Weekend Update - Last Weekend of 2012

Not much to report since Joe's discharge from the hospital. It's been 4 days of sitting around watching TV and napping a lot. Most of the naps however have been due to Joe having continuous fevers. The first one was early evening on Thursday and they have been relatively consistent since then. Last night I thought we had turned a corner when after having a high fever in the late afternoon, he broke out in a sweat and by the time bedtime hit, his temp was normal. The first time since early Thursday. However we awoke to another fever this morning. We have been alternating Tylenol and Ibuprofen to manage them. We will be making a call to the Duke Cancer Center triage line early in the morning. Otherwise, Joe has felt okay. No back or belly pain. Grateful for that.

Have a wonderful and safe New Years Eve.

Thank you for all the well wishes, prayers, cards and messages.

2nd Day of Christmas Brings Discharge from Duke Hospital

Joe was released from Duke today around lunch time. Once we got home we made our Christmas lunch and relaxed for a while. A discussion of our upcoming train trip to Alexandria, VA did not go well since Joe and I were of different opinions as to whether or not to proceed with the plans. After much....errrr...discussion, Joe cancelled the train reservations. At least we got a full refund.

The CT scan results from yesterday showed growth in the lesions on Joe's liver. Not sure where we will go from here with regard to chemo choices. That discussion will be held with Dr. Zafar next week. Of course Joe is upset about it but he appears to be doing better than me. Maybe I've reached my breaking point. I don't know but all I've done since late yesterday is break out into sobs. Also I think I've gone past the limit of exhaustion. I wish I could sleep for the next week or longer.

No witty banter on this post I'm afraid. Just not in me.

Thanks for all the prayers, messages and get well notes. We appreciate each and every one of them.

Christmas at Duke

We've already spent Halloween at Duke this year. We came really close to spending Thanksgiving at Duke. Now we are managing to get the Duke Hospital experience for Christmas. Not exactly what we had planned, but we are together and that's all that is truly important to me.

Joe had been having severe back pain over the last few days and it had become obvious that the fluid was once again building up in his abdomen.  So I called the oncologist covering for Dr. Zafar today and he urged us to come on to the emergency department.  He called ahead so they were already expecting us.  We were checked in quickly, an ultrasound was done, fluid was drawn and he was admitted to the 9th floor all within 4 hours.  That's good service!  When we got up to the room, not only do we have one of our favorite nurses (Brittany), but our absolute favorite 9th floor doctor is here, Dr. Yvonne Mowry.....YAY!!

Thank you to the near capacity crowd that attended Joe's piano concert last night at PGUMC.  With it so close to Christmas, we were pleasantly surprised with the turnout.  I hope it helped get everyone in the Christmas spirit.

Hopefully this will be a short stay but neither of us will let it dampen our Christmas.  It's just a delay in getting to the presents and food.

Worship fully, Spend less, Give more, Love all

CHRISTMAS PIANO BY CANDLELIGHT

Sunday night at 7:00 pm, Joe will have his annual "Christmas Piano by Candlelight" piano concert at Pleasant Grove United Methodist Church.  It is a yearly tradition that has come to be enjoyed by everyone who has ever attended.  This years concert will include both new and previously performed pieces and should be excellent.  PGUMC is located at 4415 Pleasant Grove Church Road, Raleigh, NC 27613.  If anyone needs directions, please let me know.  The church is approximately 20-25 minutes from Chapel Hill, 15-20 minutes from Durham, 15 minutes from Wake Forest and 20 minutes for Clayton or Garner.  The concert will run under 45 minutes and there will be a small reception in the fellowship hall following.  All are invited to come and relax and listen to some beautiful piano pieces and escape from the bustle of the season for just a little while.

Worship fully, Spend less, Give more, Love all 

National Minute of Silence for Sandy Hook

At 9:30am today, internet sites across the nation will go silent for one minute and bells will toll from churches throughout American to remember the lives lost last Friday at Sandy Hook Elementary School in Newtown, CT.



An Answer to the Fluid Question

Some people had asked what caused the fluid build up in Joe's belly (a total of 4 liters was removed).  I emailed our oncologist at Duke, Dr. Zafar,  last night (he is undoubtedly the best...both doctor and caring human) and he emailed me back within 30 minutes and it was late when I sent the email.  His response: "The most common reason for the fluid is the cancer — it can cause fluid shifts in the body. It doesn't mean that the cancer is growing—it's just a common finding, especially with pancreatic cancer".  So we will just have to be vigilant for signs of more fluid.  Now that he has a history, it will be something they routinely check for.

Quick Addendum to Yesterday's Post - UPDATE

Joe had his ultrasound on his belly at 8am this morning at Duke Hospital.  Results, sure enough, fluid build  up in his belly.  They withdrew 10 pounds, yep, 10 POUNDS of fluid from his belly. Actually 4 liters of fluid!  That should hopefully make him feel much, much better and help to make his pants fit again!  I am so relieved.  They said this is common and could happen again.  Just keep a watch and if we notice a change (which I noticed 2 months ago yet no one would believe me) to go back and they can do it again.  Joe said it didn't really hurt so I am grateful for that.

This makes me feel a little better today.

Chemo Day.....Oops, No Chemo After All But Blood Instead

This past weekend was wonderful. Joes's choir at PGUMC put on a magnificent performance with their Christmas cantata. The combination of the 20 voices and 11 instruments was magnificent. I wish everyone could have heard it. Joe had worked so hard to pull it off and he did. Even when not feeling his best, he rose to the occasion and anyone that was at either the 8:30am or 11:00am services were treated to a beautiful program. We even got to see some of The Grove service regulars there to see and hear the cantata (Larry it was very good to see you).
Today however, reality was back as we had Joe's next doctor and chemo appointments. After dropping Joe off a little after 7am at the Duke Cancer Center for labs I went on to the office and Facetimed his appointment with Dr. Zafar. Joe's blood work was not optimal and thus Dr. Zafar wouldn't allow the chemo treatment. Instead, since his hemoglobin counts were low, Joe got a blood transfusion instead. This of course meant more blood work to verify blood type before he could get the transfusion. We had to wait 2 1/2 hours before he was called for labs and didn't get up to the infusion center until after noon. The wait before going back for the transfusion was 2 hours. But finally we got back into a room. It even is a room with a quasi view!

Still though, there was a wait in the room before the blood came.  Apparently they were experiencing difficulty with the tube delivery system and all drugs, blood, etc. were having to be hand delivered.  It was well past 3:00pm before it arrived and started flowing, but it did.  Joe's first comment is "it's like True Blood" (HBO vampire show).

Another observation (one i have complained about for two months) was that Joe's belly, where the hernia is, has gotten larger and larger and is now looking very distended and bloated.  Even Dr. Zafar's nurse noticed his belly as soon as she entered the exam room.  With that in mind, Joe is having an ultrasound tomorrow to see if there is any fluid build up or some other cause of the bloated appearance.  We will cross the bridge to treatment for that depending on what they find, if anything.  On January 2nd he will have a CT scan to give us a new "baseline" for where we stand as far as the tumors size and then he has a doctors appointment and chemo on the 3rd.  Also, his stomach issues don't appear to have been completely resolved, so he will be back on antibiotics for the next 10 days. 

So that has been today. We finally left the DCC a little past 6pm.  Not exactly what we planned on, but then it has become commonplace  for our plans to not go as planned.  Joe is handling it well.  He's tired of being tired and I'm tired of him being tired.  He however is much stronger than me.  He sits here calmly.  I sit here anxious with tears.  I was all smiles yesterday.  So proud of Joe.  So proud of the PGUMC choir.  I beamed.  Today I find it hard to manage a smile.  I need a good comedy...a good long, gut busting laugh.  Maybe I should just have Joe dance for me.  That's always good for a chuckle.

Thank you to everyone for the cards, emails and prayers.  We both greatly appreciate them.

"Worship fully, Spend less, Give more, Love all"

WOW...what a week!

Yep, it's been a good week.  Joe has been tiring of an evening, but other than one afternoon of a little 99 degree fever, he has been sick free.  He finished his antibiotics for the c-diff infection on Wednesday so he is down one pill to take.  He's had piano lessons, wonderful choir practice, lunch with PGUMC staff, lunch with me, lunch with friends as well as accompanying me to my office holiday party.  So there haven't been any real negatives and those weeks have been few and far between since August so I have been very pleased.

