Journal

Journal entry by Linda DeLuca

Paul had his Tuesday appointment with Jaclyn this afternoon.  She also gave him a miniscule amount of liquid to swallow and he still couldn't.  She is suddenly concerned that his problem may be esophageal.  She is planning a swallow study on Thursday after is noon appointment.  If it confirms some type of esophageal stricture she said he would be scheduled to have his esophagus dilated asap. 

Our insurance nightmare has begun.  Johns Hopkins Home Care has not been able to find us a company to transition the once a week nurse.  She comes to change Paul's Picc line dressing and check on his well being.  They also need to supply us with hydration supplies but that has yet to happen either.  Since JHHC could not get the transition completed this week they are sending our nurse over as a courtesy.  We will miss them so much!! 

This is only one of many other doctors and procedures that need to be switched over.  It is stressing me out.  The worse part is that we don't have the correct insurance book (one is suppose to be on its way in the mail since last thursday) for the plan we signed up for.  When I call the 800 number it all depends on who you get.  But no one has yet to give me any kind of detailed information about the flexible choice plan.  I will have to sit and check out the website and hope I can find information there!! I just don't have that kind of time....ughhh.

Anyhow, on a brighter note, my parents are on their way home to Florida from their stay in Vernor, Ontario this summer.  They will be arriving for a short visit this weekend.  We haven't been able to go down to florida to visit since Paul's illness so this will be a very welcomed stay!!  The weather is suppose to be beautiful.  This will make it even better :-)

 

 

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Journal entry by Linda DeLuca

Paul had a good week.  He had two meetings with Jaclyn, senior speech pathologist this week.  Already he seems to be improving with his swallows!!  She wants him to set a goal for when he will be swallowing.  He really wanted Thanksgiving but has settled on Christmas.  She says it's a pretty tall order but with hard work he maybe able to reach his goal. 

GBMC has been using a Therastim machine which is a neuromuscular stimulator. It sends electrical signals to his throat.  Jaclyn attaches the machine to Paul's throat during his swallowing exercises.  It also provides some resistance during his swallowing exercises, therefore, strengthening the muscles even more.  He will continue with this therapy twice a week for four weeks.  At the end of the four weeks she will order another swallow study to see how much he has improved. 

If Paul succeeds at reaching his goal for Christmas, we will be able to continue our tradition of having Chinese food on Christmas day!!  We started the tradition about 14 yrs or so ago.  It became a chore to cook such a big meal for just the two of us.  Paul had a jewish friend who was complaining to Paul about how nothing is open on Christmas day exept for Chinese restaurants and movie theaters!!  And that is what he did every year.  So we decided to join them!! Over the years we have gone from just the two of us to having as many as five other couples join us.  I still cook a smaller scale traditional meal but we just have it on Christmas Eve. 

Paul's cousin Carole had her surgery yesterday to have her lymph nodes removed.  Thankfully the pathology report came back non-cancerous!!  She may still need some radiation or chemo but will find out more some time next week. 

Paul's brother-in-law, Michael hasn't heard any results from his treatment last week.  We are all anxiously awaiting the news!! 

The fall weather is now upon us.  It will be dropping into the 40's at night and the high of the day will hover around 60.  I can't believe summer went so fast!!  Looking forward to a couple more Navy football games Sandra & Eric :-)     

 

  

 

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Journal entry by Linda DeLuca

Today was a muggy rainy day.  Paul went to work.  Champagne broke down on Monday and has been in the shop all week.  She's finally back and running!!  Unfortunately at a hefty cost :-(  But the ole gal gets alot of miles put on her so if you look at the cost per miles it's not so bad!!

It should be a very uneventful weekend for us since it is suppose to be raining and on the chilly side all weekend!!  Looking forward to some sunshine on Monday :-)  

Let's all snuggle with hot cocoa and good movies this weekend.  (Wishfull thinking on my part)  

 

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Journal entry by Linda DeLuca

Here we are a week later!!  A lot has been going on.  But before I share all of our news, I want to share news about Paul's cousin Carole.  She is a cancer survivor of 17 yrs.  Unfortunately, cancer is rearing it's ugly head at her again and in the form of breast cancer again!!  She is scheduled to have a partial mastectomy next Thursday, Sept 29th.  We won't know until 7-10 days after that when the labs come back if she will need chemo, radiation or any combination of treatments.  Her sisters Charlotte and Jeannie are there for her.  Let's add her to our prayers.  She's a strong woman and we're all there for you Carole. 

