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. 

Busy Day, Get a Fever

Quick and simple.  Joe has had a busy day: trip to Wilson with his brother Bill to meet his mother and    sister for lunch.  Apparently it was a nice trip and meal and they made it back by 2:30 this afternoon. Sandy stayed here at the house and occupied herself with the computer and watching after Dolly (who is not doing well health-wise).  Joe however probably overdid it and is now running a bit of a fever.   So it's take out for supper and Joe gets to lay on the couch.  Next Tylenol time, 9:00pm.

Have a great weekend!

Saturday morning a.m. update:  by bedtime Joe's temp was back to normal.  Spiked to mid 99's during the night but this morning was 98.3 again.  Makes for a better Saturday morning outlook.

Monday May Have Been A Sign

So far so good.  I'm almost afraid to mention it but since Joe's chemo treatment on Monday, he has done very well.  No fevers thus far that have surpassed the 99 mark and he has pretty much done all his normal activities: piano lessons, choir practice, staff meeting, a little shopping and even a trip to Costco.  Now you know if he can make it to Costco he is a happy camper!  

We are both very excited that Joe's brother and his wife, Bill and Sandy, are coming to town today.  They are scheduled to arrive at 4pm and Joe is picking them up at RDU Int'l Airport.  It's so nice having the airport 10 minutes away.  Even if on time, it will probably be between 4:30-5pm before they get to the house.  I should be home from work by 5:15 and can't wait to see them.  However their last visit was marred by Joe's first hospitalization.  That's not happening this time!  I will do whatever is necessary to stay away from the Duke Emergency Department.  That shouldn't be too difficult to do since Joe managed to lose the thermometer.  He managed to do so without even getting off the couch too.  It boggles my mind how you can lose something without moving....but he can, and did.  But alas, my office is next to a pharmacy so I bought a new one.  Apparently they don't roll out new models of thermometers every year like cars.  We had the old one, before Joe lost it, for at least 7 years and the new one is just like the old one.  Who knew?

Last spring, Joe and I purchased a memorial brick to go in front of PGUMC.  Lo and behold, last night at choir practice, the bricks were in. Of course I had to take a photo.  There we are, memorialized!!

Our wedding anniversary on a brick! Isn't that romantic? Hehehehe

Anyway, the most important thing is that Joe has made it to Thursday without ill effects from this round of chemo.  Fingers are crossed that it continues through the weekned.  We are back at the Duke Cancer Center bright and early Monday morning for 6:40am labs again. WooHoo!  (fake excitement)

I hope everyone has a wonderful and safe weekend.  Thank you for the caring and the prayers.  Our friends are the best!

Chemo Day Went Smooth As Silk

We couldn't have asked for the day at the Duke Cancer Center to have gone any better.  Maybe it was just an anomaly or maybe the powers that be were trying really hard to make up for the last couple of treatments but everything was on time.  However, it may also be that Joe's appointments were the earliest he has ever started.

Labs were at 6:40am (yes, ladies and gents, that is very early to be up and at the DCC), doctor's appointment at 8:00am (we've done that before) and then his chemo appointment was at 9:30am.  I dropped Joe off in front of the DCC at 6:30am and headed on to my office (another first, never been there at 6:45am either).  By 6:56am we were texting and Joe was already down in the food court eating his breakfast.  He checked in on the 3rd floor (doctor's offices/exam rooms) at 7:38am and at 8:15am we were talking via Facetime while waiting for Leigh Howard to come in.  She was in there very soon after and Joe checked in on the 4th floor (Chemo Infusion) at 8:52am.  I left work at 9am to head over to the DCC and arrived at 9:20am (traffic was a pain).  Joe had already been taken to one of the infusion rooms so the lady that always talks to me at the reception desk, escorted me back to Joe.  Of course I had stopped at the cafe and gotten my coffee- with employee discount - a sure sign I have been there too much!  Therefore by the time I got to Joe's room it was 9:35 and he already had his fluids hooked up and running.  Apparently, he went back at 9:30am on the nose!  That is a HUGE first.  Within 15 minutes they started his Benadryl and about 10 minutes later, he was getting sleepy.  He tried to watch last nights episode of "Revenge" on his iPad but it didn't take long before he was out like a light.

