S.A.S.H.

Saline - Administration of Medication - Saline - Heparin. That's what SASH stands for. Sounds simple right?  A few steps are left out.

Sterilize the cap, attach saline syringe to port tube, unclamp port tube, push saline from syringe into port tube, clamp port tube, remove saline syringe, sterilize infusion cap, attach to port tube, unclamp port tube, unclamp antibiotic infusion tube, wait 15 minutes, clamp infusion tube, clamp port tube, detach infusion tube, sterilize cap,  attach saline syringe to port tube, unclamp port tube, push saline from syringe into port tube, clamp port tube, remove saline syringe, sterilize the cap, attach Heparin syringe to port tube, push Heparin from syringe into port tube, clamp port tube, remove Heparin syringe, dispose of all the plastic wrappers, syringes and antibiotic pump.  Not exactly sure what that abbreviation is but I'm sure it isn't S.A.S.H.

Only 10 more days of it!

Thanks for all the well wishes and prayers.  We felt the love!!

HE'S HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

At 1:12pm today I got Joe home from Duke Hospital!!!

WHEW!!!!!!

Hopefully Our Last Night at Club Duke

The nurses have been watching the progress of the blood cultures from the lab all day and thus far there has been no bacteria growth. Just a few more hours and we will have hit the 48 hour mark. If we make it past the 48 hours with negative results, Joe Comes Home!!!---of course as I type this they just came in for vitals and his temp is slightly elevated - 99.2 - Normal folk consider that a slight fever however here it isn't. Jasmine however raised an eyebrow and told Joe that she will monitor the temp tonight. Prepare to be awakened during the night.

Speaking of sleep, this is why I don't like napping when Joe is awake. He always takes the most unflattering photos of me. I was trying to read some this afternoon when my usual Sunday afternoon drowsiness overcame me. Then out comes Joe's camera.

Ok, so besides my 2 chins and glasses on top of my head, not all that bad.  But his day will come.

Hopefully this is our last night at "Club Duke" although we could not have had better care and better people looking after Joe.  Everyone from the doctors, nurses, nurses assistants, food service personnel and everyone else we have encountered has been so caring and pleasant.  Thank you Duke!

Sunday Morning Walk

It's Sunday! That means a trip home for me to clean up, take Joes duty clothes, get clean clothes, feed Dolly, clean out her litter box and empty the trash. All in an hour. Then I returned, stopped downstairs for my Starbucks coffee and then up to 9th floor to Joe's room. Leah the nurse taped up his port area and he took his shower and then we went on our morning walk. This time back over the concourse past the Cancer Center to the Duke Clinic and over to the clinic parking deck. Taking that route is much nicer than just walking in circles around the floor. Of course I had to take photos.

The top left photo shows the Duke Cancer Center to the left (where the tallest part of the building is), another shot of the Duke Chapel spires from the concourse top right; bottom left, the Life Flight helicopters have been busy this morning; bottom right, the rendering of the existing hospital in tan and the new additions in white.  All totaled its a huge project.

I've been down to the Atrium Cafe and gotten my lunch and we are just waiting for Joe's to be delivered.  I'm not willing to wait too long before starting or else mine will be cold.  There are many things I will do for Joe, but waiting to eat and having cold fries is not one of them.

We missed being at church this morning and are so grateful to Jill Boliek for filling in for Joe.  He's really looking forward to choir practice Wednesday.  We are just hoping and praying the lab results in the morning are negative so that he gets out of here.

Ok, I've waited long enough.  My lunch is calling and Joe has been on the phone for the last 30 minutes so he probably won't even notice.

Have a great day.

A Long Day of Nothing Except 15 minutes of Treatment

That's what today was.  Not much of anything happening (not that either of us is complaining mind you) except his 15 minutes of treatment on the antibiotic.  Seems a shame to be here all day watching mindless television for just 15 minutes.  But we do know it's necessary.  We did get the results of the second batch of labs that were done upon our return to the hospital on Thursday and they did not have any bacteria growth.  Negative.  That is a very good thing.  However, since Joe had a fever that spiked at 102.6 last night and had another round of labs done, we will most assuredly be waiting another 48 hours for those results to come back.  What that means is that it will most likely be Monday before he can go home, assuming those labs come back negative and he doesn't have any more relapses.  

