Good-Bye 2010

Today we said good-bye to Duke for 2010.  Joe's last radiation treatment and oncology appointment for 2010 was this morning. As always, the radiation treatment was on time and we were out of there and heading up to the first floor of the Duke clinic by 7:45a.m.  After a miscue with the on-line appointment check-in was corrected, we landed in the right clinic promptly at 8am and Joe was called for blood work and vitals within 15 minutes.  To our surprise, the first person in the exam room today was Dr. Zafar, not Minoka his nurse or Leigh his nurse practioner. That was truly a first for us!  Joe's blood work results were already in and his bilirubin count was at 1.6.  How cool is that?  Still dropping even after chemo for 2 weeks.  Dr. Zafar advised that Joe should increase the number of chemo pills he should take to 3 every 12 hours (up until now he has been taking 2 pills every 12 hours) and told him to increase the number of Creon pills (those are the ones that he takes whenever he eats something- a synthesized enzyme mimicking those that are created naturally in the pancreas) from 2 at a time to 3 or possibly 4 if he is eating a large meal.  This should help the digestive process and hopefully help minimize his weight loss.  It was a very good appointment. Dr. Zafar seemed genuinely pleased with Joe's health and lack of serious reaction thus far to the radiation & chemo.  Joe has off tomorrow from radiation & chemo since the Radiation Oncology clinic is closed for the New Year holiday but will resume Monday morning at 7:30am.  As a side note, Joe was even able to get his flu-shot today since his bili count is so low!  It was a good appointment and we were out of there by 9a.m.  The best part of the day.....Hardee's Sausage Biscuits for breakfast on our way home!

and Good-Bye 2010

The Day We Ventured Outside

Monday morning brought delays to both Joe's radiation treatment and his chemo.  However, the chemo delay was of his own making...I'll explain the chemo later.  Last evening Joe called the Inclement Weather line at the Duke Radiology Clinic and learned that they would not be opening at 7am as usual and for all persons with appointments to wait to hear from the clinic before coming in for treatment due to the weekend snow.

So that is just what he did.  He received the call about 9am this morning and they wanted him to come in right then if possible.  Of course he could and he did.  He had to wait about 30 mins for his treatment to begin, but 1/2 hour is not a bad wait, all things considered.  However, the one thing he forgot was to take his morning chemo pills.  He did take the pills soon after returning home, around 11:30am.  Therein lies the problem.  The pills have to be taken 12 hours apart (12 hours is best, but they can be taken between 10-12 hours apart), 30 minutes after eating on days that he has radiation treatment.  What does this mean you ask....it means he is going to be up really late tonight and eating really late, thus most likely ending up with indigestion when he goes to bad.  Not a good thing!  Our solution is to shave a little off the 12 hours for the next 3 days until we get it back down to his usual 7am and 7pm.  How does one forget to take your chemo when it has been drilled into you over and over and over??????.....most likely due to Joe having some movie musical playing in his head and not paying attention (my theory, not proven, but most likely accurate). ****Joe has just informed me that I should say that the reason is because he wanted to make sure he was having the radiation treatment before taking the chemo pills.*** (That doesn't explain why the pills were not taken until 11:30am)  Not a catastrophe, but not the best scenario for the next couple of days.  Joe also had blood drawn today for more analysis, but just informed me that they didn't take enough this morning and will have to take more tomorrow.  He feels good, his energy is good and except for the occassional "cat-nap", goes about his daily normal routine.  Hopefully there won't be anymore treatment delays or pill miscues this week and the normal routine we have developed will resume very soon.

Christmas comes to Durham.....and both families too!

Preparing for the Lupton clan and the Holland clan for Christmas Day.  We had to get out an extra table for the 11 people that would be here for lunch.
Both families arrive around 11:30 and we got to work getting the food ready for the table.

Soon everyone had their plates full and were making short work of the ham, turkey and side dishes.

After the meal everyone was too full to think about any of the sweets, so we opted for opening gifts instead.