From there on for the next 2 hours, it was really exciting sitting with him as he was hard and fast asleep.  I guess if you have to have chemo, it's best to sleep through it!  He finally woke up around 11:30am, but only because he had to go to the bathroom.  I unhooked the IV machine and he started walking down the hall when the machine starts beeping because one of the bags has finished.  Since he was right next to the nurses desk, he joked that he brought the machine to them instead of having them walk to his room.  They turned off the beeping, he continued on to the bathroom and within 15 minutes of his return, his infusion was complete.  By 11:50 we were walking out the front door and into the rain (with a small umbrella) on over to the parking deck.  Joe handled the Benadryl much better this time and was steadier on this feet so I let him (yes LET HIM) walk instead of pushing him in a wheelchair like last week.  Also this week we had a perfect room next to the outdoor patio area for infusion (it wasn't very well thought out by the designers but is quite lovely).  Too bad it was raining the entire morning or I could have gotten a little sun since Joe was sleeping.

Hopefully this week Joe will react better and not have the fevers on a daily basis like last week.  Only time will tell as far as that goes.  But one thing is for sure, we will enjoy the extra sleep time in the morning!

Thank you for all the prayers and concern.  Joe and I are so blessed to have friends who care so much for both of us.



As the World of Joe Turns

As this weekend arrives I thought I should update how well or not so well Joe has done with the new treatment.  As you know, he began the week with treatment on Monday of his new chemo regimen of Taxol.  He did great Monday afternoon, evening, throughout the night and all day on Tuesday.  Fatique and nausea were at a minimum or non-existent.  On Wednesday morning he was once again feeling very well.  So much so, that he went for a long walk around the neighborhood early Wednesday afternoon.  Perhaps he had deluded himself of what he could handle or perhaps he just got a little carried away, but he ended up making it about a 45 minute walk, up and down the hills of our neighborhood.  Right after that, he launched into making our dinner (meatloaf) and so by the time I got home at 5:20pm, he was running a 102.1 degree fever.  He had commented that he was feeling tired, but had gone on the walk and cooking anyway.  With that fever, he knew there was no way he was going to be able to have choir practice.  But since this Sunday the children’s choir is singing, he wasn’t too upset.  He started emailing, posting on Facebook, texting and I started calling his choir members.  By 5:45pm we had contacted everyone so he felt better knowing that one of them wouldn’t show up at PGUMC just to find the doors locked.

After taking Tylenol and taking it easy, by 10pm his temp had dropped into the mid 99’s.  He did sleep well Wednesday night and woke up Thursday once again feeling pretty good.  However, by mid-afternoon, the fever was starting to inch it’s way back up reaching 100.8 by 3:30pm.  This is where Joe just doesn’t listen.  He had been told when he was in the hospital and by his oncologist and oncologist NP that he could take the Tylenol every 6 hours and in between doses he could take Ibuprophen.  So Joe, in his infinite wisdom, took Ibuprophen at 3:30 instead of Tylenol thinking that he had to alternate between the two drugs.  The Ibuprophen had little to no effect, so when he informed me of the fever, I told him to go ahead and take Tylenol since he had not had any since 7:00am Thursday morning.  He said he couldn’t.  I told him to call the triage number to verify if he didn’t believe me but that he could take the Tylenol regardless of when he had taken the other drug.  One had nothing to do with the other with regard to interval of usage.  Of course he did not believe me, but he did call.   It was then that he had to say those words that he hates: “You were right, I was wrong”.   He almost choked getting them out.  So he took the Tylenol and within an hour, his temp was coming back down to the 99’s.  However, that meant yet another week of missed Bible study.  Seems like by the time we make it back, they will be finishing Revelation.

Today, he has felt good, temp has been normal and he has been able to resume normal activities including a piano lesson and out to lunch with Mike.  Tonight I will be going to bed early as my fall allergies are kicking into high gear (thank you rain…you’ve made it worse).