Today we took 3 walks.  One before lunch, one after lunch and one after dinner.  The one before lunch was over the new concourse that connects the hospital to the Duke Cancer Center.  Between those two points is where all the current construction is going on.  Above you can see the progress on the new Learning Center for medical students as well as the architectural/artist rendering of the finished project.  My photos don't do it justice.  I'm sure the current and future med students here at Duke are anticipating the opening.  Definitely state of the art.

The second walk was intended to be down to the first floor to look around.  Instead, as soon as we got to the first floor lobby, Joe headed straight over to the baby grande piano and sat down to play.  There were a couple of books containing popular hymns so he just turned to the first familiar one and started playing.  It was only moments before some of the people roaming the lobby, mostly patients, came over and sat down to listen to him.  On his third hymn a gentleman approached and asked if he could sing along with him.  Joe of course said sure, what do you want to sing.  Someone sitting there listening, requested "Amazing Grace" so that's what they did.  Soon after came "Rock of Ages" and the finale was "Softly and Tenderly Jesus is Calling".  The gentleman, an Irish tenor, was not familiar with that song, so I had to help just a little by first singing the melody (softly) while Joe ran through it one time.  Then the gentleman sang loud and clear when he was ready.  By the time he was at the chorus, I couldn't help but sing along and offer a little harmony.  By then, what was supposed to be our walk, had turned into more of a concert so we excused ourselves and made our way out to the garden courtyard.  The photos below are of Joe at the piano, obviously, as well as the gentleman who sang and a shot of Joe smiling while we were in the courtyard.

Our last excursion of the day was also over the concourse to the DCC. The photos above are of the back side of the DCC, the new hospital wing which is HUGE, and the spires of Duke Chapel in the distance past the construction. You can even make out the Chapel spires over Joe's shoulder.

So today was a 15 minute treatment, 2 walks, 1 piano playing and mindless TV. But once again, I'm not complaining. After the day yesterday, I'll take a little boredom. It was a good day, although we did have to say goodbye to Dr. Mowery. She will be doing a 30 day rotation over at the VA Hospital across the street starting Monday, so we won't be seeing her again. She is such a kind and caring person. We will miss her. Don't get us wrong, we like Dr. Fager and Dr. Peppercorn as well, but she is so easy to talk to and even laughs at Joe's quirky sense of humor. Thanks Yvonne.

So now I will close. No pity party tonight. Susan, Jasmine & Lucie are taking care of Joe (and me) and we are all tucked in for the night. I can already hear Joe's little snores which make me smile.

Maybe tomorrow will be a little more exciting, but in a good way!

Thanks for the caring, prayers and sentiments of concern. Our readers are the best! Bless you.

Self Pity Time

For anyone looking for news about Joe, this post will have very little information.  This is self pity time.  11pm: Friday night August 24, 2012 Duke University Hospital.  4th night at the hospital.

Joe started having chills again a little after 9pm.  They took his temp and it was 98.6.   His chills got steadily worse (I even climbed into bed with him to try and warm him up - and it is hot in this room already).  At 10:10pm, I had the nurse to come back in and take his temp.   It was 102.6  so that's 4 degrees in an hour.  They gave him 2 tylenol and the doctor ordered more blood to be drawn for cultures.  They've drawn it from the port and we are waiting for someone from the lab to come draw from his arm.  Guess we are guaranteed another 48 hours in here.  He's drifting off to sleep now that the chills have stopped but will be awakened shortly when they arrive to draw blood.

But that's about it.  We had a good evening. He ate all his dinner, fish - YECK!!!!!, and then afterward we went for a walk around the 9th floor.  He wanted to go down to the 3rd and walk over to the clinic side, but I said no since it was so close to time for the 7pm shift change.  Getting on an elevator between 6:30-7pm is a lesson in patience.  We are on the top floor and I've had the joy of stopping at every floor to let people get off and on.  No fun!  So we just circled the floor 6 or 7 times so he could get some exercise to assist with preventing blood clots from all the laying around he's been doing.  He had 2 visitors.  He laughed and enjoyed them.  Then the chills.