We had a great time laughing and oooooing and ahhhhing over the gifts.  When all was said and done, we had a great meal, with lots of good conversation and general Christmas merriment.  It was a lot of work to get ready, but in the end it was worth it and we had a wonderful time with our families on this special day.

Merry Christmas everyone!

Christmas Comes 2 Days Early

1.8

That is our early and HIGHLY desired Christmas present.  Today we had to be at the radiology center 15 minutes early for Celia to draw blood from Joe before his 7:30am radiation treatment.  The reason, since Joe's bilirubin level had risen over last weekend, there was the possibility that he would have to have his stint replaced today if the bilirubin level had risen even more.  On Monday his level was 2.6, but today, it was 1.8.  Below the magical 2.0 that we have waited for since November 18.  What this all means, no long day at Duke with Joe having to have the stint replacement procedure; he can eat and thus have his chemo treatment on schedule; he won't feel like crap for the next few days and we can have our Christmas as planned.  In other words, we can relax for the next few days!  A few tears and 15 minutes later we were at Hardee's getting our sausage biscuits and planning everything we need to get done today.   As a side note, Joe's white blood cell count is at 7.0, meaning the infection he had been dealing with last week is under control.  Now we clean the house, do grocery shopping, wrap gifts, watch the weather forecast and prepare for Christmas day which we will be spending with both our families here in Durham.

Thank you to everyone for all the good wishes and prayers.  Someone is listening.

Chemo Day has Arrived...Tomorrow

Updated at 2:45pm 12/20/10
It's currently 10:30am as I type this.  Seems like we have had a full day already.  We arrived at the Radiology center this morning at 7:22am and Joe went back for this treatment promptly at 7:30am.  Immediately following that, we were upstairs to the 1st floor (radiation is in the sub-basement) for an 8a.m appointment with the oncologist.  After blood work & vitals taken, we went back to an exam room to wait. First in was Dr. Zafar's nurse, Minoka.  Apparently, Dr. Zafar was the only doctor in clinic 1a today, so the wait for him after Minoka left was about 15 minutes.  When he arrived he told us that unfortunately Joe's bilirubin level has crept back up by .3, but he recommended starting chemo anyway.  He says it is not uncommon for the bilirubin level to creep up from time to time and that once the chemo begins it is very common for it to do so. However, this increase is a cause for some concern. So with a little trepidation, Joe agreed to go ahead and begin chemo on Tuesday.
He has been to the Duke Pharmacy to give them his insurance information and now we are heading back down to radiation to hopefully meet with Dr. Czito (we were supposed to meet with him right after radiation treatment, but the oncology appointment got in the way.) 
10:35am - We arrived in Radiology only to be audiologically assaulted by a strolling carol singing guitar player.  Bless her heart, she tried but everyone is not meant to sing in public.  So here we wait for Dr. Czito to see Joe for a follow up radiology appointment.
Whew...busy and we still have to be back up at the pharmacy around 12:30..Hopefully we can squeeze in some time to eat something...Joe is already on the prowl for some cookies and the volunteer ladies are letting us down....no cookies in radiology....what is this world coming to....  I suppose it is better to cram as much into one day as possible...can you say a long Duke day??????
10:50am...ok we are not the only ones in the waiting room that are disappointed by the lack of cookies...
11:00am...We go to the back exam room where we meet with Dr. Czito's nurse, Celia (LOVELY woman) and then with a visiting radiology resident and then Dr. Czito.  As with Dr. Zafar, he is somewhat concerned about the bilirubin increase.  He wants to have more bloodwork done when Joe is in on Thursday for radiation treatment and make sure that the bilirubin level has not increased even more.  If so, he did say that he may want to possibly have the stint replaced with a different one, that same day.  That definitely could throw a wrench into our Christmas plans, but if that is what is necessary, we are all for it.  We will just have to wait and see what the level is on Thursday morning.  But for now, we more forward.
Tomorrow morning Joe will begin his first chemo pills.

Christmas Music - any other type this time of the year?