Joe has his next chemo infusion on Monday, November 17th so he's a little pre-occupied with that day looming.  Fortunately, he has the Christmas program at church to concentrate on.  Tomorrow morning the choir will have their last rehearsal before Sunday's two performances.  Saturday's rehearsal will feature the full 11 piece ensemble he has put together along with the choir singing.  I'm really looking forward to seeing how well it all comes together.  If Wednesday's rehearsal with just a handful of the instrumental ensemble present is any indication, everyone should be there on Sunday at 11:00am for the full production.  It should be beautiful.  Possibly better than last year and that is saying something because that one was great!

Then of course he is also preparing for his "Christmas Piano by Candlelight" piano concert on December 23rd at the church.  We just have our fingers crossed that he doesn't have a bad reaction to this weeks chemo and the effects have worn off/subsided in order for him to get through the concert.  It would be a shame for this traditional concert to not happen this year, so say a special prayer for that.

The concert is at 7:00pm at Pleasant Grove United Methodist Church, 4415 Pleasant Grove Church Road, Raleigh, 27613.  If you need directions, let me know and I'll send them your way if you don't have a GPS.  It's very easy to get to and it's a fantastic way to really get into the Christmas/Advent spirit.

Speaking of PGUMC, this week the first monthly "Ask Jay" podcast began.  It is only 19 minutes long but I think everyone who goes to PGUMC should hear it.  If you don't attend, I think you'll enjoy getting to know Jay Minnick our minister.  His personality really comes through in the podcast.  Also, Dave does a GREAT job as the host (but then he is a professional)!  Here's the link if you want to take a listen.

Podcast of "Ask Jay"

Now if Joe & I can just get our family visits during Christmas arranged and lined up all will be good.  Since Joe has his concert on the 23rd, two Christmas services on the 24th and then we leave on the train for Old Town Alexandria on the 28th - and all this coming the week after chemo - we aren't going to be able to travel to Hope Mills or Greenville.  So if the families want to see us, they are going to have to travel and it's been difficult getting timing arranged given everyone's different schedules.  But it will work out and all will be good.  I have faith.

Thank you for all the Christmas cards that are coming in along with the emails, phone calls and prayers during this Advent season.  Joe and I are both so grateful for our friends and loved ones.

I just keep repeating my mantra for Advent:  "Worship Fully, Spend Less, Give More, Love All"

Christmas Decor 2012

With all the issues surrounding our lives these days, it took a little longer to get the house decorated this year and we did cutback to one tree instead of the usual two (don't worry, we'll survive).

Only the one tree this year, but it's pretty enough for us.  The red bows are hung from e loft railing, poinsettias on the table and Santas in the corners.

Large ornaments are everywhere and the Christmas kitty Noel is on her perch.

Peace, Noel, Joy and my favorite Santa and reindeer.

A BIG pink boa wreath on the door along with a poinsettia in the reindeer planter and touches of red everywhere.

The table centerpiece is a large angel inside a wreath with beaded fruit next to them.  What de or would be complete without a Nativity scene and then a splash of snowmen and reindeer on the living room coffee table.

Little stuffed animals line the stairs, our rainbow Christmas tree is in the family room and then Joe's favorite decoration: his troll Carole's from his Aunt Cathy.

MERRY CHRISTMAS

Worship fully, Spend less, Give more, Love all

http://www.youtube.com/watch?v=yVjk1aV6xss

Living with Saint Joseph

To hear many people speak of Joe, one might think they weren't talking about a mere mortal, but possibly Saint Joseph (not the baby aspirin). However, none of those people actually live with him. Living with Saint Joseph isn't exactly what one might expect. At home, although still his charming self, he allows other parts of his personality to come out. Now I'm not saying that those other parts of his personality aren't good ones, they are just human ones. The non-saintly ones. Such as tonight when he decides to use the cancer card to get me to do something he wanted. Tomorrow he wants to go see a show in Raleigh. He knows, because I have said so on more than one occasion that I wasn't really in favor of going, however he has mentioned it every day this week, including tonight...."Jeff, can we go see that show tomorrow?" Can't you just see his saintly little smile while trying to get his way? Believe me, it ain't pretty.

But he has had a good week. He has felt good although tires easily, but each day that has gotten better. He was able to make it to staff meeting on Tuesday and have piano lessons as well as meet me for lunch; choir practice on Wednesday went off without a hitch; piano lessons on Thursday; and Friday was another piano lesson, lunch with a group of friends, an afternoon of organ practice at PGUMC, followed by attending the chorus concert at Leesville Road High School (great job Erica Hardy & Julia Daft!) and then home to me for dinner. So here we sit catching up on the TV shows we've recorded on the DVR all week and I'm yawning and excited to get to bed and SLEEP LATE TOMORROW.

Short post - good week - looking forward to the weekend. Come see the kids of the PGUMC Children's Choir at this Sunday's 8:30 & 11:00am services. They've worked hard and we are looking forward to seeing them perform. Should be great!

Thank you to everyone for all your words of support and prayers. Joe and I are blessed to have so many people in our corner (although Saint Joseph probably doesn't need as many as I do).

Pleasant Grove United Methodist Church

Decorations are all up at PGUMC!

The Christmon tree

The alter with the purple paraments.

The nativity scene and Advent Wreath

The wreaths are all hung on the front of the church.

The First Week of the Big Dose

As I said on my blog post on Monday, this week was Joe's first treatment with the increased dosage to last three weeks. There are several advantages to doing it every three weeks. Obviously there is the time savings by not going every week. There is the money savings by not paying the insurance co-pay every week and there is the less time away from work for me by not going to the infusion every week. Those are the pluses. We are now discovering the negatives: extreme fatigue, extreme joint pain and extreme "I don't want to do anything but lay on the couch" syndrome. Joe today questioned whether he wants to continue with the increased dosage or go back to each week. I think we will see it through the holidays with just the one more treatment on December 17th and then maybe after the new year, go back to weekly.....possibly.

We also got the lab results from the "specimen" jars he dropped off at the Duke Cancer Center back on Wednesday. He did test positive for the C-Diff infection but not positive for the Odon parasite. He's back on an antibiotic and having to supplement his diet with pedialyte and bananas. Not sure what purpose the banana has other than potassium but he's eating a couple a day. He was having a pretty good day today, better than the last two days, up until this evening when he started feeling nauseous and began throwing up. We had been so pleased that this treatment didn't seem to be causing any nausea, or at least minimal. We are hopeful that tonight is maybe from the C-diff and not the chemo. Regardless, he feels really bad tonight. It always seems to start on Saturday evenings. With his music all planned out for Sunday, it upsets him a lot when he has a bad Saturday. He then gets very anxious about how he will feel the next day. Me, I just stay anxious each and every day. It's really disappointing for this to be happening tonight since we've had a good day. We went to PGUMC this morning and I helped with the Christmas decorations and Joe practiced his music for tomorrow and then we had a quick lunch and a very quick trip to Costco. The Costco trip was shorter than usual because he was tiring. Another symptom he's been having the last three days is dizziness, and I don't mean the quirky kind. The actual room spinning, I feel like I'm going to fall down kind. There will be another call to the Duke Cancer Center triage come Monday with that symptom. I know that typically it can be caused by dehydration and that may be all that it is. I'm becoming quite the pusher of water and fluids. I'm also becoming quite annoying to Joe when it comes to that topic, I do believe.

We had Dolly cremated while we were in the mountains (that ever so brief trip) and this week we got her remains from the vet. We haven't gotten her a permanent container like we have for our last three kitties but we will. Until then, she will stand tall in her fake marble container from the vet's office. Her brothers are jumping with joy to have her with them in "kitty heaven" chasing butterflies. (Joe's words, not mine)

The photo is the urns for (left to right): Hannibal, Nona, Dolly, and Bud. Our family of kitties that will always be in our hearts and minds.

A Day Like So Many Others...

