Journal

Journal entry by Linda DeLuca

Paul had his appointment with Dr Bhandari today.  It was to decide when to start the chemo treatment. Also which treatment he wanted to try.  We have opted to try the three weeks on/one week off.  He will have one small dose of chemo a week (it will take about 1.5hrs). This treatment will continue for at least 3-4 months.  He will be tested after that time.  His condition will be re-evaluated and decided if he has to continue with more chemo at that time. 

Otherwise the other option is for Paul to have a mega dose of chemo once every three weeks.  That is what he went through with the first treatment.  It made him so sick.  We are hoping these smaller doses will keep him more normal.

The treatment will start on January 12, 2012 @ 10am.  He will go back to having bloodwork done everyweek as well.  

I have to call Dr Cattaneo to set up an appointment for Paul to have a "port" put in.  The port will replace the Picc line and is suppose to be safer.  It will be placed in the front of his left shoulder/chest.  Unfortunately, he will have to be put under anesthesia again but it is done as an out patient.  Therefore, the dose should be minimal.  He's always done better with those.

He continues to drink small doses (1-2 ounces) of water or grape juice everyday.  His swallowing is getting much better.  I think it is building up his confidence.

He was also fitted for a better jaw stretching/muscle exercise machine.  It's called a Dyna Splint.  Another piece of equipment we need to add to our daily routine!!

We will be having a quiet Christmas at home.  Only my sister is coming over.  The weather forecast is mild for this time of year so we will enjoy a calm day watching the swans & ducks frolicking in the Bay!!

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Journal entry by Linda DeLuca

Today was Paul's post op appointment with Dr Cattaneo.  Had to go get a chest x-ray first on our way there.  Visit went well.  Incision sight has healed up very nicely.  The x-ray did not show anything new.  Paul's lungs sound good. 

Next appointment is tomorrow with Dr Bhandari to find out about the chemo treatment/schedule.  

Paul is bouncing back a little slower from this surgery.  He has suddenly gotten another bout of constipation.  I was joking with him today saying that he must have a team of beavers in there building quite a damn this time!!   Didn't go over well. 

He is also slowly starting to put on alittle bit of weight back.

We would like to say a very HAPPY BIRTHDAY to my 'Lil Sis, PauleAnne!!

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Journal entry by Linda DeLuca

It's been a very busy six weeks so far.  Unfortunately, not all good news.  For some of you, I have already called you with what is going on.  I will try to get everyone up to date this evening. 

On another note, there have been many administrative changes at Paul's place of employment.  Therefore, we have decided it would be best to keep this private among family and friends.  The added website password was the quickest way without starting a new site.

Paul had his six month Petscan on November 10th.  He was scheduled to see Dr Torano on November 15th to find out the results.  The appointment turned out to be two fold.  One that Paul's head and neck cancer was still gone and cancer free.  But they had been watching a "spot" on his right lung since May. It was now showing up on the Petscan as cancer  with another spot not too far from it.  We decided since surgery was an option to have these two spots removed immediately.  The surgery was performed on Dec 1st.  It all went well.  Paul came home on Dec 3rd. 

We met with Dr Bhandari this week and he confirmed that Paul's head and neck cancer has metastasized to his lungs.  We have an appointment on Dec 21st with Dr Bhandari.  At that time he will tell us the details of our next plan of attack.  

He is taking alittle longer to recuperate.  His long time nemesis, "the phlegm" still continues to plague him.  At times it is so thick the suction machine he has gets clogged up from it!! 

Needless to say, the swallowing is getting neglected right now.  He is suppose to see Jaclyn on Tuesday (she has been on vacation so he hasn't seen her in two weeks!) and she is great at getting him motivated.  Let's pray that happens. 

Unfortunately, this journey is far from over.  Please keep Paul in your prayers. 

 

 

 

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Journal entry by Linda DeLuca

Happy Thanksgiving to all!!  We had a very nice quiet day at home with my sister, PauleAnne, my son, Gary and our friend Jayne. 

The turkey was provided and cooked by our friends Sandra & Eric.  She cooked it Wed and brought it over Wed night.  It was absolutley delicious!! It was also huge, so plenty of leftovers for our guests :-)

Jayne brought a green bean casserole & a corn casserole, a raspberry pie, and cheesecake cupcakes of sorts!!  All's I can say is, YUM!! :-)

Have a wonderful day and weekend...Hugs & kisses

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Journal entry by Linda DeLuca

Unbelievable...it's been two weeks since I posted!!  I have been so busy with the shop getting ready with the holiday merchandise and Paul's follow up appointments.