Tomorrow will be a day for laundry, football on TV and maybe, just maybe a trip to HomeGoods to see if they have any new & interesting Halloween decorations.

A big thank you to the PGUMC Chancel Choir for being so understanding.  Each response was a prayer for Joe to feel better.  You are a wonderful, caring group of people (and not a cult even though some people say you are!  HAHA)  Thanks to everyone for the prayers, good wishes and supportive words and deeds.  I can sit here typing this and smile because of all of you.

Day One of Taxol Begins

Today the new chemo regimen begins. The technical name is Paclitaxel, but they just refer to it as Taxol (the brand name). The list of possible reactions is long but the most common are signs of infection/fever, chills, cough; low white blood cell counts; numbness and tingling in hands and feet; muscle or joint pain; nausea and vomiting; shortness of breath, flushing of face; hair thinning or hair loss; skin rash, itch; diarrhea; bruising, bleeding, red spots on skin. Sounds pleasant huh? But most every one of these were side effects from his last two regimens and his were minimal so at this point we can only hope for the best. Only a couple are new possibilities. The one major change, the fever limit is 100 degrees now. We will be doing more triage calls rather than emergency department visits, hopefully. There is a recurring theme here today: hope.

We are back in infusion now waiting for the pharmacy to send up his chemo. Good part, Joe's former Stedman Jr. High student, Jason, is his nurse today. Joe always gets a little extra attention when Jason is in charge. Right now he is getting his pre-fluids and relaxing in the lounge chair. Since this infusion is shorter, he got a choice of a chair or bed and chose the chair. That is my selfish choice too since I get a nice cushioned semi-recliner too.

This weekend was a very good one for Joe. He was able to do the Durham Public Schools All-County Chorus rehearsal on Friday and then the performance on Saturday as the accompanist as well as both church services at PGUMC on Sunday. Then last night. Our cousins Steve and Darr visited from Asheville and we went out to dinner and then to DPAC to see "Warhorse". I hope lots of people had the chance to see it as it was an incredible show. Emotional, extremely well acted and the mechanical/puppeteer horses were amazing. We were all awestruck by it. Truly a great way to end the weekend.

I dropped Joe off at 7 a.m. at the Duke Cancer Center for him to have his labs today and I went on to the office for an hour and a half. I was back here a little after 9 a.m. (his scheduled chemo time) but instead found him still waiting to see Dr. Zafar. So I got to join in for the doctors appointment too. Now we wait for his infusion, and see what if any reactions/side effects he has. Time will tell. Right now he is on the edge of a nap. Once they do get him going, I might try that myself.

It was a great weekend and we are looking forward to an equally great week. Take care folks and thank you for the caring and the support.

Good News, Bad News

Or not so great news, but not terrible news.  Trying to put a positive spin on today's doctors appointment at the Duke Cancer Center to get the CT scan results from Sunday.  The not so great news, at least a couple of the lesions on Joe's liver have increased in size.  The better news is that the tumor in the pancreas seems to have shrunk just a bit.  The growths in the liver are not large, but growth none the less.  Dr. Zafar and Leigh Howard were hopefull that the new 3 chemo infusion regimen would show better results and therefore he is switching Joe to another regimen.  Another reason for the change, all the fevers that Joe has been having.  Although they can't difinitively point to the chemo, they can't rule it out as a side effect.  Therefore it's on to a new treatment. 

Initially this one will be every Monday, about 2 hours of infusion time.  If Joe tolerates that well, then it can be administered once every three weeks as one 6 hour infusion.   So we will start with the weekly and possibly move up to the longer treatment.  Needless to say, once every 3 weeks would work better scheduling wise, but if he doesn't have a positive reaction with regard to side effects, then a massive 6 hour dose might not be a good alternative.  Only time will tell. 