...yet so different.
Today Joe started back his chemotherapy treatments after a month off due to being hospitalized, on antibiotics and the Thanksgiving holiday. Before his last hospitalization, he had been doing his treatments every week. Now, however, he is doing them once every three weeks, getting a larger dosage (4 hours long). He had his lab and doctor appointments early this morning prior to his treatment. He saw Dr. Zafar and of course after last weeks fever there were lots of questions. Joe was a good patient and told him about every issue he has had in the last few weeks. Since coming off the antibiotics he has been experiencing some stomach issues so now he has to provide a couple of "specimens" to make sure he doesn't have a c diff infection. He is so looking forward to delivering the samples tomorrow. Since he was already scheduled to go back to the Duke Cancer Center tomorrow for a shot to boost his white cell count, he'll just have to make a detour to the third floor to drop off his two cups (hopefully in a non see thru bag).

What made this treatment different is that it was the first long one that I wasn't present for. I'm here to tell you that I didn't like it one bit either. It will be the first and last. His next appointment isn't until December 17th. If he can just stay healthy, keep fevers away and stay out of the hospital, then life will be good.

With the higher dosage, we can expect the accompanying initial symptoms to increase: more fatigue and more joint aches. Hopefully however, by the end of this week, the symptoms will have eased and he will have a couple of really good weeks before his next infusion.

We both really appreciate all the words of encouragement and support this past week. It wasn't the best of weeks but your concern has been a big blessing. Thank you.

While waiting to pick Joe up, I had a lovely ride around Duke Chapel.

The Thanksgiving That Wasn't

I had expected to be posting daily this week while we were on our Thanksgiving mountain vacation. It started off as I had expected, but didn't end up the way we had anticipated. As the only mountain post indicated, we arrived in Sapphire Valley Monday afternoon and had a lovely first night. The plan for Tuesday was to be a do nothing day and rest up from Monday mornings sadness and the trip itself. That is exactly what we did but by late afternoon Joe started to run a low grade fever. He took the Tylenol and then ibuprofen and we waited for it to come down. But it didn't. While it didn't skyrocket up quickly, by bedtime (not to be confused with his napping on the couch most of the evening) it was at 101.8. He went on to bed and I soon followed. I woke up around 8:30am Wednesday, made my coffee and watched a movie on my iPad. Around 11:15am, Joe still wasn't up so I went in the bedroom and felt his forehead, which was on fire. I woke him, got the thermometer and took his temperature: 103.6. I got him two more Tylenol and insisted he get up. That's when he told me than earlier in the morning he had awakened, taken his temp and it was 103. He had taken Tylenol then as well. After pestering him, he called the Duke Cancer Center and spoke to our oncologist, Dr. Zafar. Dr. Zafar told him that he would try to admit him to the hospital from the cancer center. Joe told him where we were and how long it would take to get to Durham...at least 5 hours. Dr. Zafar said he would check back in later to see if the fever had come down. That was when I starting packing and by 12:15pm we were in the car and on our way back to Durham. Not exactly the fun relaxing vacation we had imagined. We stopped in Brevard for lunch and after four hours from his last dose of Tylenol, he took more. By the time Dr. Zafar called us back, around 3:30pm, Joe's fever was down to 98.8, almost normal. The doctor told us to continue to monitor the temp, but since it was down, he would prefer not to admit Joe, which was great. By 5:20pm we were at home after a quick stop at Harris-Teeter.

Since getting home, Joe has not had his fever go over 99. He has had some slight back pain (the bed in the condo was dreadful, even my back hurt from it...not to mention two days of long car rides and just sitting around) but has managed the pain with over the counter meds. We had a lovely Thanksgiving meal on Thursday, went to see a movie on Friday as well as tried to go see one today only to find it sold out.

As I said at the beginning, I had expected to post daily during our Thanksgiving but have been a little down in the dumps so to speak and until today haven't even checked email. Mostly disappointed, mostly sad, mostly mentally fatigued, a little borderline depressed and distant. However, grateful for getting to spend the whole week with Joe although he would probably say I've been here physically but inside myself emotionally. I know I have been withdrawn a lot this week. But it's better today. Hopefully tomorrow will be even better.

Thanksgiving Trip Begins

It was a rough start this morning with the loss of our precious Dolly, but we left for our Thanksgiving vacation in Sapphire Valley at mid-morning. It was an odd drive considering how the morning began but I think getting away will be perfect for us. We have been here countless times and love the quiet and serenity of the timeshare here. I am very hopeful that this week will do both of us some good. A little rejuvenation time and I can't think of a better place.

Late breakfast at Krispy Kreme.  Finally got my coffee and Joe got his pumpkin spice doughnuts. Lunch was in Brevard at Zaxby's. That's Joe at the front door of the time share.

Couldn't ask for better views from the condo in Sapphire Valley.  Can't wait to wake up to sun over the mountain.

The living room is dominated by a wonderful stone fireplace. Can't wait to have a fire tonight (I'm sure I'll get a photo).

We have a small dining area and an even smaller kitchen. But plenty big enough for the two of us!

Cozy bedroom and a small deck overlooking the recreation center and mountains beyond.

Thank you to everyone who has sent us words of comfort and condolence on the death of our little Dolly. I just have to post this photo since every waking moment of her eight years with us was spent with her daddy Joe.

An Angel Got Her Wings Today

On March 30, 2004 Dolly Llama Lupton Holland came into our lives as a pet rescue from the Durham County Animal Shelter. She was a scrawny, near death, sweet, long haired tortoise calico kitty. Today, November 19, 2012, after a few months of serious illness, as Joe would say, she got her kitty wings in heaven. Rest in peace our sweet little girl. You were the joy in your daddy Joe's heart. Thank you for taking care of him when I couldn't be at home. Your daddies love you, miss you and will carry you in our hearts forever.

It's My Blog and I'll Whine....errrr...Write If I Want To

First off, the good news. We did hear from the oncologist today about the CT Scan results. He was specifically looking for any visible sign of what might have caused Joe's severe back pain from earlier in the week: a spreading of the cancer to the bone or surrounding tissue, a pocket of fluid build up, or a new area of infection. Short answer; none of the above were found. The scan was clear of anything new. Probably just an old fashioned backache from lack of mobility, a wrong turning motion or a pulled muscle. Either way, nothing to garner any further attention or action. Very good news from my point of view. Also, as of today, Joe is off his antibiotics completely. No oral or infused antibiotics. The last time he could say that was on October 28th. YAY!!

Now my whining ( I know, two posts in a row but it felt so good the last time). How to drive on I-40 or any interstate. Those of you that were with us in Disciple Bible Study last year and earlier this year know that I have a few road rage issues. But they are not my fault. If others would just drive correctly I would be fine. Who out there knows how the flow of traffic should be on a three lane interstate? The correct answer is that the slowest cars/trucks/motorized vehicles should be in the far right lane, the fastest cars/trucks/motorized vehicles in the far left lane and those that are driving at speeds in between fast and slow in the middle lane. If you are in the far left lane and the traffic in the middle lane is going faster than you, then move over to the middle or right lanes. If you are in the far left lane and there are vehicles lined up behind you, tailgating you, move over to the middle or far right lane. In other words, if you are impeding the flow of traffic because you are driving in the "fast lane" and are not going "fast" - MOVE OVER!
I know many people tell themselves that if the speed limit is 70 and they are doing 70 then they can be in the left lane. However, there are those of us who drive faster than the posted speed limit, especially on their way to work in the morning, and would find it beneficial if you did the posted speed limit in a different lane. Try 70 in the middle lane, you'll like it. I leave the house at 7:40 am every morning to drive the 1.5 miles to get to I-40, then 10 miles on I-40, and the approximately .75 mile from Exit 266 to my office in Chapel Hill. It takes every minute allotted to get there by 8 am. If there is someone in the far left or middle lanes dragging along, then I am late. I am the first person at my office. No one else is there for 30 minutes. I have no one to vent to if I have encountered difficulties. Do you know how frustrating it is to be frustrated and have no one to vent your frustration to?? Do you? I do. Practically every weekday. So next time you are in the "fast lane" and you see a silver Suzuki Grand Vitara with a DUKE license plate on the front in your rear view mirror, either speed up or move over, or you will be contributing to road rage frustration.