Paul had a follow up appt with Dr Blanco on Friday, November 4th.  The possibilities of his esophagus being punctured were eliminated.  He was scoped in the office and his throat looked good.  It was still quite swollen and sore but he was finally able to start swallowing thicken liquids. 

Later that morning we met with Jaclyn and she had Paul swallowing some applesauce and thicken juice. 

Last week Paul had two more appts with Jaclyn and continues to make very small but positive strides with his swallowing.  He is scheduled to have the botox injections in his larynx muscles on Dec 1st.  This will help to loosen the muscle and help him with his ability to swallow better. 

Thanksgiving will be spent quietly at home.  Our friend Jayne is coming over.  We maybe joined with my sister, PauleAnne and my son, Gary as well. 

It's a little difficult to write since November and December are my two busiest months.  But I will try to keep up a little sooner then two weeks!! 

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Journal entry by Linda DeLuca

Hello folks!! The surgery went well.  The opening of his esophagus was blocked with a thick webbing with only a hole the size of a pin.  Since the blockage was found to start at the opening and not down his esophagus, Dr Blanco immediately thought his stricture was blocked all the way down.  So he removed his G-tube and went up his esophagus through his belly.  Only to realize when he got to where the blockage was originally assumed to be, it was clear!!  Paul had the best case scenario, only a thick web like blockage at the base.  He opened his esophagus the size of his index finger.  He replaced his G-tube with a new one.

Since Paul had to have a breathing tube his throat will be very sore for a few days.  Also since they went through his belly, they had to pump air in first to clear a path so his belly is very sore too. 

He will have some swelling and bleeding in his throat, this is to be expected for a day or two.  He wants us to be very aggressive with his attempts to swallow.  First trying with water, then maybe some thick liquids.  We also have to keep a journal of what he tries and if it goes down.  The only thing we have to be careful is that he does not aspirate.  If he does we have to hold off.  He will be scheduled for another barium swallow study on Friday or Monday. I am waiting for the hospital to call me on which day they were able to get us in.

The other thing we have to watch is the possibility that the doctor punctured his esophagus.  We have to watch for extreme nausea, rash around his neck and a fever.  If this developes we have to go to the emergency room immediately!!

The surgery lasted two hours.  He was in recovery by 11:30 am but complaining so much of nausea and pain, I asked the nurse if she could give him meds to make the trip home a little more tolerable!! That held us back for almost three more hours since he had to have fluids with the meds.  But I didn't mind since I would of had to hook him up to hydration when we got home anyways.  He got them there instead...oh well!

He is resting now. He is very tired and since he is full of gas, it's literally tooting out of both ends :-).    (I couldn't resist a little humor)

Now it is very possible he will have to have this procedure done once more in three or four weeks. But we have to wait and see.  Also his larynx muscle which is situated near the opening of his esophagus is extremely tight.  This could hinder his swallowing some. If it does he will have to have botox injections in that muscle in three weeks to loosen it up.  But I was told its a simple procedure and will benefit him.

On another note, Barbara & Michael are snowed in in New Hampshire with no electric since Sat!!

Carole's chemo will start on Wed, Nov 9th.

Jayne is finally home from the hospital (the hospital that nearly killed her!!) and slowly regaining her strength.  I've brought her a couple yummy dishes to make sure she gets her strength back. (Hey she helps me alot at the shop and has done so much for me, so yeah I guess I have an ulterior motive.  She's a great friend to have!)

I think that's all for now.  Feel free to call me if you want.  Later it's going to be a quiet put my feet up, read the paper with a couple gin & tonics and off to bed night ;-)

 

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Journal entry by Linda DeLuca

Paul's appointment with Dr Blanco went well.  Paul will have his surgery on Tuesday, Nov 1st @ 7:30 am.  However, we have to be at GBMC at 5:30 am.  I am not looking forward to getting up at 3:30 am since it's an hour and a half away!! 

Dr Blanco went over all the possible scenario's with us.  The procedure should be out patient.  He won't know how thick or how long the stricture is until he gets down his throat.  If it is too thick he may have to go up through his G-tube in his belly.  Then there are the possibilities of puncturing the esophagus during the procedure and all the complications associated with that.  We will cross that bridge if that happens!!

Then we had to get him to our primary care doctor for his pre-op tests, blood work & EKG.  The results have to be at the hospital 72 hrs prior.  Thank goodness we have a doctor that was able to get Paul in yesterday.  They called today and the reports are on their way to the hospital. If this didn't happen like it did, the surgery would have been moved to Nov 11th, the next available date.