While down in the cafe earlier I ran into the chaplain and had a nice talk.  I think she said her name was Janine.  We had passed each other a couple of times while Joe and I were walking.  I guess she has a 6th sense and just stopped me and asked how I was while looking for a snack.  I rambled on for a minute or so about not sure what to get for me and Joe to snack on and then she asked how was my loved one.  I think that is when the tears started to trickle a little out of one eye.   I know she had seen us together on the cancer floor.  Was there a look on my face?  Why did she stop me out of the blue to inquire how I was and how he was?  We talked for 10 minutes or so right there in front of the deli sandwiches, she suggested the chocolate chip cookies by the check-out and then I just babbled about Joe, about our anniversary being last weekend, about how much we love PGUMC and on and on and on.  I'm not sure what all I said or why I just opened up to a complete stranger in the Atrium Cafe in the deli section.   But those few minutes were great.  I'm sure I made no sense whatsoever and I'm also sure I went on much longer than she had expected.  But then we parted our ways after I told her Joe's room number, I checked out, came upstairs and ate my danish.  Of course by then, Joe was starting the chills mentioned above so I put those moments I felt downstairs in the back of my mind and I hugged Joe until his shivers stopped.  I had my self-pity time and then it was time to focus on Joe again.

Helplessness.  I watch the nurses draw what seems like an extreme amount of blood from his port.  I wait for the lab person to come and draw an equal amount from his arm.  I wait and I watch.  I laugh when he makes a silly comment to the nurses that they completely don't get.  I scold him for his sarcasm that they don't understand either.  Smart nurses, pleasant nurses, but not fun nurses.  Where is Becke from this afternoon.  She gets Joe.  She talked with him for long periods and made him laugh.  Where's Heather, who has a twin that works on the same floor.  She's quiet but has a wonderful smile and laughs at his jokes.  Where's Donna from last year who came by to see us yesterday when we were re-admitted because she remembered us and says she thinks of both of us very often.  In essence, she waits too.  Waits for us to come back to the 9th floor.  And we don't disappoint.  Here we are folks!  Self Pity.  I wallow in it.  I feel like tonight I'm wearing it as a badge of honor.  Poor Joe, Poor Jeff.

It's dark in here except for the light from the ipad and the 4 lights on the side of Joe's bed.  He's sleeping quietly.  But they will come and wake him up.  Stick needles in his arm and wake him up.  Poor Joe.  I'll watch.  Poor Jeff.  The room is suffocatingly hot.  Joe is cold and under 2 blankets and a sheet.  I sit here with beads of perspiration on the back of my neck.  Self Pity.

My health is good.  Yay me.  Joe's health is bad.  Poor Joe.  Joe sleeps in a bed.  Good for Joe.  I sleep in a chair.  Poor me.

Lay it on thicker Jeff.  Feel sorry for yourself just a little more.  Maybe someone will stop the hurting and stop the pain.  Maybe Joe will feel good tomorrow.  And the day after that and so on.  Wouldn't that be nice.  But then who would feel bad for me.  I guess I still can since it's Self Pity Time.

Heart Ultrasound Results Are In - He Has a Heart!

It looks like it will be Sunday pm at the earliest before Joe leaves Duke hospital.  They did an ultrasound of his heart to see if any of the bacteria was present in the heart valves this morning.  The results were negative...whew!  They have identified the type of bacteria and changed his antibiotic to one more specific to this type of bacteria.  Only gets it once a day.  The particular strain of bacteria is streptococcus viridans.  Not an uncommon oral strep.

Cultures from the blood taken yesterday won't be ready until tomorrow evening.  This time they are waiting the full 48 hours.  The results will determine what happens next.  If the newest batch of cultures are negative, then we are good and Sunday might be release day.  If the cultures are positive, then they will do another check of his heart but this time with a scope down his esophagus and into the heart (OUCH!).  He will be knocked out for this if they have to do it.  

He feels good, looks good and has energy.  Only real problem is that the antibiotics will keep him from having his chemo treatments, which is not a good thing.  Not sure right now when they can resume.  Probably at least a couple of weeks.  This Monday's treatment has already been cancelled.

His new antibiotic is ceftriaxone.  It's a short 15 minute infusion once a day.  The rest of the time, we just sit here or go for walks.

As you can see, he still maintains that infectious smile.  Time for us to go get some exercise by walking around.