Wow. That felt good, but not as good as knowing that Joe's issues this week are not cancer related. We even went out to dinner tonight to Outback (Joe had never been to an Outback....hard to believe) and stuffed ourselves silly right down to the greasy bloomin' onion...we may both be throwing up tonight for a whole new reason!

Thanks for all the words of support and the prayers. We are extremely grateful.

A Quick Trip to the Duke Cancer Center Today

The last few days have been miserable ones for Joe. His back pain has increased in intensity each day. The pain has caused constant nausea and bouts of vomiting. He finished the infused antibiotic on Tuesday and had the picc line removed the same day. He spent much, and by much I mean all except for maybe 2 hours, in bed Tuesday with a heating pad on his back and taking his pain meds. He hardly ate anything and what he did eat did not stay with him very long. In the wee hours of this morning he got up and took 2 more pain meds without eating and of course within an hour or so, he was throwing up again. (See post earlier this year about eating when he takes his pain meds....a must do!). Joe had called the oncology triage number on Tuesday and spoken to our oncology nurse. She told him which of his pain meds should be most effective and to call again today if he wasn't any better. Well obviously this morning he wasn't so he called back. At first they thought he should go see his primary physician but an appointment there would not be possible until Thursday. Daryl, our nurse, called back a little later and said that Dr. Zafar wanted him to come in for a CT scan and had scheduled an appointment for 1pm today. So I left work at noon, picked Joe up and off to the Duke Cancer Center we went. We won't have the results for days but Dr. Zafar should have seen the results by days end and should at least know if the pain is coming from something cancer related. That is the biggest fear. We already know that one of the common symptoms of pancreatic cancer is a specific type of back pain but thus far, the area where Joe's pain has been is not typical. But time will tell.

One positive is that this afternoon the pain has eased off some. He was even willing to walk back to the parking deck after we left the DCC instead of waiting for me to drive around and pick him up. After stopping to get him some lunch, I dropped him off at home and went back to the office. Apparently he felt well enough after he had his lunch to make a quick trip to the grocery store for a few items. He even had dinner ready when I got home. Although his back is still bothering him, it is obvious that he is better. Hopefully this isn't temporary and he will continue to improve. The last time his back was hurting really bad it only lasted a couple of days. We are now on day 4 so I am very hopeful it has run it's course.

While I have your attention I have one pet peeve I have to get off my chest. Parking decks and the way people drive in them. I spend a lot of time in parking decks. Weekly at the one at the cancer center and then in the last few months, the visitor deck at Duke Hospital. What is it about a parking deck that frightens people so? I'm assuming it is fright that causes them to drive at a maximum speed of 2 mph while in the deck. And what is worse, why am I always behind them? Do they see me coming? For goodness sake people, the empty spaces are easy to see without crawling along. Some of us would like to just park and go inside. There are only a limited supply of spaces right by the elevator. I know we all want one, but you can see from 50 feet away if there is one. You don't have to approach them so slow. I am not saying that I think you should speed through the deck, but a solid 15 mph, still slow, but moving would help out those of us with someone sick or who have somewhere to be because, yes, even when leaving, I still get behind the car that is deathly afraid someone will back out and they won't see them in time to stop. Believe me however, at 2 mph, you will have plenty of time to stop. So if your reflexes are so slow as to make you afraid to drive in the deck any faster than a snail, consider calling a taxi. For the love of all that is gracious and holy, if you don't, you will be the reason that I end up in hell.
There, I feel better.

Radiology waiting room (actually just a small part of it) at the Duke Cancer Center

Rainy Days and Mondays....

...Always get me down.  Actually that isn't quite accurate.  I love rainy days and Mondays are usually only known for the end of the weekend and having to get up for work.  Not exactly a reason to be down.  At least not most of the time.  Today however was different.  No rain, but a down day.  After so many good days in a row, today was not a good one.  Joe began to complain of back pain Sunday evening and by this morning the pain had increased immensely.  So much so that he was sick at his stomach.  Throwing up first thing does tend to set the tone for a bad day.  He did come to see me for lunch today, which in retrospect was probably not the best move.  When I got home from work this evening he was still in pain and walking around with his pink basin from the hospital.  Use your imagination as to what those are for.   Tonight he was playing for a memorial service at church, and although in a lot of pain, and extremely sick to his stomach, he made it through the service.  He also made it home with about 5 minutes to spare.  Within seconds of taking an anti-nausea pill, he was once again throwing up.  My heart aches watching the misery he is going through.  However, we cleaned him up, got him some lightly buttered toast, he took his antibiotics, pain medication and another anti-nausea pill and went straight to bed.   I came to bed an hour later and although he is resting, I don't think he has drifted off to sleep yet.  The pain is still present and he can't take more pain pills for many more hours.  Hopefully sleep will come and tomorrow will be a rainy day and he can sleep late.  Nobody wrote a song about rainy Tuesdays have they?   As long as Joe feels better, I'll take any weather at all.

Much love to Noel, Kevin, Clayton and their families tonight.  Our hearts and deepest sympathies are with you.  Thank you to everyone who continues to pray for Joe.  Please say an extra one tonight.

This Weeks Draws to an End

It's Saturday night and this week is drawing to an end. And for the first time in many, many weeks, it has been a good one. Joe has not had a single fever, has felt good every day, has not had any real issues with his antibiotic infusions or tablets, had a good choir practice, good doctors appointment and NO hospital visits! All in all, I'd take duplicate versions of this week each and every week.

At this week's oncology appointment, Joe and Leigh decided that when he resumes his chemo, he will be doing the 1 large dose every three weeks. Since we are going away the week of Thanksgiving, he will start on the Monday after we return. The reason for the delay rather than starting the week of Thanksgiving: he will have to go to the infusion center the day after he gets his chemotherapy treatment to get a shot to boost his white cell count. Since we will be in mountains, that would be hard to do, so we will just wait another week.

Joe has been on oral antibiotics three times a day since he was released from the hospital and will be on them until next Saturday, November 17th. Also since his release he has been infusing a liquid antibiotic once a day for an hour through his picc line. That will end this coming Wednesday, November 14th. After his infusion that day, he will have the picc line removed. Dr. Zafar doesn't want anything foreign in him for any longer than necessary. The home health nurse will remove it after the infusion. Joe is really looking forward to that coming out. Wrapping his arm in plastic wrap and press-n-seal to take a shower is getting really old.

But this post isn't about complaining (which I know seems to be all I do sometime). Since the first of November, many Facebook friends have been posting something that they are thankful for each day. So with that in mind, I thought I might list some things I am thankful for as well.
1- I am most thankful for Joe. For the last 15 years he has given me love and strength. He has taught me how to be a better person and brought so much joy into my life that I couldn't possibly ever repay him.
2- I am most thankful for my family. My sister Phyllis, her husband Woodie, my nieces Aimee & Sara and my nephew Wayne. My brother and sister-in-law, Bill Lupton & Sandy Okasaki. They are a constant source of love and support. I know that I have sometimes taken them for granted but I truly appreciate how much they have done for me and for Joe. They love us unconditionally and show that love all the time.
3- I am most thankful for Pleasant Grove United Methodist Church. Everyone from our pastors to the staff to the choir to the general membership have been caring, supportive and loving in every way. I never thought such a large group of people could find a place in my heart in such a big way.
4- I am most thankful for my friends. Joe and I have wonderful friends who reach out to us all the time. I work with an incredible group of people who are always there to lift my spirits when I am down and to help me smile when I didn't think I could.
5- I am most thankful for Dr. Yousef Zafar & Leigh Howard. Our oncology team has been with us on this journey for 2 years and they have always made us feel that we are priority number one. They inspire us with their optimism and positivity. We have had 3 different nurses during the last two years: Minoka, Mark & Darryl - All three of you are treasured and both of us appreciate everything you have done for us.
6- I am most thankful for our radiologist, Dr. Czito; our surgeon, Dr. Tyler; and all the nurses and staff who helped us during those trying times.
7- I am most thankful for the nurses and staff of the 9th floor of Duke Hospital. We have made 6 trips to the 9300 wing. Every time the care that Joe and I received was incredible. Every nurse was caring in such ways that one would not think possible. They looked after Joe day in and day out, helped me day in and day out, comforted me on those bad nights, made me smile or laugh on those really bad nights and always treated us and our relationship with the utmost respect.
8- I am most thankful for my health. Even though I have always been the "sickly" one with all my allergies and aches & pains, I know what real sickness is.
9- I am most thankful for the readers of this blog. You take the time to read my ramblings because you care about Joe and about me. You take the time to comment and send words of support. You say prayers. You offer help. I write this blog as a way to help myself deal with things. I write to help my sanity. I write it with no expectations of it being read, but you do read it. I thank you.
10 - This one will seem strange. I am most thankful for the cancer. Don't get me wrong, I wish I could snap my fingers and it was gone. I wish this terrible disease had never reached out and touched Joe. I wish cancer of all types could be eradicated. But it is here and it is a part of mine and Joe's life. But even though physically it has done it's damage, it has not defeated us in anyway. What it has done is bring me and Joe closer. It has changed our relationship for sure, but for the better. It's hard to argue over the petty stuff (although Joe will probably disagree that I still argue over petty stuff). We have found a better level of understanding of one another, a better understanding of what we mean to each other. Simply, we are better together now than before. Three years ago we were plodding right along, taking many things for granted, maybe even taking each other for granted. We don't do that any more. Now we treasure every day and every experience. Cancer gave us that rather than taking something away. For that I am thankful.