With the help of Jill Boliek, the Chancel Choir of Pleasant Grove UMC which I conduct, was able to perform our special Christmas music for the congregation at both the 8:30 & 11:00 services. Last week while I was anxiously sitting in Duke Hospital Monday through Friday, I was wondering how I would be able to be involved in our music presentation. Luckily, the choir likes Jill and they really worked hard at Wednesday night's rehearsal and on Saturday morning. Jill & I decided that she would conduct from the piano the first 4 pieces with the choir standing behind the piano, then move to the steps in front of the piano with me conducting the final 3 pieces while seated. (Wasn't sure I could make it through them without tipping over!) Everything worked out well at both services. In fact, many of the congregation said it was one of our best presentations.

So then the next question would be if I would be able to do my annual Christmas Piano by Candlelight this evening. Jeff kept checking my temperature to make sure it wasn't up. I was able to get my music together this afternoon (was planning to practice last week but Duke's hospital rooms do not come with an electric piano!). We got there & saw a leaf blower right in front of the piano. Actually turned out to be a vacuum cleaner. The church was getting cleaned at 6:20 p.m. People were going to start arriving soon. Challie Sullivan (my official page turner since she was in elementary school) and I got the music in order. The Sullivan family basically ran the concert acting as ushers, running off extra programs as needed, working the lights, etc. The turnout certainly exceeded my expectations. It was a wonderful evening with everyone listening and appreciating my performance of 10 different piano arrangements. Of course, I had to end with Children Go Where I Send Thee/Go Tell it on the Mountain which was the favorite of a lot of the attendees. Challie was even able to sell a few more CDs (all money raised goes to the music fund).

I am now home and a little tired. About to go to bed because I've got a 7:30 radiation appointment, then meet with the radiologist while at the same time I'm supposed to check in with the oncologist. I anticipate that Jeff & I will be at Duke most of the morning. That Hardee's Sausage Biscuit is going to be a little late.

An aside: Jeff just asked me if I was writing War & Peace because I've been typing a LONG time.

Well, some have wondered if I ever post.................

PS Christmas Piano by Candlelight CDs are still available for purchase in the Pleasant Grove UMC Church Office or just let me or Jeff know & we'll tell you how you can get one!

Hospitals make my head numb

I do believe my head has gone numb from being at the hospital all week, and I was only there during the evening & overnight.  I can't imagine how Joe feels.  He went for radiation at 7:00am and I left for work.  Waiting to hear if today is the day he is sprung from the joint!
11:35am - Doctor was just in and Joe may get to come home today!!!!!!  The doc will consult with the rest of the team but it's looking good.  Also, the best news is that the latest blood tests show his bilirubin level at 2.1   That is awesome!  It looks like he can begin the chemo really soon.  We've been waiting since November 18th for them to get down below 2 and it looks like by Monday that should be the case. I am so psyched up!!!!!!!!!
4:00pm - HE'S HOME!!!!

3rd Night the Charm?

Sitting here at 5:45am watching the snow come down at Duke Hospital. 



Joe had a good night last night with fewer interruptions of his sleep.  We did go to sleep earlier however, 9:30pm, so that helped.   The snow is coming down really hard right now and just heard that DPS has cancelled classes today so Joe is busy texting Jill to make sure she knows so she can stay in bed!  No word yet of course as to whether or not Joe will be discharged today. 



Just getting him ready for radiology to arrive at 7am for his treatment.  Hopefully we will know something soon after shift change. 
6:50am - They came up from radiology for Joe's treatment and he left about 7am.  Now I'm just watching the news/weather and listening to the ice hitting the window.

