Sunday, December 30, 2012

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.

Wednesday, December 26, 2012

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.

Monday, December 24, 2012

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

Saturday, December 22, 2012

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 

Friday, December 21, 2012

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.


Wednesday, December 19, 2012

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.

Tuesday, December 18, 2012

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.

Monday, December 17, 2012

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"

Friday, December 14, 2012

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.


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"

Sunday, December 9, 2012

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

Friday, December 7, 2012

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).

Sunday, December 2, 2012

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.

Saturday, December 1, 2012

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.

Vaccination date set

 This morning at 8 a.m. we began the process of trying to get an appointment date.  I had 3 appointments at the Duke Cancer Center so I was ...