Thank you for your prayers and words of support. I thank you and appreciate you taking this time out of your busy day to read this post.

P.S. I have received some very nice comments to this post from some highly cherished friends. Here is but a sampling:

"YAY!!! You know it's a good week when there are no fevers and no hospital visits!!! Enjoyed your blog post. Hope you get to savor the delight of a fever-free/hospital-free week. See you tomorrow." Allana

"What a beautiful post you wrote tonight. WOW! That is awesome to be able to be thankful in the midst of all you two are in the midst of! Very impressive! What beautiful people you are! God bless you both! Fondly," Fredda

"I am thankful that Joe has been fever free and hospital visit free this week.
I am thankful that Rob and Joe met on that first day at uncg in 1974.
I am thankful that you and Joe call us friends.
I am SO thankful that you came to Connecticut to get married and to renew/cement our friendships.
I am thankful I have met all the wonderful PGMC folks AND got bread!
I am thankful that you both get tender loving (and skilled care) at Duke.
I am thankful for technology like skype, imovie, iphoto, etc that helps bring us closer in funny Cheeto kinds of ways...AND in ways like seeing Joe's wonderful piano concert!
I am thankful for the blog that keeps us up to date.
I am thankful that we had such a WONDERFUL visit with you this summer. We still talk about it.
I am thankful that we have things to look forward to sharing together.
Hugs!" Lola

"Jeff, You are an amazing and gifted writer. When I read your words, I can just hear you talking – like we are sitting and chatting in person. That is a wonderful talent. So I am thankful for your blog. I love you both so much and I want to stay informed on how things are going. I want to know how you are feeling and how Joe is feeling. Through your blog you keep me in the loop. Dave or one of the girls will ask me once or twice a week if I have any news on Joe – has Jeff updated his blog, particularly when Joe is in the hospital. So I’m not only in the loop, I have become part of the loop of information and love and prayers. Love," Cindy H


"What a beautiful post! Indeed, dire illness often brings so many issues into their true perspective. It's the fire that can either destroy or burn out the dross from a relationship; I'm glad you two have come through thus far with a stronger bond." Jean

We Are Legal in Two More States

It's no secret that Joe and I are Obama supporters but there were other critical ballot items across the country Tuesday.  Some that have as important an impact on us as the presidential race.  We are now legally married in two more states!!!

Voters a continent apart made history Tuesday on divisive social issues, with Maine and Maryland becoming the first states to approve same-sex marriage by popular vote.

The outcomes in Maine and Maryland broke a 32-state streak, dating back to 1998, in which gay marriage had been rebuffed by every state that held a vote on it. They will become the seventh and eighth states to allow same-sex couples to marry.

"For the first time, voters in Maine and Maryland voted to allow loving couples to make lifelong commitments through marriage — forever taking away the right-wing talking point that marriage equality couldn't win on the ballot," said Chad Griffin of the Human Rights Campaign, a national gay-rights group.

Washington state also was voting on a measure to legalize same-sex marriage, though results were not expected until Wednesday at the soonest. Minnesota voters were divided almost 50/50 on a conservative-backed amendment that would place a ban on same-sex marriage in the state constitution.  The outcomes in the four states could possibly influence the U.S. Supreme Court, which will soon be considering whether to take up cases challenging the law that denies federal recognition to same-sex marriages.

Maine's referendum on same-sex marriage marked the first time that gay-rights supporters put the issue to a popular vote. They collected enough signatures over the summer to schedule the vote, hoping to reverse the outcome of a 2009 referendum that quashed a gay-marriage law enacted by the Legislature.  In both Maryland and Washington, gay-marriage laws were approved by lawmakers and signed by the governors earlier this year, but opponents gathered enough signatures to challenge the laws.  Maryland Gov. Martin O'Malley, who campaigned vigorously for approval of the marriage measure, spoke to a jubilant crowd in Baltimore, which celebrated with hugs, dancing and popping of balloons.  "Every child's home deserves to be protected under the law," O'Malley said.



The president of the most active advocacy group opposing same-sex marriage, Brian Brown of the National Organization for Marriage, insisted the Maryland and Maine results did not mark a watershed moment.  "At the end of the day, we're still at 32 victories and they've got two," he said. "Just because two extreme blue states vote for gay marriage doesn't mean the Supreme Court will create a constitutional right for it out of thin air."

In Minnesota, the question on the ballot was whether the state would join 30 others in placing a ban on gay marriage in its constitution, and the contest was extremely close with most votes counted. Even if the ban was defeated, same-sex marriage would remain illegal in Minnesota under statute.

Heading into the election, gay marriage was legal in six states and the District of Columbia — in each case the result of legislation or court orders, not by a vote of the people.

Day 3 After Release from Duke

Not much to really report since Joe got out of Duke. Sunday Joe played for both the 8:30 & 11:00 a.m. services at PGUMC and then we had lunch with a childhood friend of Joe's, Sarah Shutt. We get to see Sarah every 6 months or so but this was the first time she was able to be here on Sunday and join us at Pleasant Grove for church. We had a nice visit for lunch and then headed home. My family surprised us with a Sunday afternoon visit and then Sunday night, we made an early evening of it and turned in before our usual time. The time change definitely makes a difference on our internal time clocks.

Today Joe had an oncology appointment at 8:00 a.m. this morning after his 7:00 a.m. labs. Leigh was pleased with his lab work and his overall health. His counts were good so she was pleased. Joe continues on his two antibiotics - 1 oral and 1 IV through his picc line. He is tolerating it pretty well. A little nausea here and there but that is one of the noted side effects of both antibiotics. He manages it with this odansetron and compazine (or as stated in blog entries from 2010 & 2011 - the cadillac and ford of anti-nausea drugs).

Joe has felt well since his release. There have been no fevers thus far and he is resting as much as possible but admittedly is getting a little stir crazy. Tomorrow maybe he will get out a little more, but not overdo it. At least I hope not.

A big thank you to everyone for all the support last week, and the weeks & months before. It was tough but because of the prayers and support, we got through it.

He's Home!!...Again

Joe is home from Duke Hospital....again! This time he has his picc line and a whole box full of antibiotics to infuse over the next 13 days. A refrigerator full of little bitty baby like infusion bottles. Those along with pills will be a mainstay for the next couple of weeks. But he is home. I am physically and mentally exhausted. But he is home so I will sleep. He is home and he will sleep, hopefully.

Thank you.

Getter Closer to Going Home

Today we moved one step closer to Joe getting to come home. His bilirubin count continues to drop (1.1 today) and this evening they took Joe down to the surgical floor to put in a picc line. This is all in an effort to allow Joe to continue his IV antibiotics at home instead of staying in the hospital. Had he not had his port removed last week, the picc line would be unnecessary. But they did so this is the best alternative.

I worked today but had numerous conversations with Joe throughout the day. Apparently it was a good day with no fevers. He had one visitor and was supposed to catch up on some of his recorded HBO shows on his iPad. We shall see. I've had 45 minutes here of quiet to eat my dinner, watch non network TV which means no political ads, YAY!!!!!!.