View outside Joe's window of the atrium

Hoping our overnight crew (Kim & Lucie) are very careful on their way home this morning.  Take it slow ladies. There is a great group of nurses and staff here who have been wondeful to Joe. Thanks to Donna, Mark, Kim, Helen, Heather, Barb & Lucie - you have been great.  I've got my fingers crossed that today will be the day he comes home.
10:30am - Well apparently the whole "crossing fingers" thing is not what it's cracked up to be!  Joe is staying another night. The doctors (2 of 'em) are just not comfortable with sending him home since his fever has only been holding steady for a little over 12 hours.  However, Joe feels good and we went for a stroll around the 9th floor three times after the doctors left.  Hopefully only one more night of recliner sleeping.  On the positive side, we won't have to worry about the roads in the morning and getting him to his 7:30am radiation treatment!  Might as well look at the glass as being half full.

2nd NIght update

It's 5:45am on Wednesday morning.  Joe has had a more restful night than the previous night with fewer visits from staff. Only 2 that I am aware of, vitals @ 2:45am and blood drawn @ 4:45am.  He is still running a fever as of the 2:45am vitals, 101+.  The nurse came in right after the hematologist and hung a new bag of antibiotics and fluids for the IV so I'm hopeful that the new batch of "goodies" will help bring his temp down. It's been relatively quiet up here tonight. I didn't hear a single helicopter (the landing pad is right outside his window) unlike the previous night when 3 landed/took off.  Brrrrrrrr...it's cold! I'll update as soon as I know if he is going to be discharged or not.
7:00a.m. - They arrived early to take Joe to radiology for his treatment.  He bundled up (they have to go outside to get him there - currently the wind chill says 8 degrees) and left in the wheel chair about 7:10am. When they took his temp it was down to 98.2.  The nurses are going over the charts for the shift change.  Brrrrrr...did I mention it's cold?
9:25am - Joe will not be coming home today. They are adding a second antibiotic in hopes of getting his temp to level out.  Possibly he will come home tomorrow after his 7:30am radiation treatment.  Got my fingers crossed!

First Night at Duke & the Next Day

Joe ate well last night. Unfortunately, it didn't stay with him long.  He did however, get some nausea meds around 9:30pm after the doctor was finished examining him.  After Bill & Sandy left, he soon drifted off to sleep and eventually I put the computer up and tried to find the most comfortable position on the recliner. No easy task...but enough about me!  He was awakened every hour until 4am for either meds, vitals, x-rays or blood.  He'll need to come home just to get some solid sleep.  They are supposed to do either a CT scan or MRI this morning, but don't know what time.
10:45am - Joe returned from getting his scans and has decided to try and get some sleep before they bring lunch.  Still having stomach pain however, but the nausea is not as bad.
1:00pm - Came by during lunch and just my luck, he was getting his radiation treatment. 
6:00pm - I'm back at the hospital.  Joe now has his antibiotic and is feeling better.

But I don't think he's feeling better because of the antiobiotics, but rather because of the strawberry-banana smoothie from McDonald's that I brought him.
They are saying that there is a possibility that he may go home tomorrow morning, but we won't know for sure until later.  Having him back home would be the Best Thing Ever!



Winter Vacation at Duke

Those were the words out of Joe's mouth about 5 minutes ago as we wait for a room to become available. Today he started experiencing stomach pain, fever & nausea.  We called over to both radiology (he had his radiation treatment this morning) and to oncology and they asked for him to come in so they could do some blood work.  We arrived around 2pm, did the blood work and found out his white blood cell count is extremely elevated suggesting some type of infection.  They are admitting him to Duke for 48-72 hours to observe and get some antiobiotics into him.  Right now we are sitting in an exam room in radiology waiting for a room assignment...fun, fun.   Will post more as soon as we know something else.

9:00pm   We got Joe in the room around 6pm (room 9328 Duke North), he was quickly served his dinner and put in the bed.  I went home to retrieve all his necessities and returned.  By then Bill & Sandy were up in the room keeping him company.  His nausea is quite extreme at this point.  His nurse, Mark, is awaiting the doctor to start an IV so he can get some fluids and nausea meds in him.  Other than that he is very tired, so I'm sure he will be asleep before long.  I've camped out my space in the corner.   ***Funny Thing***  His bed kept going up and down, all by itself, he was gettting so worried that it would continue all night until I discovered that since he is so tall, his feet were hanging over the end of the bed on the controls.  If he will just keep his feet under the cover, the ghost in the machine should leave the bed alone!  Well this will be all for me tonight.  Thank you to everyone for all your warm wishes and prayers. 