We also need to pray for Michael, (Paul's sister's husband) on his long journey with debilitating pain from a back injury.  Doctors are having a heck of a time pin pointing his pain and exact cause.  He was scheduled to have a myelogram procedure today.  It could take from 7-10 days before we know the results.  Hopefully this will finally give them some insight on how to treat his pain without morphine so he can go back to living a "normal" life!   

So now for our news.  It has been quite a week so far.  I was able to get Paul an appointment at GBMC (Greater Baltimore Medical Center), Milton J Dance Head & Neck Cancer Center for today, Sept 22nd.  But before we get into how that went I am going to back track to his speech therapy appointment with Megan on Tuesday and work up to today.  

Megan is the one that has been pushing us to schedule an appointment at GBMC.  We are pretty much at the end of the line with what she is able to do for Paul here at Anne Arundel Medical Center.  We also found out the whole department is changing hands and she will be leaving in a week.  We all agreed Paul needs some fresh ideas since he is still not swallowing.  

Paul's appointment with Dr Bhandari, (we see him every two months now) went well and as usual only lasts 10 minutes!! He is the one who gets the blood work results.  All of Paul's blood work is coming back in the normal or almost normal stage.  His white blood count, is at 37, with "normal" being at 40.  Remember when he was in the hospital with double pneumonia is count was at 4!!!  

His next appointment was with Dr Meek, (we see him once a month now) again shows no signs of the cancer coming back.  His throat is scoped and still shows some swelling.  This is still to be expected.  Dr Meek was notified about our appointment at GBMC and is very supportive & encouraging.  He told us about a clinical trial they are doing and that Paul might be a good candidate.  

So today was the appointment at GBMC. You can check out the facility at:  http://www.gbmc.org/body_headneck.cfm?id=200  It's 60 miles away.  We weren't sure how long it would take us and you have to consider traffic and/or accidents so the short of it, we got there an hour early!!  We were still taken right away, which was nice.  We met with Jaclyn Shellenberger, Senior Speech Pathologist.  We were told that Paul should have been given swallow exercises while he was having radiation.  Since he went four months with no speech or swallow exercises, this is one reason he is behind.  His muscles are still weak.  We told her unfortunately that had never been brought up to us by Dr Torano or Jackie, nurse navigator.  

We discussed the clinical trial.  Paul would definately be a candidate for it.  But if he participates in the trial, he can not work with Jaclyn, the speech pathologist.  We would have to be at the trials mercy for 17 weeks and just see if it works.  We opted for working with Jaclyn instead unless it comes back that the insurance doesn't cover it.  She is much more aggressive then Megan.  Has completely changed almost all of his exercises and is expecting results!!! She also wants to see him at least two times a week and possibly three if it can be worked out.  He will be going in twice next week.  

Another unfortunate dilemma is that Paul's employer is completely changing health insurance carrier.  We've had to opt for the more expensive plan that give us some flexibility so we can continue going to his doctors. We can't imagine starting with new oncologist at this point in the game!!   At least our primary care, and his two oncologist accept the plan.  We have lots to read.  Just waiting for our insurance cards so I can start making calls.  We need to try to transition his hydration supplies and his nurishment supplies without too many bumps!!  We don't think Johns Hopkins Home Care participates so that will be the first call. 

That's about it in a nutshell tonight.....

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Journal entry by Linda DeLuca

It has all slowed down here at the DeLuca's.  This is a good thing.  Paul has been going to work three days a week.  We seem to be on a little path of normalcy. 

I am working on making Paul an appointment with the Head & Neck Cancer Center at the Greater Baltimore Medical Center in Towson.  I should know more tomorrow.  They are in the process of verifying our insurance information. 

I want to wish my little brother, Mario a HAPPY 51st BIRTHDAY TODAY!! 

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Journal entry by Linda DeLuca

Paul had another swallow study this morning at 11am.  The results were discouraging.  The study shows that he continues to aspirate when he tries to swallow liquids.  It appears that his esophagus is either still quite swollen or it has thickened with fibrosis.  The study can not tell for sure.  The results will be going to Dr Meek for his recommendations. 