He arrived back in the room at 7:31pm. I could hear him talking as they wheeled him down the hall. He did fine, was awake for it and apparently enjoyed seeing the vein on ultrasound. He's a strange one! He ate all his dinner and is now chomping down on peanut M&M's. Another 45 minutes and the antibiotics will start flowing.

Thanks for all the words of support and concern. We love ya!

Day 3 at Duke: Halloween 2012 Version

Joe started off the day with a low grade fever but was quickly given Tylenol and the fever subsided. Lab results from this morning showed his bilirubin down from the 3.5 of Monday to 1.3 this morning. Hopefully that number will continue to decrease to the .5 to .8 norm for him. Should have that answer after tomorrow's labs. Otherwise Joe has had a good day although a little tiring. Visitors most of the day and evening. Our nieces, Aimee and Sara came up from Hope Mills and spent the morning and early afternoon with him (Joe had a huge grin from getting to spend the day with Sara) and then this evening Mark and Jill came up and we all 4 had dinner together followed by Halloween candy and lots and lots of laughs. We always get together on Halloween so we saw no reason why a pesky hospital stay should interrupt the tradition. It made for a great evening.

Joe continues to be on two IV antibiotics: one every 8 hours for 30 minutes and one every 24 hours for 15 minutes. We haven't heard back from last nights cultures yet but it has only been 24 hours. We had been told he would have blood drawn for cultures daily, but thus far today, no blood letting. But since it happened twice yesterday maybe they have cut him some slack for today. His spirits are good as well as his appetite and general feeling of health. The jaundice has abated some so no pumpkin look today.

I went back to work today. Although I was worrying about him all day, even with the 9 or 10 phone calls and one FaceTime session, it was nice to be out of the hospital and back to doing normal, productive things. Mind you, I am not complaining. I am reminded of our first oncology appointment with Dr. Zafar almost two years ago when he said we would both adapt to a new normal. Our normal has changed repeatedly over the last two years, but even with the pain and anxiety, these two years have brought me and Joe even closer than we were before and have been filled with some incredibly wonderful and joyous moments. Those times are what makes these times easier. Those times and these remind me of just how much I love Joseph Lupton and what a gift and joy he is to me. Granted, I still am not amused by his sense of humor, once a nerd, always a nerd. But nerds are quite lovable. At least mine is.

He is sleeping soundly. I am wrapped in my cocoon in the chair. It may seem odd to some, but I think i could sit here watching and listening to him sleep forever. But of course the serenity will be shattered by a nurse any moment now with antibiotics. Oh well. That's what dreams are for.

Thank you to everyone. Our friends, our family: Bill, Phyllis, Sandy, Aimee, and Sara; all of PGUMC - Jay, Allana, Lucinda, Cleta, Fredda, Cindy H.,Chelsea, Challie, Donna, Julie, Ivy, Deborah - basically all of the choir; the nurses and staff of 93 at Duke Hospital (simply the most caring, sympathetic, compassionate people I've ever met - Lucie, Brittany, Jacquelyn, Heather, Britany, Lila, Jon, Sam, Joann, Stephanie, Katherine, Donna, Kim, and the list could go on and on); and my office for being so understanding about my absences (Kim, Dianne, Susan, Barbara P., Sandra and MA)....especially MA who was about ready to just leave the office to come be with me during Joe's surgery yesterday when he was not doing so well in recovery and I was quickly becoming a basket case. So many people that care. I hope all of you know how special you are. If I ever seem to take you for granted, call me out on it because I don't mean too. You have been my salvation. Thank you.

Can We Get Just One Break???

Just keeps getting better (please note that the comment is dripping with sarcasm and frustration).  Joe started running a low grade fever around 5:30pm.  By 6:30 it was at 101.1 so he got a couple of Tylenol.  Just before Lila left at 7:30, she took his temp again and it's at 102.4. Not good.  She had the doctor paged and they are adding another antibiotic. Can we get just one break???

Apparently the answer is no. Took me 30 minutes to build my cocoon in the chair and then Dracula comes in to draw more blood from Joe. He was sound asleep already. Second set of blood drawn in last 5 hours. Lights are on full blast. Then our very own nurse Jackie....well actually it's Jacquelyn came in to administer his new antibiotics. Maybe that is the last interruption for a while. 9:52pm

Surgery complete

Joe is out of surgery. There were some low blood pressure and low oxygen level issues in recovery so he had to stay a in recovery a little longer. They removed the stint completely. The surgeon said the bile duct was open and felt the stint was not doing anything. There was "sludge" in the pancreas and they cleaned that out. Surgeon felt having the foreign object, i.e. stint, was counterproductive and maybe the cause of bacteria. Back in room now. Oxygen levels are more normal and although BP is low, it is moving upwards towards normal.

This is what insanity looks like

This is what insanity looks like!

Joe had his scheduled oncology appointment this morning at 8am and it was there that he got the unfortunate news: the last blood drawn for cultures last week had bacterial growth....on Sunday night. That might explain his 2 fevers yesterday, especially the 102.8 last night. The infection this time however is E. coli. So he is back in the hospital looking at at least a stay until Friday. Also, with this mornings labs, his bilirubin count was at 3.5 instead of the normal .5 that he has hovered around since his last stint placement in January 2011. So the GI folks will be in to talk about doing another ERCP (down his throat to the pancreas) to see if the stint is clogged, moved or whatever might be causing the increased count. We won't know until later when that surgery will be but it will be very soon.

Meanwhile they will start him on new antibiotics to take care of the E. coli and the gram negative rods from last week. We are in a "steel room" again. Just like the one when Joe was in the hospital in December 2010. They are a real pain since you have to push the auto door opener on the wall to open or close. That means lots of light at night when the nurses come in. Arrrggghhhhh!!

My bad mood from yesterday just got worse. To make matters worse, Joe is eating my lunch. Is nothing sacred?

Stay tuned. I'm sure there will be more as more doctors check in.

2:45pm: Joe was taken for an ultrasound.  Got to see what that stint is or isn't doing.  I'm just sitting here watching news on Sandy.

7:00pm:  Joe just left to have a CT scan.  He should be back within the hour.  It's not that far once you take the elevator to the 1st floor.   I'm still watching news on Sandy (there is nothing else on! Arrrrrgggghhhhhh)

Okay, Joe is insisting that I tell this story.  While Joe was gone to get the ultrasound, the doctor came in (same one as last week - Dr. Lee) and thought I was Joe. She started describing what they were planning to do even telling me they would be doing an ultrasound. I said that "he is down getting the ultrasound now. They took him about 30 minutes ago" but that didn't seem to register. It wasn't until I said " I'm not the patient" that it finally dawned on her that I was not Joe. She says, "I'm sorry but you two look so much alike".... I know people start to look like their pets, but I truly do not see any 
resemblance between me and Joe. Oh well.

Tough, Tough Day

Typically, Sunday's are one of the better days of the week, but not this week. Sometimes doing what you want to do is not what you should do. Such is the case last night. We had been invited to a party at some dear friends house last night and after the week in the hospital we were not sure whether or not Joe would be up to it. He was feeing good all day, we had voted, gone out to lunch and stopped by the church for Joe to practice his organ prelude & postlude for Sunday and then gone back home and just "hung out". I'm not going to say I told you because I've done that many times today, but I had strongly suggested that we not go but Joe had insisted. Therefore I had said we would make an appearance but would have to leave by no later than 8:30pm so he could be home and in bed early. What's the saying, "best laid plans????"....well it was more like 9pm before we left and only after Joe had stuffed himself with lots and lots of spicy food.

At 4am this morning he was throwing up. At 5am this morning he was throwing up. At 6am this morning he was throwing up and running a fever. So there goes the call to the minister to let him know that Joe will not be at the 8:30am service. I went ahead and showered and came downstairs. Listening to someone purge their meals is not my idea of a great way to spend the morning. By 8:30 he was up, feeling better, ate a little (very little) breakfast, took his shower and we were out the door by 10am so we could make it to the 11am service. I admit that I was in a bad mood. I was pissed that this was happening again and I let Joe know it (I know, it's not his fault, its the disease, yadayadayada). Regardless, I was in a bad mood. I went into the church with him, made sure the piano lid was set for the service and promptly marched back out to the car to sulk. At 10:45am, Lucinda came out to tell me that Joe was feeling light headed and dizzy (I won't even comment on the dizzy part, just too easy). So of course, I went in to check on him. He was sweating and swaying. By then, Allana was there (she is a nurse) and told him the symptoms sounded like dehydration. Of course, perfect sense. If you throw up 3 times in one morning, you would probably be dehydrated. He downed water and made it through the service without any issue.