Ain't He Purty

That's about all I can say.  Just look at him all dressed in his tux for the TGMC concert Saturday night.

Anyone that didn't make it to one of their shows missed a beautiful Christmas evening of song & piano.

Then tonight we went to see "Young Frankenstein" at DPAC and Joe had a great time (I can tell because of the number of belly laughs that I heard come from him).  Tomorrow morning he starts his 2nd week of radiation but this week his appointments will be at 7:30am....if it gets any earlier he might as well just sleep there!  

It's My Pancreas and I'll Cry if I Want To!

Apologies to Leslie Gore but I had to use that title.

Today was the end of Joe's first week of radiation treatment and he made it through it all with flying colors. His original treatment time of 1pm only happened once this week, Monday.  On that day, they changed the Tuesday time to 11am and the rest of the week to 8:15am.  Next week he gets 7:30am, lucky him!
He says the radiation treatment isn't bad at all, very quick, in & out.  He did experience some nausea and upset stomach on Wednesday, but then again, he didn't take his nausea meds like he was supposed to, so I guess now he knows.

Joe had a quick appointment yesterday morning with the oncologist's nurse practioner, Leigh Howard for some quick blood work.  The results of that showed that his bilirubin count was down to 4.8, or a decrease of 1/2 point since Monday.  It would have been very nice for it to have fallen more, but beggars can't be choosers as they say.  The bilirubin level needs to be under 2 for his chemo to begin.  He will have another blood test next Thursday, Dec. 16.

Yesterday evening, Joe's brother and sister-in-law, Bill & Sandy arrived for a week stay and we had a great evening last night catching up over dinner and then at home afterwards. This afternoon, the rest of Joe's family will be coming into town for an overnight visit as well.

Joe's energy level continues to be good and every day, his skin color is better.  Now if we can only get him to remember to take his meds when he eats.  I've put Bill & Sandy on patrol for when I'm not there to make sure he behaves himself and does what he is supposed to do.

Tomorrow evening, the TGMC will have their 2nd of 2 concerts for the Holiday Season. This time it will be at the Universal Unitarian Fellowship of Raleigh.  If anyone is interested and didn't get to see last weekend's concert in Durham, make plans to attend.  The men's voices blend particularly welll this season and as always, Joe's piano accompaniment is perfect!

The Day Joe's Treatments Start

Well the day has arrived.  Today Joe has his first radiation treatment.  But first, we have to be at Duke at 9am for blood work followed by a 10am appointment with his oncologist, Dr. Zafar.  Hopefully, once the blood work results are in, we will know when his chemo will start and the treatment to get rid of this thing will be in full swing.  Joe's energy level remains very good and although the change in his appearance is not as noticeable in the last few days as it was in the first 10 days after the stint was put in, he does continue to become less and less yellow.

It's a cold day to start this but Joe is still so psyched from the weekend snow.  I couldn't have asked for a better gift for him if I could have ordered something up myself.  Those that know Joe well, know he LOVES snow!  He was like a giddy little kid on Saturday, running around texting and calling everyone he knows telling them it was snowing.  

Joe is going to ride with me to the office this morning so I can open up and run my morning reports and then we will be on our way to Duke.  Hopefully they will have some cookies for him to enjoy this morning!