Many, many thanks for all the prayers and good wishes.  We are truly blessed by having so many people who care so deeply around us.  Also. A BIG thank you to our nurses and doctors:  Becke, Brittany, Britany, Lucie, Heather, Samantha, Courtney, Grace, Susan, Jasmine, Leah, John, Dr. Mowery, Dr. Fager, and Dr. Peppercorn.  They have all been great.  Even our very own Leigh Howard came over from the clinic to see us today and to not make me cry.

We Love All Of You!

Bacteria Identified!

Well we have made a little progress towards a final diagnosis of the infection that is causing Joe's issues.  It's streptococcus.  How do they treat, extreme antibiotics.   They will be looking today carefully at Joe's port to see if that is the source and also will be doing an ultrasound of his heart to make sure there is no growth in/on any of his heart valves.  Apparently that is one of the favorite places for the strept to hide and attach itself.  Given its the heart, if there is some there, it can commonly break off pieces of the bacteria thus sending the bacteria once again flowing through his veins.  We certainly don't want that.  If there is some attached to the heart it would mean around 6 weeks of IV antibiotics.  However we would get to take him home for that. (more home health care I presume, or I will get a lesson on IV's - to go along with my current skill of wound vac pumps, chemo ball infusions, surgical dressing changes, and hernia binder placement).

So with that said,I'm going to venture over to my office, cringe at the backed up work if there is any, catch up some and come back ASAP.   I also need to go find out where Joe's breakfast is.   After 9am and no tray.

Thanks for all the words of encouragement, prayers and concern.  We love you!  Keep the prayers coming.

Some May Say It Was A Cruel Joke

Joe was discharged at 10:30am today and we went by the pharmacy and dropped off his prescriptions. We had one quick errand and then returned to the pharmacy to pick up his antibiotics and headed the 1 mile home. Upon our arrival, Joe got a call from Dr. Mowery that the last of the blood culture results had just come in and that it was positive for bacteria. So now we are back at Duke and Joe has been readmitted. Soon the IV will be back up running and more antibiotics as they try to determine the source and type of bacteria. Joe was able to get a shower at home and see Dolly, so at least that was positive.

We feel like prison inmates who were let out on work release for an hour and a half. But if there is bacteria swimming around in Joe's blood, we want the source found and eradicated ASAP!

Joe feels good, looks good and is ok with us retuning since it is necessary. The big guns of antibiotics will be going soon. We even got to see one of our favorite nurses from our first visit here back in 2010, Donna.

Guess it will be a surprise for our nurse Grace when she comes in at 7pm that we are here!

Here Becke and Brittany are hard at work getting 2 blood samples to do new cultures.

Thursday morning at Duke

Joe's temp this morning is back down to 98.3 after it went back up to 100.3 last night around 11pm. Before the doctor left last night (Dr. Yvonne Mowery) she said she had started his discharge papers so hopefully this mornings normal temperature will override last nights temperature spike.

Joe slept well last night. Turning in around 10pm and drifting off quickly after 2 nurse interruptions between 10 and 11pm. After that, the only interruption was at midnight when they came back in to hang a new bag of antibiotics. Sometime following that trip, I drifted off to sleep myself. At some point during the night, apparently his IV pump had come unplugged and the battery wore down so it went to beeping. It seemed like it beeped for 30 minutes but I'm sure it was no more than 1 minute before they came in and plugged it back in. It was probably my recliner that was at fault since the foot rest portion was the closest to the IV stand. Oops! A couple hours after that the antibiotics finished and of course the beeping started again. After that was hushed I just sat my chair up some and just dozed off and on until 6am when it started getting light outside. At that point the chair came completely upright. Joe woke up around 7:15 when the nurses changed shifts. Grace left us and Becke & Brittany are the nurses until 7pm tonight. Joe is now devouring his breakfast, I have had a small coffee and we wait for news. Keep your fingers crossed for us.

Ultrasound Results

Dr. Yvonne was just in with the ultrasound results. (Leigh, if you are reading this, she really speaks highly of you) No blockage and no signs of infection around stint. They are going to keep him one more day to observe and keep antibiotics running. If fever stays down will send him home in the morning. YAY! No ERCP procedure. This is very good news even though they haven't pinpointed the cause of the fever (which would be great - but beggars can't be choosers). Now he is waiting for his lunch. I have just let out a big sigh of relief!

Just before the doctor came in Joe was sleeping and must have been having a nice dream judging by the smile on his face.