We came straight home after church and had sandwiches for lunch. I napped a little and Joe just relaxed on the couch. Since Wednesday is Halloween, he had arranged to have choir practice this afternoon at 4pm. So at 3:30 we headed back to the church and he had a very productive 45mins with the choir. Upon leaving the church at just after 5pm, as soon as Joe got in the car he started complaining about being cold and then the chills started. Before we could get home, he was shaking that teeth rattling shake that he does. He went straight to bed, I turned the heating pad on and that is where he stayed for the next couple of hours. The shaking stopped about 30 minutes later and the fever started. He took 2 Tylenol and rolled back over. It peaked at around 102.8, but by 7pm it was coming back down.

Now it's 9pm, he's had soup for dinner and is back up in bed. He has a 7am labs appointment followed by an 8am oncologist appointment at the Duke Cancer Center tomorrow. That means another early morning. I don't know what to think. Something has got to give. These fevers can't just keep coming and coming. He goes in the hospital, doesn't have the fever, comes out, has the fever. Frustrating!!

Thanks for all the good wishes and prayers. Please keep them coming.

Joe is home!!

As is evidenced by his Facebook post when he got online.

Hopefully the last night at the Club Duke Spa (hospital)

Joe is now on oral antibiotics so hopefully when the 48 hours are up from when the last lab cultures were taken there will be no growth of bacteria and he can go home. That blood was taken around 3:30pm Wednesday. So cross your fingers that we get good news tomorrow.

Joe had a good day. It was quiet, he watched some tv shows and walked 18 laps around the the 9300 floor. That's approximately a mile so at least he got some exercise. Tonight we were visited by Lucinda and Harrison Sullivan, which was great!

Joe has already turned in. The sound machine is going, tv is turned off and it's just me in the light of my iPad. I've taken my meds so hopefully soon sleep will come for me. Continued gratitude for all the prayers and good wishes. I am so looking forward to Joe coming home. As I've said before, hospitals make my head numb.

Thanks to Lucie, Ginger, Sarah, Chastity and all the staff on 93. As always, you do a wonderful job looking after Joe.

Joe is all nestled, snug in his bed!

And thus came the end of the first full day of this trip to Duke. It was an excitement filled day at the Club Duke Spa. Port removal, several visitors, antibiotics flowing, blood drawing, meals eaten, long phone conversations, FaceTime with me during lunch, and of course iPad usage. All in all not a bad day....considering he's in the hospital.

Joe also found the time to volunteer for another research study. This one on Bloodstream Infections Database/Repository. Once a teacher, always a teacher even if his blood is what will help with research. This must be at least the 5th study he has been a part of. Oh well, that's my Joe, always giving.

Anyway, since he did not sleep well last night, he is already sound asleep with little snores here and there.   Next interruption should be around 11 pm when he gets his next antibiotic (Zosyn).  Until then, I'll just watch a movie on Netflix.

Thank you to everyone.  This is easier because we know we have so many people praying and sending positive, healing energy our way.

I Have A Bacteria Name

I now have the name of the bacteria, not that it is much help.  I looked it up and very little of it makes much sense unless you have a medical degree.  But anyway it's Gram-negative rods bacteria.  If interested, you can find out more here: Gram-negative bacteria.

Anyway, Joe and I are facetiming during lunch and he looks adorable, especially his hair.  If anyone has a comb, he is in dire need! heheheh....sorry, I had to say it.  But he looks good, even in the bad flourescent lighting in his room.  Joe had a surprise visit from a friend and colleague from his days in Fayetteville today, Susan Williams.  I think getting a visit from her really put a positive spin on the day for him.  Thank you Susan.

Port Removal in Progress

They (the powers that be at Duke) have decided to remove the port that Joe had put in back in August.  This removal however is just a precaution since no bacteria or infection has yet to be traced to the port.  Whether he will have another port put in on the other side of his chest has yet to be determined.  The chemotherapy that he is on can be done via IV.  That isn't optimal, but it can be done.  They came for him for the surgery around 8:00am.  It is supposed to take around 1 1/2 hours but he will be quite sleepy and loopy afterwards (just like when they put it in).

He didn't have any fevers last night.  They started him on fluids around 6:30pm and then antibiotics around 8pm.  The antibiotics run for 30 minutes every 6 hours.  He ate well for dinner last night but was restricted to no food or drink after midnight for this morning's surgery.  They drew blood for cultures around 8:30pm and also needed a urine sample for culturing.  He slept well except for the usual interruptions.  More antibiotics around 1:30am, vitals around 3am, more blood drawn at 5am and then the final wake up at 6:15am when his nurse (Sarah) was in for her last check-up before the shift change at 7am.

They have identified the type of bacteria, but thus far I have not encountered a native English speaking doctor to tell me the name so I could look it up.  The doctor on the floor that was in for about 30 minutes last night was of Asian origin and although she said the name several times, I couldn't quite understand.  I didn't want to ask her to spell it for me, although I should.  I'm sure I can get the name from either Leigh, Dr. Zafar or Jason at some point today.   Speaking of Jason (Joe's former middle school student who is now a nurse in the Duke Cancer Center), he surprised Joe with a visit yesterday evening.  He had found out from another patient of his that reads our blog that Joe was in the hospital.  So he looked up the room (on the blog) and walked over to visit.  Just goes to show that once Joe has taught you, he has made an impact on you.  It also goes to the character of Jason.  He's very caring and dedicated to his profession and goes above and beyond the call of duty.  Thank you very much Jason.  It really lifted Joe's spirits to have you come by, as well as mine.

So today, I'm at work awaiting word once the surgery is done.  I'll keep pestering Joe on his cell phone, room phone and iPad until I get a response.  Or I can break down and call Duke for information.  I know this is not a major procedure but I still worry and won't take a deep breath or sigh of relief until I know he is out, conscious and talking to me.

Thank you for the prayers and words of support and concern.  We need a little extra right now and everyone is coming through.

9:31a.m. Update:  Joe is out of the surgery and eagerly awaiting his breakfast in his room.  It was painless and he is doing fine.

9:57a.m. Update:  Joe called again after his breakfast.  The oncologist on the floor came in (Dr. Riedel) and told Joe that the plan as it stands right now is to keep him on the antibiotics.  Apparently, the bacteria that has been identified has only been indentified by the family of bacteria, not the specific bacteria.  Until that is done, the general antibiotics will continue.  Once they zoom in more specifically, he will change antibiotics.  When released (earliest would be Friday), he will be on antibiotics at home for 2 weeks (no chemo).  They are doing another round of blood cultures this morning.  When they removed the port there was no sign of infection in the port site but they did flush it really well as a precaution. 

Bacteria, Bacteria Please Go Away

Joe got a call from Leigh Howard, our NP at Duke before 8am this morning that one of the blood cultures that were drawn yesterday has already (in less than 24 hours...which is really quick) started bacteria growth.  This means that once again there is bacteria in his bloodstream.  What this means is a trip to the "Duke Spa" i.e. hospital once again.  Most likely during this stay they will remove his port.  Although, the growth came from the sample that was drawn from his arm, not the port.  Time will tell as to exactly what they will do.  I am at work, early I might add and have already entered a listing.  Joe is busy getting his hospital bag together, calling the vet to get more drugs for Dolly and ultimately waiting for the hospital to call and tell him to come to Admitting when they have a room for him.  Looks like we will be seeing our friends on 93 again really soon.  As much as I hate that he is going back in, I am so very hopeful that they can pin-point the problem and get these fevers under control once and for all.  My nerves & emotions have been all over the place the last couple of weeks.  Until the call comes, I will wait at work and Joe will clean himself up and wait at home.

Cancer is a huge pain in the a**!

At Duke now waiting in admitting for someone to come get him to take him up to the room (3:30pm).