We arrived at Duke right on time and checked in at the kiosk at 8:58am, took seats facing the TV and started to wait.  It's now 9:25am and we are still wating.
9:28am: Fill out patient survey
9:40am: Joe was called for blood work
9:50am: Joe was called for vitals
10:15am: Called back to exam room for appointment.  Dr. Zafar's nurse, Minokah came in first and went over where we were in the process and checked on any questions we might have...and we had several. She stayed in with us for about 30 minutes and then left.
11:10am: Leigh, the NP, came in for the appointment, went over medications and answered some more questions.  She let us know about the time line that we can expect: 5 1/2 weeks of the radiation/chemo, followed by approximately 4 weeks of down time for evaluation for surgery.  Then hopefully surgery, followed by a surgical recuperation time of 2-6 weeks.  After all that fun, then 4 months of chemo again.  All in all she said we can expect around a year before Joe is at his "new normal".
We did learn from today's blood work that Joe's bilirubin count is now at 5.3.  Still high, but a HUGE change from 11/22 when it was still at 23.6.  He won't begin chemo until it is below 2 so we have scheduled a quick blood work appointment for this Thursday to see where he is at.
After leaving the appointment we had a quick lunch at Chick-fil-A in the food court and next we are off to his first radiation appointment. Fun Fun :)

We arrived at the Radiation Oncology Clinic a little early and after Joe dropped off his green card at the desk, took a seat in the waiting room.  At 12:58, 2 minutes early, Ed the "technician" came out and called Joe's name and he left to go back.  So now I wait.

1:29pm- He's out and we are OUT OF HERE and he says he is feeling fine.
From now on for the next 5 1/2 weeks he will be here for his radiation treatment. On Thursday Joe also has an appointment for more blood work to make sure his bilirubin levels are continuing to drop. Hopefully they will be close enough at that point to go ahead and start the chemo as well.   For now, he gets dropped off at home and I'm back to work!

Trip 5 - Our Radiation Oncology Tour

Joe's appointment today was for 2pm and we arrived a few minutes early even after running into and chatting a couple of moments with a close friend, Mike Heath, on the cross over bridge from the parking deck.  We only had about a 5 minute wait before one of the therapists came and got Joe to do some X-Rays.   Over at the waiting room for patients awaiting their treatments, it was hopping! As you can see by the photo below however, it wasn't a busy day in the Radiation Oncology waiting room.

Just me (Jeff) and the husband of a brain tumor patient at this point in  the waiting room.  Interesting how you find out information on people you barely know.  Just off the waiting room is a lovely patio area if folks want some fresh air.

Phone photos really don't do it justice.  The exterior entrance & patient parking lot where we will be coming from here on for radiation treatments is just past that table.  **An FYI update:  Joe's renal scans came back today (they were taken on Nov. 22) and everything looks great with them.  Both kidneys functioning normally so there should not be a problem with one having to perform a little harder should there be any damage from the radiation on the kidney that is closest to the tumor.**

Joe came back to the waiting room with the therapist around 2:50pm and he took us on the tour of the facility where his treatments will take place.  They have a very simple yet effective routine for patients.  Parking is very close to the door, check in is just steps from the entrance and checking in is as easy as dropping a green card (Joe will be on the Green Machine) in the slot marked "Green"- just like Alphaba in "Wicked".  It really couldn't be more simple.  We were done and out of the hospital by 3:15pm and I dropped Joe off at home and returned to work.

Monday, Dec. 6, we have an oncology appointment at 9am and Joe's 1st radiation treatment at 1pm.

Radiology "Dry Run"- Trip 5 to Duke

This Friday at 2pm, Joe has his "dry run" or walk-thru for his radiation treatments at Duke.  His first radiation treatment is set for Monday, Dec. 6th.  At the dry run, we will get our parking pass, be shown where to park, get a walk-thru of the clinic and be shown what to expect and where to go for his upcoming treatments.  We are told the walk-thru will take about 1 hour, approximately twice the amount of time the actual treatments will take come Monday.

Besides his first radiation treatment on Monday, Joe also has an appointment with his oncologist, Dr. Zafar.  As of today, his energy level is very good, his color is getting closer and closer to normal, the itching is completely gone and most other symptoms that have popped up in the last 1 1/2 months have either lessened or gone away.

Thanks to everyone who has been so supportive, especially our family, friends, our church family at Pleasant Grove United Methodist Church and Jeff's co-workers at The Home Team.