7pm Update: around 3pm this afternoon, Joe began to complain of chills and feeling warm. Sure enough, his fever had returned. 100.3
He was given Tylenol and his fluids resumed as well as antibiotics, magnesium and potassium supplements. As of 6pm his fever had not gone back down. We shall have to see what the doctors think later tonight and in the morning if the fever remains. Hoping it breaks and we are still able to get Joe home in the morning.

Morning after the Emergency Department

Joe slept pretty good last night up here at Duke Hospital. Seemed to be fewer interruptions than normal but I think I just passed out around 2am. I've been up since 6 when they added the latest fluids. They just did vitals and temp is down, BP normal and oxygen level normal. He's had a few doses of antibiotics now. He is scheduled for an ultrasound of abdomen at some point this morning but don't have a specific time. Nurse change has just occurred so Grace has handed off the duties to Heather.

Joe is now watching his usual Good Morning America and just waiting for word on the ultrasound. He can't have any food until after they do that and I'm sure that little turkey wrap from late last night has worn off by now.

Thank you for all the prayers and good wishes. It's been a long 15 hours but we have faith and are hanging in there!

Timing is everything

Just 2 days after our anniversary, Joe ends up back in the hospital. Yep, you read that right. I arrived home from the office today at 5:20pm to find Joe asleep on the couch in the family room. After he woke up, I touched his forehead only to discover him burning up. His temp was 102.7. Since the magic number for fevers and emergency department visits is 100.5 we were off to Duke. We only had to wait in the waiting room for about 15 minutes before he was called into triage and from there straight back to an exam room. They did an EKG, X-ray, drew several tubes of blood for labs and cultures as well as a urine sample. Long story short, there appears to be some type of infection but not sure where so they are admitting him for overnight observation. However, after 4 hours we are still waiting for a room. Joe has nodded off in the exam room and I am sitting here starving. Oh please, oh please let them get him a room soon so I can get some food and he can get good and comfortable and sleep some more. Regardless, it's going to be a long night!

1:00 am update - The transport came to the exam room around 11:20pm and got Joe. I went and got the car from the emergency valet parking and moved the car to the hospital visitors parking lot and then made my way through the tunnel to the hospital. Joe is in room 9320 so of course that is where I found him sitting on the side of the bed like a sad little lost puppy. He never did comment on the fact that I had to carry two heavy bags of his overnight things, battle with the old lady nazi guard on the 1st floor before I could get up to his room. Then finally at midnight I got down to the cafe and got each of us a sandwich. FOOD does a body good.

The doctor was in around 12:20 and said that they are going to do an ultrasound in the morning so no more food for Joe until afterwards. They suspect some inflammation in the area around the stint, possibly caused by some tumor growth. I need Dr. Zafar or Leigh!!

We have a great nurse, Grace Kwan, who brought me my own blue cancer floor socks! They are the bomb!!!!!!!! Not worth a hospital trip but it is one small perk if you have to be here.

1st Anniversary Weekend

First let me say, we had a blast!  With 82 people in our house on Saturday night for a little anniversay get-together it is hard not too.  The food was a hit, the cakes were a hit, the pineapple punch was a hit and the champagne punch was a big hit!  The best part however was the people though.  The smiles, the laughter and the conversation were the best ingredient for the night.  Rob Hugh & Lola Elliott Hugh were down from Connecticut and brought us a copy of the video that Lola had made from the wedding, the rehearsal and the trip to East Hadem afterward to the Bishopsgate Inn & Goodspeed Opera House.  The video played almost constantly throughout the evening and those that were interested sat and watched.  As the evening drew to a close, we were able to get some photos taken.  However, there were three cameras going at one time and no one was sure where to look.  But we laughed and had a great time.

Eventually we had to put signs up indicating which punch was the champagne punch and which was the alcohol free. 

We had 2 cakes but only put them out one at a time.  Once this one was done then the one with the rainbow rather than the baloons came out.  There wasn't an opportunity to take a photo of that one since it was only on the table about 2 seconds before being cut.  Eveyone loved the cake!

Lola was able to snap one photo of me and Joe in front of the cake just as the first guests began to arrive.  Once they started, it seemed like the floodgates opened.  It was great!

Of course we had flowers every where that we could.  Living room, kitchen and family room.