Wow! The fastest time in admitting ever. It's 3:40 and we are already up in the room (9307)

The Weekend That Was and Then Today's Chemo

This past week as earlier written about, Joe’s brother Bill and his wife Sandy, came for a visit from Las Vegas. The best thing about Bill & Sandy visiting is that you don’t feel you have to entertain them. The purpose of the visit was just that: a visit. Time for them to spend with us and us with them. Whether it was laying around watching football on Saturday and arguing with Bill about the scheduling differences between Vegas and here (when he gets up and ready to watch College Gameday in Vegas which comes on ESPNU at 9am EST and ESPN at 10am EST, he gets to start watching it at 6am or 7am there). Of course he was up early on Saturday and fussing and moaning about the lack of the show until 9a.m. We had some good bickering over that. Then when the games start, I’m watching 2 in the family room (PIP) and he is watching one in the kitchen and has his computer up and running. Not sure if there was one on it or not. But then we argued about which was a better game to watch and so on and so on. It was a lot of fun. Joe has no football interest so it made my Saturday to get to bitch and moan with someone. Sandy meanwhile just kept commenting that this was what she had to deal with every Saturday. Apparently control of their DVR in Vegas is a big issue. Joe and I don’t have that issue. I get what I want, plain and simple. But we had a great visit.

The day before, Friday, Joe and Bill had driven to Wilson to meet their mother and sister at Bill’s Bar-B-Que for lunch. The lunch lasted around 2 hours, they had nice conversation, no confrontation and both left with a bit of a sigh of relief I think. It was the first time Bill had seen them since the “blow-up” in March and except for their Aunt Sue’s funeral, it was the first time that Joe had seen them as well. Truly the first time for each of them to see each other and have a conversation face to face. No issues were addressed, mostly in an effort to not cause any more conflict and keep Joe calm. He was a bit tired after the return trip so we ordered Randy’s Pizza and picked it up for dinner. I think all 4 of us enjoyed that and were able to just relax around the house.

Besides Saturday’s afternoon football, there were naps by everyone. Me and Joe on the couch in the family room (it’s and L shaped sectional) and eventually Bill & Sandy upstairs. Later in the afternoon we all cleaned up and went out for dinner to our favorite sushi restaurant, Shiki Shushi at Homestead Market on Hwy 54. Once again we all enjoyed it and were home around 7:30 and then proceeded to watch the DUKE- UNC game on TV. Yes, I actually watched a Duke game. Football doesn’t have the same effect on me as basketball, mostly due to my complete lack of interest in ACC football (which I have historically considered a joke as far as being competitive with the rest of the conferences mainly the SEC and BIG10 – Let’s face it, the ACC sucks in football). But I digress. We watched the game downstairs up until UNC went ahead at the 3+ minute mark. At that point, I saw no need to stay downstairs and watch since Joe and I had to be up at 6am to get to church by 7:30am the next morning. Joe had already gone upstairs to prep for bed so I followed. However, I did turn the TV on upstairs, paused the picture and prepped myself for bed. By the time I was ready to climb in the bed, I popped on the iPad and checked the score on ESPN. The game was over, I knew Duke had won so I unpaused the TV and finished the game while remaining calm. I didn’t even wake Joe. Of course had it been basketball I probably would have been loud enough to wake the neighborhood. But it was just football. Fun night just the same.

Sunday brought our early morning trek to church for the 8:30am and 11am services. I got a lot of religion on Sunday by attending both services. Usually I am just recording the 8:30am service and have my headphones on up in the recording loft listening to music or some show on Netflix streaming but since I was assisting with communion at the 8:30 service, I actually sat in the pews. It did however give me a chance to sit with Dave & Kelsey and catch up a bit with them. I rarely get the opportunity so it was nice for a change and I always enjoy their company. The 11am service is the one the bulk of my closer friends at PGUMC attend so I felt I needed to attend that one as well so I could see those special people that have been so supportive of me and Joe. Besides, the choir was singing and I wanted to hear them.

After church we came home and the four of us went out to eat for lunch at Rick’s Diner (can’t go
wrong there) and then over to A Southern Season since that is one of Sandy’s favorite stores when
she visits. We were having a good time, Joe buying chocolate by the pound and eating it
(diabetic?????) while Sandy shopped for her favorite items that she has purchased on previous trips. She really likes that store, but then who doesn’t? During this time, Joe excused himself to go to the car saying he was tired. I should have just followed him on out but didn’t. When we did finish and I went to the car he was complaining of being cold but said otherwise he was fine. After stopping at Fresh Market for Pimento Cheese & Chicken Salad, he returned to the car having severe chills. I was not happy. We went straight home and I ordered, yes ordered, him to bed. He was still several hours out from being able to take Tylenol so he had to cuddle under the covers. When I took his temperature after making him some hot tea (which he never drank) it was at 103. So we waited the 2+ hours until he could have Tylenol. Why the wait, because unbeknownst to me, when we got home from church he took his temp and it was high and took some then. Had he just mentioned that he was running a fever, we would have done the afternoon different. Maybe lunch at Rick’s and then dropped him off at home. I could have taken Bill & Sandy to A Southern Season while Joe rested. But as he put it, “I didn’t want to ruin the afternoon”. So instead, he runs a massive fever getting everyone all worked up and upset. Not his smartest move. I was extremely angry at him for not telling me the truth about what was going on. He has promised over and over to tell me the truth about how he is feeling, but once again, he kept it from me. This has got to stop! Maybe my less than happy demeanor will have gotten through to him this time. Only time will tell. Anyway, we took Bill & Sandy over to the Marriott on Sunday night so that they can use the hotel shuttle to get to the airport today since we will be at chemo. It was a wonderful visit and I am so grateful to both of them for coming to visit. Even with the bumps, it lifted Joe’s spirits so much to see the 2 of them and get to spend the time with them. Sandy even spent quality time spoiling Dolly. Of course as we drove off from the hotel, Joe became very emotional. He loves and respects his brother so much and is so thankful and appreciative of the support that the two of them have shown us. The tears flowed as we went back home but mixed in with the sorrow for leaving, was a happy vibe that he had gotten to spend 4 days with them. We both just wish we could see them more often. But since our travel plans are somewhat limited by Joe’s treatments, it pretty much is put on them to travel here, so that obviously isn’t fair to them. But as long as we get a fix every year or so, we can manage.

The fall foliage outside A Southern Season

Joe is at the Duke Cancer Center as I type.  I have just finished Facetime with him during his doctor’s appointment.  Since his temp did get so high yesterday, Leigh has ordered some more blood work drawn for cultures.  103.1 is high.  So Joe is now heading back down to level 0 for lab work before heading up to the 4th floor for chemo.  Me, I’m just waiting for staff or someone to arrive here at the office, so I can leave to go meet him.  I had almost nothing to do here this morning except dodge leftover pumpkins from our office Pumpkin Patch this weekend.  We have lots of orange in the lobby (at least it is a color).

I made it to Duke around 9:30am, got my coffee and joined Joe in the chemo waiting room.  It wasn't a long wait before we went back to an infusion room.  Then we got a surprise visit from Dr. Zafar.  He came for two reasons: to ask if Joe would participate in a study (non-medical) and to inquire about the weekend fevers.  He was not pleased to hear about the teeth rattling chills and 103+ fever.  To say he was concerned is putting it mildly.  The have drawn blood for cultures already and we will wait the 48 hrs for those results but it is highly likely that they will remove Joe's port and put a new one in the other side of his chest.  This would have to be done 2 weeks apart, keeping Joe off treatment during that time.  Dr. Zafar was emphatic that the chills and such high fevers are not chemo related.  So time will tell on that front.  Today however, up in chemo, he is running a 100 degree fever again so they have let him take some Tylenol.  They'll be checking it again I'm sure.   

Unlike last week, Joe is awake and very talkative.  Not sure which I prefer; sleeping Joe or talking Joe. Talking Joe is keeping me from watching Netflix though, so sleeping Joe might win.

Construction on the Duke Expansion is moving right along.

I hope everyone has a great week and I will let everyone know if there are any "unfortunate" results from the cultures which would result in a possible "Duke Spa" visit....UGH!  Thank you for the prayers and words of support.  We are so grateful.