the stove tonight.  Needless to say, it didn't go over well.  The smells are too strong. 

Tomorrow starts the radiation only week.  We will be going to radiation at 8:10am and then over to the lab for routine weekly bloodwork.   I will try to get Paul to start eating on his own again.  That will be my mission this week!! 

So I will close again this evening on the short side of uneventful.  I also want to let everyone know that the inspiration he has been getting from all of you helps tremendously.  Thank you....... 

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Journal entry by Linda DeLuca

Here I thought it was going to be an easy week.  Only radiation this week I said.  Got up at 6:50am to get ready for departure to AAMC for 8:10am appointment for radiation.  Then we just have to jump across the street the the Sajak Pavilion for the routine once a week blood work that will be mandatory for the next 6 months.  We get in and Paul is called to radiation immediately!!  WOW....this day is gonna be quick.  Then out of no where, the dietician shows up.  We were told we would be meeting with one but not sure when that would be.  She introduces herself and informs us she is there on Mondays and Thursdays.  I sit down with her since Paul is being called in for his radiation treatment.  His dismal intake of nutrition is a concern to her.  She asks if I have been told about Carnation Instant Breakfast VHC.  One can of this medical adult nutrition give you 560 calories, plus a whole bunch of vitamins..etc etc.  Then she adds to the pot, a product called Benecalorie.  It's a small 1.5oz cup of unflavored dense liquid that has 330 calories that I can add to these cans of Ensure or Carnation Instant VHC drinks!!  Now we're talking.  Add it up, if i could get a couple of those down Paul, 560 + 330, even when he gives me a
hard time he would get some calories!!  But it's only available for order online.  Will have to check that out when I get home this afternoon was my first thought!!

So, radiation is done, and the dietician is done.  We can to do lab work, right?  NOT....  We're told since this is our first complete week of treatment, Dr. Turano, the Radiation Oncologist, will be seeing us every Monday to go over Paul's treatment and condition.  So into a little exam room we go. Meet the nurse on duty.  Take blood pressure (this will also tell us if Paul is dehydrated) and his weight.  UGHHHHH.....down to 147lbs.  Dr Turano is concerned.  We have to get more nutrition in him.  I push the fact with the doctor that Paul is not the easiest to "feed".  We all agree that the feeding tube is there for a reason.  The dietician has given us info on "super" nutrition that must be administered at least 3-4 times a day.  Paul agrees with the doctor.

Lab work is quick and easy. This is the easy part of the day!!  Now back home we go.  We finally get home and it's now 11:30am!!  Since Mr. Stubborn won't let me feed him before we leave in the morning, this will be his first feeding.  I manage to feed him all but 50cc of the can of Carnation VHC 560 calories.  Much better then the Ensure at 350 calories.  I go to the store to make sure my help is managing alright.  Go back at 2:30pm for another feeding.  He gives me a bit of a hard time but I win, he gets another 250 calories.  Then again this evening at almost 8pm with 100 calories.  It's a start but he is still being so stubborn about it.  He agrees but then in the next breath he challenges me.  We will combat this and I will win. 

So it turned out to be a busy day after all!!  Tomorrow and Wednesday, the store is closed so I will be around all day.  We will get this routine down.  It is also obvious after meeting with Dr. Turano that he will not be eating on his own for a while.  But he must continue to take in liquids and swallow on his own.  This doesn't seem to be a problem right now.  This is very important. 

I got a late start on this and now I am tired.  I will finish up tomorrow.  Since I am off tomorrow I may be able to start alittle bit earlier!! So much to share....

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Journal entry by Linda DeLuca

It has been a good day so far.  As mentioned in last evenings journal about the higher calorie Carnation VHC and Benecalorie only available online.  I should have mentioned that as soon as I got home yesterday and fed Paul, I was online ordering a case of each!!  I should have them in a few days. 

Thank you Carole about the best price found at Walmart of $35.99 for the Benecalorie! That is huge since I paid $42.99 for a case on Amazon.  I will have to check them out for the next one I order.  Also, a huge THANK YOU to Sandra, my very very good friend who has already ordered a case for us and should arrive tomorrow!!  

As for today, it was radiation at 8:10am.  We were in and out within 30 minutes.  However, we had to run a couple errands on the way home and that totally exhausted him.  We have managed to get 840 calories in the feeding tube today.  I am hopeful we can get the last 280 calories in at the end of the night.  