Of course, we had to have lots of roses as they are mine and Joe's favorite flowers.

As the party began to wind down, the camera's came out and we were smiling left, right and center.

Part of the gang at the end.

And a little more of the gang!  Back row: Lara Wood, Rob Hugh, Tracy Morris, Lola Elliott Hugh, Jeff Whicker, Kenny Hill, Artie Cline, Mike Heath.  Front row: Ethan Wood, Joe Lupton, Jeff Holland, Jill Boliek, Mark Boliek

The celebration wasn't complete until church on Sunday.  Joe and I had supplied the flowers for the Altar at PGUMC Sunday and were thrilled with the way it was presented in the bulletin.

And then the flowers themselves.  The florist did a wonderful job.

It's hard to get a shot together when you are basically alone at the church at 7:30am on Sunday morning so we had to split it up.  Maybe I'll try some Photoshop magic and put them together!

It was an exceptionally wonderful weekend.  Made so by our friends who came out in to help us celebrate.  We are especially glad that Rob & Lola were able to make the trip down.  Our 1st anniversary would have been missing an integral part had they not been here.  Lola even acquired a large number of new Facebook friends as a result of their trip!

Thank you to everyone who has expressed their best wishes on our anniversary, especially those at PGUMC who took the time when they saw the bulletin to come up to one or both of us and congratulate us.  You made the weekend complete for us.

Anniversary Weekend

It hardly seems possible, but it was 1 year ago this weekend that Joe and I made our trip to Connecticut to be married. Many things have happened since that weekend. Some absolutely wonderful, some nice, some not so great, and some terrible. But why dwell on the bad since none of the past can be changed? So I won't. Joe and I have stuck closer together than ever before through all the good and the bad. But this weekend, it's all good! Rob and Lola are coming for a few days to help us celebrate with a gathering of some friends tonight at our home. Hopefully I will have some photos to share tomorrow. The house is all cleaned (I'm sweating something fierce) and we are as ready as we will ever be!

Thank you to everyone who has reached out this past year to offer us their congratulations and support. Without you, this past year would not have been so special. We thank you and we love you.

Now i'll clean up myself and get some lunch. Have a great weekend!

Another in a long line of firsts!

Today is another day in a long line of firsts.  On November 11, 2010 was Joe's first oncology appointment; November 18, 2010 was his first stint placement surgery; December 6, 2010 was his first radiation treatment; December 13, 2010 was his first fever and admission to the hospital; December 21, 2010 first day of chemo ( Zeloda); February 17, 2011 first trip to the Duke Emergency Department; February 21, 2011 night before his surgery; March 11, 2011 first post surgical infection trip to Duke; April 25, 2011 first chemo (Gemcidobine); July 18, 2011 first appointment with surgeon  for hernia; June 21, 2012 first CT scan with negative results; August 2, 2012 decision to change to a more aggressive chemo; August 8, 2012 first surgery for port insertion; August 13, 2012 first chemo treatment with new regimen.

And here we are.  After early morning labs and doctors appointments, we were up in chemo at 9am but were not called back for infusion until 10 am.   So after all the pre-drugs, he is all hooked up as of 11 am with an end time of 3 pm.

Hannah came by for support and some laughs!

Joe all hooked up and going.

There are LOTS of drugs running.

He now has lots of bags of chemo flowing. Only thing missing at this point is the third chemo which he will get hooked up just before we leave. That one goes home with us with a pump for 46 hours. The best part of the day so far was the visit from one of Joe's favorite former students, Hannah Lingafelt. It was practically a party atmosphere in here for a while. It really lifted Joe's spirits to have her visit. There's a lot to be said for laughs and smiles!

Hopefully the rest of the afternoon will go as well as the morning. Time will tell......and so will I, later this evening.

Thank you to everyone for your words of encouragement and prayers. Both of us greatly appreciate it.