Because of the swelling or fibrosis it is making it almost impossible right now for him to swallow any amount of liquid.  The xray specialist (this is for a lack of not knowing her official title in this procedure!) conducting the study did make a recommendation to us.  She mentioned the Milton J Dance Head & Neck Cancer Center in Baltimore.  She said they only deal with Head & Neck cancers and might have some suggestions.  I will start making some calls tomorrow to see who we have to get a referal from to possibly get in for an appointment.  (Willem: any suggestions?) 

Paul's ability to return to work is helping him tremendously.  His strength and stamina is improving daily.  This is definately one good positive I hope continues.  He definately has a good support team in Chillum.  They've all been wonderful!!

We continue to weather the storms with no flooding at our home.  Our phone line & internet are back up but with static. 

 

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Journal entry by Linda DeLuca

Paul continues to gain, now up to 156 lbs.  He is scheduled for his next swallow study on Thursday, September 8th @ 11 am.  This will show us if he is still asperating when he swallows liquids. 

He also continues to go into work two or three days a week.  Dr Torano has released him to be able to work at least 4-6 hrs a day.   This continues to help him tremendously with his recovery!! 

 

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Journal entry by Linda DeLuca

Just want to give you all a quick update.  The storm was nothing like Isabel was.  We fared quite well.  We did have several very large tree limbs fall between our house and our neighbors fences on both side of us. 

We finally got our power back this morning at 7am.  We are going to give some serious consideration at getting a generator for future storms/power outages.  We were only out of power 2.5 days but it just got old fast this time around!! 

We've been very busy cutting up the tree limbs and branches.  We had to ask one of the neighbors to help us cut one of them since it was so large and Paul's chainsaw wouldn't start.  It is all cleaned up and we are slowly taking trips to the dump. 

Our phone line will not be up for a while.  The line was pulled out of the box on the house.  Verizon has never been the quickest to respond and since they just came off a strike I am sure they are behind!!  That means no internet at home either.  If anyone wants to reach us please do so on the cell at 410-507-2728. 

Just wanted to let everyone know we are doing well and we are safe. 

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Journal entry by Linda DeLuca

I am going to give a little update in case we do lose power this afternoon/evening.  Paul & I have decided to stay put at our house and ride out the storm.  Hurricane Irene is not directly coming up the Bay like Isabel did in 2003 and the winds will be from the East not the South.   

Everyone stay safe and stay dry!!

Hugs.....

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Journal entry by Linda DeLuca

It looks like we will be hunkering down in anticipation of Hurricane Irene's arrival this Saturday afternoon.  Now depending on which station you listen to and what time of the day you listen to it, the forecast is still changing by the hour.  Unfortunately, it continues to change for the worse.  There are predictions that this storm may be stronger then Hurricane Isabel back in September 2003.  We will make are decision tomorrow on whether we will stay or leave. 

We did get our stock of bottled water yesterday.  We also checked all of our battery operated lanterns and put fresh batteries in our radio.  We learned the hard way with Isabel to not wait to the last minute!! 

Oh this is Paul's website, I should be talking about him....da!  He is doing better everyday.  He has gone back to work on a very limited part time statis right now.  Since he is managing it quite well, we will be seeing his doctor again to see if he will extend his letter to allow Paul to work more then two hours a day, three days a week. 

Paul's visit on Tuesday with Megan went well.  His range of motion is getting better with his neck.  He is now weighing in at 155 lbs.  If you didn't know what he's been through, he actually looks pretty normal at first glance.  The only giveaway is his Picc line in his arm and his G-tube pertruding alittle from under his shirt. 

His next swallow study will be scheduled within the next two weeks.  This will tell us if he is still asperating when he tries to swallow.  If not, he will be able to start attempting to swallow small quantities of liquids. 

He is really making great strides with his energy.  He is able to cut the grass without my help.  He does it in sections and takes a couple days.  He doesn't need all the naps he use to take.  He voice is getting much stronger and less raspy.  It is much easier to understand. 

Paul's visit with Dr Meek, ENT, on Wednesday also went well.  Dr Meek is really impressed with Paul's voice, weight and overall well being.  This visit showed that the swelling in his throat continues to go down.  Also there is no sign of the tumor anymore!!   

For those of you wondering about our 5.8 earthquake on Tuesday, we managed to fare quite well.  Both at our house and at my store, we only had a handful of items fall but nothing broke.  I was not even home at the time.  I was out with a friend heading to Hanover, VA., only 34 miles from the epicenter!!  Since we were driving at the time it hit, we felt nothing!! 

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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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