Another one of the many many side effects is constipation.  The meds cause it, the chemo, the radiation and the lack of real food (especially solid foods).  So now we have to add milk of magnesia to the daily routine.  Once it passes we will be taking Senokot-S in pill form to help keep regular.  Last night started the cramping in the stomach for lack of being regular.  I managed to split the dose of milk of magnesia into the two feedings.  The nurse today said it should take about 8 hours to start working.  Well she was right!! It took 8.5 hrs!! He's starting to feel a little better already.  Now I know there's going to be room tonight for those last 280 calories....whoo hooo.    

Another side effect of the radiation is the loss of saliva.  This has already started to happen.  The thick mucousy phlegm he is experiencing is actually his saliva thickening.  We already have several remedies in place to help combat this.  One is called Caphosol, relatively new to the market, it is known as artificial saliva.  He swishes this in his mouth then swallows it 4-6 times a day.  In addition, there is Nystatin, an anti-fungal oral rinse.  Again because of the lack of saliva his mouth & tongue are developing a fungus in his mouth.  The dentist prescribed a "Magic Mouthwash".  It helps with pain in the mouth and numbs the throat and mouth for temporary relieve.  He also has to use Biotene, a mouthwash for dry mouth.  Let's not forget in addition to regular brushing with toothpaste he also has to use a flouride gel afterwards, called Prevident. 

Paul is also doing better today because he has only taken one nausea pill.  The nausea has subsided today.  He is much more alert and didn't sleep quite as much.  He was suppose to have a double dose of radiation tomorrow.  However, we have a big nor'easter heading our way. (It has now been downsized since this morning and appears to be blowing over and we will probably not get more then an inch or so).  The radiation techs informed us this morning they will be opening late therefore, our 8:10 am is canceled.  We still have to go at 2:30pm tomorrow for what would have been the second dose of radiation.  Instead the double dose is rescheduled for friday the 14th.  

Paul & I would like to give a huge thank you to the Children's Guild for the beautiful plant/flower arrangement that arrived today. Unfortunately, Freddie our mane coon cat thinks it for him so I have had to find a place very high in the house so he doesn't eat it!!  I think if I get a plant hanger I can hang it from a ceiling hook and we can admire it better.  

Today marked our first full week under our belt.  One down and five more to go.  Getting the routine down and reminding him and/or helping him with all the extras that have to be done every 2-3 hrs is the most demanding right now.  

I will close with high hopes that the snow storm will not make any drastic changes in its path and that tomorrow will continue as today, to be a good day. 

 

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Journal entry by Linda DeLuca

Paul's two month follow up appointment since November was this past Friday, January 25th. The check up went well. The swelling continues to go down. However, it hasn't gone down enough yet for him to be able to have a complete swallow. We need to give it another two months for the swelling to continue going down before any further decisions can be made on trimming down the flap. We'll be back in March for our next follow up.

There's also a dip in his jaw between where the "new jaw" meets the old. Without teeth, his lip caves in and is also making his speech a bit more difficult. He's reached a plateau with the speech therapist right now. In February we will see a Maxillofacial Prosthodontist. This will be a consultation to see if he can withstand an implant in this area. The prognosis will be reviewed in March with Dr. Dyalram during his follow up.

On February 15, he will have his six month check up with his ENT, Dr. Meeks. He scopes Paul and would be the first to know should the cancer show signs of returning. Dr. Meeks has also done these flap surgical procedures years ago. He and Paul talked over his surgery back in September. We're anxious to see what he says about Paul's recovery. 

Unless something unforeseen happens, I'll be back with an update after the March 25th appointment.  

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Paul’s Story

Site created on December 30, 2010

Welcome to Paul DeLuca's CaringBridge website. Paul & I have created it to keep our family and friends updated about Paul's progress. Get started by reading the introduction to our website, My Story.

Visit often to read the latest journal entries on his progress, visit the photo gallery (we will try to post a few photos), and write us a note, story, one liner or whatever the mood stricks in our guestbook.  We want all of you to stay connected with us as we go through this.  You can share your stories with us as well. 



What started out as a sore throat that wouldn't go away has been diagnosed as BOT (base of tongue) Cancer.  This type of cancer is very difficult to diagnose and usually is not discovered until stage 3 or stage 4.  Paul's cancer is in stage 4 (a).  There are 3 substages to stage 4, a,b,c.  His is (a).  

He is scheduled to start an aggressive dose of Radiation on Monday, January 3, 2011.  Radiation will be given 5 days a week, (mon-fri) for 6-8 weeks.  He will also start Chemo on Tuesday, January 4, 2011.  The Chemo will be given once every 2 to 3 weeks, depending on how well the tumor reacts to the treatment. 

It has become very difficult for Paul to chew and swallow.  Most of the food is soft and/or puree'd.  He has had to have a feeding tube put in just in case the treatment makes it impossible for him the swallow.  It is there as a precaution.    We hope he never has to use it!! 

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