4 p.m. Update:  That's what time we finished.  All totaled, Joe was there for 9 hours.  However, in all due fairness, he was only hooked up to his chemo treatment and assorted other drugs for 5 1/2 hours.  Now he just has 46 hours of more chemo here at the house with what he describes as a "cute accessory".  I call it a fannie pack straight out of the 80's.......and I can't think of anything less cute :)

8:30p.m. Update:  We had supper brought in.  Joe ate alot!  Apparently his appetite was not effected by today.  He is very thirsty due to the drug they gave him when he had a bad reaction to the irentican.  He's drunk more than 64 ounces of luke warm lemonade since 6pm.  One of the side effects of one of the other chemo's is that he can't have cold liquids or foods for 3-4 days.  That also includes touching cold things.  No hands in the refrigerator for a few days.  He's complained the last hour or so about a slight headache but he is allowed to take tylenol so that hopefully will take care of that.  He has complained about being tired also. Come to think of it, he's complained a lot.......but I guess he is allowed.  As long as he can text with Jill for a couple of hours he will be fine.  Me?  I've mowed the yard this evening...sweated a ton....taken a shower and am POOPED!!!

Port In Place

Today was the day that Joe had his port placed in his chest.  We had to be at Duke Hospital at 7am this morning and were there in record time: 6:50a.m.  Not bad if I do say so myself.  But things at the hospital don't always run as timely as the cancer center.  So at 7:51am we were called back to the vascular surgical room to meet the anesthesiologist and nurse who would be assisting the doctor and to go over the procedure.  Then in came the doctor with consent forms and explained the procedure.  Then I was politely ushered out of the room with a buzzer in my hand.  As sad as that may seem for me, it was my opportunity to go to Starbucks and get coffee, which i was sorely needing by that point.  So after getting the largest cup I could get, I sat in the cafe to relax and enjoy my beverage....and talk to my sister....and talk to my brother in law...and talk to a friend.....and then run to the bathroom (I had been on the phone awhile and the coffee had worked it's way through so to speak.)

After my quick break, I headed on back to the waiting room with my trusty buzzer in hand.  I had barely sat down when the little old lady that serves as the information person (we have seen her many times as this is the same lobby we went to when Joe had CT scans before the Cancer Center got their own) called out "JOE LUPTON" and I raised my hand.  She was there to get me to take me back to recovery to be with Joe.  Buzzer never going off.  Not sure what the purpose was if all they were going to do is yell his name.  The little old lady has a good set of lungs on her.  By now it is around 10am so I am led back to recovery where Joe is eating 2 packs of Nabs and drinking a diet Coke.  He was very alert and talkative at that point.  About 15 minutes later he was like this.

Yep, just sleeping away and adding a few snores in here and there.  He later said he was trying to be sexy with the off one shoulder gown, but I think he had little to do with it since that shoulder is where the port was put and the nurse positioned it like that.   But I digress... The nurse, Valerie, came in later and showed me how to change the 2 dressings, which must be done daily and how to either cover the incisions/port with seran wrap or press and seal for him to bathe.  No moisture until it all heals up.  So for the new few days it's sponge baths for him!

By 11:30am they came to release him and wheeled around to the front while I went and got the car.  The instructions had said for him to drink clear liquids, broth or eat jello until he was sure he could tolerate food but since they had given him a diet Coke and nabs in recovery, we just went straight to Arby's drive-thru and got lunch.  After he had eaten and gotten comfortable on the sofa in the family room, I changed clothes and headed on to work.  He has texted and emailed me at the office so I'm sure he has done well, although he was supposed to be napping.  Hopefully he managed to get in a few Z's at some point today.

Thank you to everyone who has called, messaged, emailed and Facebook messaged today inquiring about Joe.  He came through it with little to no pain, however I suspect that tomorrow he will be a little on the sore side.

All prayers and words of encouragement are greatly appreciated and we do feel the love.



A Blog Post from a Friend

A friend of Joe's from his days teaching in Cumberland County recently post an article about him on her blog,  "LBTK Daily Living with a Christian Perspective".  Please take a few minutes to read what she had to say about Joe and some of the comments from her readers.

Music of my Heart - Joe Lupton

Post numbness

Well it's been a couple of days since the bad news and we have adapted somewhat. Friends have made the difference. At work, my bosses have been extremely understanding and have been very forgiving about the time I will need in the coming weeks to be with Joe as we settle into this new
routine. We were very touched on Thursday afternoon when the parent and grandparents of one of Joe's piano students surprised us with dinner & desserts (thanks Kara and John); then last night we were invited out to dinner by the Minnick family and then back to their home for dessert (Yum, cobbler!!). But the best part was the conversation and laughs. Jay and Allana are such wonderful people and so easy to be around. And of course the kids are the best (Micah, put the cell phone up). Then there are all the emails, Facebook messages and phone calls - so many people offering to help in any way we need. All of which is much appreciated.