We don't get out much since it makes it difficult for Paul to relax and enjoy himself.  He is very uncomfortable around people not being able to take in anything by mouth.  But our friends Sandra and Eric invited us to another Navy football game on Saturday afternoon.  Even though he didn't want to go initially, he ended up having a good time.  They are good friends and make him feel comfortable. 

Thank you Barbara for the update.  I could not go through what you are doing with all the extra people in your home.  I commend you and Mike for your patience!!

Betsy, thank you so much for sharing what is going on.  Now we understand.  Can you email me (Ldeluca1959@yahoo.com) about the chinese herbs.  Also about the alkeline info. Do you think it might help Paul?

Bonnie, so happy to hear it is not cancer.  But sounds like you may still have to have surgery?  Call me when you are coming, I have been at the warehouse painting up a storm.

As for Jayne, she came home from the hospital on Saturday afternoon, only to go back on Sunday morning at 3 am.  She is on an insulin pump and the hospital had apparently disconnected it.  She passed out and her son got her back to the hospital.  She is just coming around today.  She is slowly recovering but they want to send her home tomorrow!! 

Carole and Charlotte are home resting and getting ready for the chemo/radiation battle ahead.

 

 

 

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Journal entry by Linda DeLuca

So much is going on right now.  It's been difficult keeping up with the journal.  When the insurance changed October 1, we have had to go through many hoops.  So far the only doctor we are loosing is Dr Meek, ENT.  We have been refered to Dr Blanco at GBMC and will be meeting with him tomorrow for a consultation.  He will be performing Paul's dilation on his esophagus.   We will get all the details tomorrow. 

Carole is awaiting the next step for her cancer.  Since the cancer is so aggressive she will have to go through chemo and radiation.  We will find out next week what the schedule will be.

My friend Jayne went to the hospital three days ago for kidney stones and was admitted.  Apparently she also has a kidney infection.  She is not doing well.  Her son flew in from Arizona to help her. 

My friend Bonnie has also found some disturbing news about her thyroid that might be cancerous.  We are awaiting test results on that. 

Paul & I would also like to reach out to Betsy.  She is fighting cancer herself and deciding not to go with treatment.  We do not know the details of her decision at this time but would like to extend our prayers.  There are so many options these days.  Please consider them all.  You are with us every day. 

Barbara we are holding our breathes to hear about Michael's results from his tests. 

I am so busy right now with the shop and getting ready for the Holidays.  There just isn't enough time in a day to get it all done. 

Let's keep everyone in our prayers right now.   Thank you to everyone with your patience.  I will try to keep you all updated.  

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Journal entry by Linda DeLuca

Why does time seem to be fleeing by so fast these days!! I just realized that it's been over a week since I last posted here.  So Sorry.....

The new insurance is still a hassle but it's getting worked out a little at a time.  Paul's appointment last Thursday with Jaclyn got canceled because the insurance did not give GBMC approval in time.  They also canceled his barium swallow study last Thursday for the same reason.  On Monday we got word that Kaiser approved 6 visits for Paul with Jaclyn so his appointment on Tuesday was a go.  We had also rescheduled his barium swallow study for today and that happened as well.

The swallow study was short and to the point!!  This time it confirmed that Paul's esophagus is definately blocked.  It is barely open and allows a little bit of liquid to go down but then it has a total blockage.  It then comes back up and this is when he either aspirates it or spits it out.

Jaclyn has already called Dr Meek, ENT for his recommendations.  We have to wait until Monday to find out his decision since he is on vacation this week.  Unfortunately, he is also going to have to recommend another ENT as well since Dr Meek does not accept Kaiser insurance :-( .

There are about four different ways Paul's esophagus can be dilated.  The procedures I believe can all be performed, "out patient" so he shouldn't miss work.  We will find out the details of all this next week. 

Once this was determined today, Jaclyn has also canceled his appointments for speech/swallow until the procedure is completed.  He must continue to work on his exercises at home for now. 

Paul is actually excited and positive about the news.  He feels like he will be able to move forward with all this soon.  He so desperately wants to get rid of the Picc line. 

The visit with my parents was very nice.  They brought me some goodies that can only be found in Canada.  It is such a treat!!   They are now back home in Davenport, FL for the winter. 

I would like to share the update about Carole and her fight with this new breast cancer.  The pathology report indicated not all the cancer was removed.  It is in Stage 2 and very aggressive.  Today additional surgery was being performed to remove more cancerous tissue.  We will find out more in a day or so and will bring it up to date. 

 

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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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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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