Of course we are somewhat bummed.  But since it wasn't all bad news, we will just forge forward.  Joe seems to have taken it in stride (he usually does better than me).  One other positive aspect, no more home infusions.  So I won't have to go off and have a hissy fit when the home infusion nurse comes in the room Monday...because she won't have any need to!  I can't speak for Joe but I think he is just really tired.  Tired of bad news.  Tired of not feeling well.  I know that I am tired.  Tired of many things!

Many, many thanks for the well wishes and words of concern.  Your prayers and words of encouragement are truly helping both of us.

Oops, I Did It Again!

I forgot to amend yesterday's post to include the fact that Joe DID come home last night. He did have to wait until after dinner was served at Duke so he did at least get one more meal out of them. They have put him on an antibiotic for 5 days so we shall see. He did run a little fever this afternoon but a couple of Tylenol took care of it within an hour.

He has an appointment with Dr. Zafar or Leigh Howard on Thursday morning. A sort of "follow up & get CT scan results" visit. Not thrilled with the wait but I know they prefer for his regular oncologist to give the results rather than the oncologist on duty at the hospital. Nevertheless, it's no fun waiting. But I should focus on the positive. Joe is home, feeling well and had a good day. I'll take that and run with it! We even had a rainbow over our house this evening.

Duke Hospital Visit #2 for the Week

Saturday night/Sunday morning around 12:30am, Joe woke me up from a very heavy dead sleep telling me he needed the quilt.  It took me a while to figure out what he was talking about as we had plenty of cover on the bed.  He was having chills and wanted the quilt that we bought in Fayetteville years ago.  I got up, got the quilt, put it on his side of the bed only because honestly it was not cold in the room and then went and got the thermometer.  I took his temp and it was 100.8 so he took 2 Tylenol (or generics actually).  I then went back to bed and to sleep.  I awakened around 6am when Joe's alarm clock went off for him to get up to get ready for church.  He then told me he was still not feeling well and wouldn't be able to go.  He then called Jay and told him.  I got up, got the themometer and took his temp again.  This time, 101.1.  Joe quietly says that he also took some Tylenol around 4:30-5am.  I fussed at him that that was too soon after taking it at 12:30am, but admittedly, he didn't know what time it was and thought it was earlier in the night.  He then said he would just wait to call the clinic on Monday to speak with Dr. Zafar or Leigh.  I then went in the bathroom, took my shower, came out, dressed and packed 2 small bags.  One with his underwear and comfortable sleep wear and one for me.  I then picked up my bag and told him I would be downstairs when he was ready, that we were not waiting until Monday and were going to Duke that morning.  He mumbled something incoherrent and I went on downstairs.  By 7:20am he was showered and changed and had put his toiletries in his bag and we were off.  We arrived at Duke around 7:45am and were in an exam room before 8am.  While in the emergency department he got fluids, had a full CT scan and had blood drawn for labs and cultures (again).  During the stay there, his temp peaked at one point at 102.1.  It was at that point that they said he was being admitted.  We were up in a room by 4pm and settled having finally eaten around 5pm.  By 6pm however, his chills returned and by 6:45pm his temp had risen from the almost normal at 4pm to 101.7.  At that point, he got some more Tylenol to help.  The rest of the night was uneventful.

The CT scan results did not show any reason for the fevers.  The results as far as tumor growth or spreading, we will have to wait on until we see or hear from Dr. Zafar or Leigh.  So far today he has run a low grade fever in the 99.4 range.  That isn't considered a fever in hospital terms.  After dinner tonight, unless he has another fever spike, they will send him home with antibiotics as a precautionary measure. 

He looks very weak but says other than fatique, he feels fine.  He ate a good breakfast and lunch and maybe will be able to squeeze one more meal out of Duke.  Only time will tell this evening.  The plan is for me to call before I leave work to find out if he's coming home tonight or if I should go by our house and get more overnight things and feed Dolly.  The fevers are a mystery.  One that everyone, even the nurses & doctors are worried about but can't pinpoint a cause.

Thanks for all the inquiries, prayers and outpouring of love.  Both of us greatly appreciate everything that our friends are doing for us.  You are the best!