So how are we? I honestly don't know where Joe's head is. We talk of being positive, of fighting, and I know that both of us mean it, but inside I don't know what he is feeling. Putting on a brave face for me is a specialty of his. Yes we have had tears and neither of us has slept well for the past three nights. We both get very tired, go to bed and are able to quickly go to sleep but he wakes up constantly throughout the night just as I do. Even this morning when I thought for sure I would be able to sleep late since the previous nights I totaled about 7 hours combined and I didn't need to get up early, but no, I was up at 6:30, wide awake as was Joe. Last night I didn't put my book down until around 1am, and woke up at least 4 times. Hard to get back to sleep. Had to resort to reading some more two times. Sad to say but even with a really good book, I can only read about 5 pages before my eyelids shut. However in this case it turned out to be a good thing. Maybe tonight will be better.

Today should be a reasonably busy day. E-cycle in the a.m., followed by lunch with two of Joe's friends from Roanoke Rapids and then a trip to Costco. Of course the Costco trip is Joe's favorite part of the schedule.

I sill have some "Fight Pancreatic Cancer" purple wristbands/bracelets if anyone would like one. Free and it means a lot to us for people to wear them. Please just ask if interested. I will be placing a new order next week. My goal is to get as many out there as possible (and also the proceeds go to pancreatic cancer research).

Thank you to everyone for your support. Please keep it coming. It is what is making the days easier.

'twas the night before......

...CT Scan results and there were lots of whispers, loud talking, television playing, typing and anything to detract from the elephant in the room--the results.  Joe had his labs and the CT scan on Wednesday morning.  Everything went fine and on time.  By 9am he was back home and relaxing with Dolly.  We haven't really talked about it but it's there, we both know it and the anxiety level just creeps higher as the night falls.

We did take an anxiety break Wednesday night and took a drive down the new 540 before the toll begins on Thursday.  I'm sure everyone is surprised at us taking such a thrilling adventure on the night before we get the scan results.  Yes it was an amazing experience.  We were both overwhelmed with excitement. We came back home exhilarated and astonished at all the fun we had.  Imagine, riding down 6 miles of highway without paying for it.  It's hard to match that when it comes to having fun!! :) (for anyone confused, that was filled with sarcasm).

But after a very long night, a VERY long mostly sleepless until this morning just prior to the alarm screaming in my ear, we're off to the Duke Cancer Center for the appointment with Dr. Zafar and/or Leigh Howard at 8:20 am this morning.

It may seem like it was a lonely walk for Joe over to the Cancer Center but I just had to hang back for the photo op.  I ran to catch up afterwards.  We're all checked in and waiting. 

The waiting is over and the results were anything but what we were hoping for.  Since the last scan 6 weeks ago, the tumor in the pancreas has grown approximately 20% more and is now at 3.8cm.  Also, several lesions have appeared on his liver, the largest of which is 1.7cm.  What this means, time to change to a much more aggressive chemo treatment.  First up, Joe will have a port inserted next Wednesday and then the first treatment will be Monday, August 13th.  No more of the 1 hr treatments.  The new procedure will last 5-8 hrs every 2 weeks with the addition of a 46 hr pump that he will go home with and then Home Health Care will come disconnect on Wednesday.  There are three drugs involved: Irinotecan, Oxaliplatin and 5-Fluorouracil (in case anyone wants to Google them).  The side effects will be more severe so we will just have to monitor and adjust accordingly.

Of course we are a little overwhelmed right now, and not in a good way.  It will probably take a few days or maybe longer for it to really sink in.  Numb is the word of the day I guess.  Joe has just gone back for some lab work in prep for next weeks port insertion and I'm sitting here typing and crying.  Strangely, here at the Cancer Center, that isn't unique behavior.

Joe came out from labs and we went downstairs to the food court so he could have breakfast since he hadn't eaten all day. A few more tears flowed from both of us down there as well.  It was while there that Joe had the realization that since he wasn't having chemo today he would have to pay for parking.  As if our day wasn't bad enough, now he has to fork over $3.00. 

To all those who have reached out to us with prayers and support, we thank you and hope you will continue to help us.  You are loved by each of us and greatly appreciated.