Friday, September 28, 2012

Joe is home from the hospital....

....and most of you probably didn't even know he was in there. Other than those that are Facebook friends with one of us you would not have heard. The previous post can explain. However, he is home, I just unpacked his bag and he is relaxing on the couch in the family room talking to his mother. More specifically, listening to his mother talk.

But his escape from Duke was not a smooth one thanks to the home infusion folks. They came this afternoon to remove the now infamous home infusion ball but the infusion nurse left the needle in the port. So they are preparing to discharge him and notice the needle still in there. Well they won't release him with a needle sticking out of him. So then the question is, do they contact the home infusion people again or does a nurse on the floor remove it? After discussion they just decided to go for it and one of Joe's nurses removed the needle. Then Joe finally was able to be discharged.

He is feeling okay, just a little tired from laying around in the Emergency Dept. and his hospital room. A shower, dinner and his own bed will make all the difference. Thank you for all the prayers and good wishes. They worked. He's home!

Pancreatic Cancer: The gift that keeps on giving

Well after being out of Duke Hospital for one month, to the day, we had to return to the Duke Emergency Department late yesterday afternoon after Joe started running a fever again. We only had a 20 minute wait in the waiting room before being called to the triage room and then were taken back to an exam room.  They are really starting to catch on that someone with a suppressed immune system by the chemotherapy should not be sitting in the waiting room with people coughing, sneezing and blowing their noses constantly.
Joe was seen immediately by the nurse and withing 5 minutes the doctor and a med student were in to assess his condition.

This started right after lunch.  Joe had driven over here to Chapel Hill to meet me for lunch and I could tell sitting there that he did not feel well.  He said he was just tired, so we cut my lunch time short and he went on back home.  At 2:30 he called to tell me he was running a 100.7 fever and had called the Cancer Center triage line and was waiting for a call back.   At 3:30 he called again and told me that they had said to go on to the Emergency Department.  So I left work, went home, grabbed the required overnight bag just in case and off to Duke we went.  I only managed to forget 2 things this time:  my cell phone and my medications.  Better mine than his, right?

Since he is still having the chemo home infusion running, they could not start any antibiotics although his temp was down when we checked in at Duke ED, but most likely due to the Tylenol he had taken.  They took blood for labs and for cultures.  It took 2 nurses and 5 sticks of a needle to get the blood flowing.  He has rolling veins.  They hung a bag of fluids and he layed in the bed and we waited.  We were treated to 2 turkey sandwiches each and each some Jello pudding since we had been there through dinner time.  That was a first.  Our only contact with the outside world other than Joe's dying cell phone was through Facebook so that kept me sane while we waiting and Joe napped.

As you can see below, there was a great deal of support on FB last night and that is just a very small sampling.  Joe just messaged me that his most current temperature was normal so I have my fingers crossed that I get a call very soon to go pick him up!


Wednesday, September 26, 2012

To Clamp or Not To Clamp

This is a copy of a Facebook post from Joe this afternoon.

"To clamp or not to clamp. That is the question! No wonder I've been feeling better: the little chemo pressurized ball that I take home for 46 hours was never unclamped! The Duke Infusion nurse came to take out my needle, etc. from the port and discovered that the ball was totally full. So, 46 hours more of wearing my little pouch and two more days of bird baths! Got those anti-nausea drugs going. Next time Jeff and I will double check everything VERY carefully before we leave the Cancer Center."


The little white clamp in the center of the photo is the culprit.  Of course the entire infusion ball, clamp and prescription paper goes inside Joe's shoulder/hip pouch he has to carry around for the 46 hours so you don't really see the clamp unless you take it all out of the pouch, which we almost never do.  However, I did take it out last night and we commented that it didn't look any smaller but he has had two different types of containers for the chemo so we just figured this was yet another kind.  Silly us.  We trusted the Home Health Infusion nurse to know what she was doing.  We won't make that mistake again.  

Of course it is times like these that mine and Joe's different temperaments really become apparent.  While he is of course annoyed and irritated that he has to lug around the infusion ball for another 46 hours, I am pissed off.  I've already gotten information on how to file a formal complaint against the offending nurse and will follow though with it.  I probably wouldn't have been as mad if not for a comment she made on Monday afternoon when Joe finished his 2 treatments at Duke and she came in to hook up the 5-Flu to his port.  "I sat here all afternoon with nothing to do and now all of a sudden all 5 need to be hooked up."  Even though she was smiling when she said it, I wanted to respond with something like I'm sure the cancer patients would prefer not to be up here getting treatment all day and inconveniencing you.  But I didn't.  After 8 1/2 hours, I just wanted to get Joe home.   Let me be perfectly clear.  I am NOT talking about one of the nurses at the Duke Cancer Center 4th floor infusion center.  Holly, Brenda, Jason (one of Joe's former Stedman Jr. High students) and all the others we have had take care of him for his infusions at the DCC are wonderful.  I am talking about a Duke Home Health Infusion nurse.  Up until now, all of them had been equally great.  This is the first time we have seen this particular nurse and if I have it my way, the last time!

I can handle lots of things, but Joe not getting proper health treatment is not one of them.  It's been 5 hours since I found out about this and I am still fuming!  Where is a punching bag when you need one?  The whole plan for switching to Monday treatments was that Joe would finish up the take home infusion on Wednesday, be able to have choir practice without a bag hanging around his neck,  and hopefully have the associated symptoms behind him well in advance of Sunday for his 2 church services.  Now he is in the choir room (as I type) having choir practice with the bag over his shoulder and the prospect of two extra days of nausea and other side effects to look forward to.  Forget the punching bag.  Anyone know where I can find a guillotine?  I'm ready for a head to roll!

Typing this really is my therapy.  Sitting in the dark in the church office at Joe's desk, typing away on the iPad while crying at the same time. (That's why the lights are off.  Not as embarrassing that way.)

Thanks for listening.

Monday, September 24, 2012

Never Count on Things Running on Time

The tone for Joe's chemo treatment was set relatively early today. I dropped him off in front of the Duke Cancer Center at 7:03 am this morning for his 7:20 labs appointment and headed off to my office to get my Monday morning work done, arriving by 7:15 am. Joe texted me at 7:28 that he was in the food court getting his Subway breakfast (still not patronizing Chick-fil-a). At 7:52 am he was up on the 3rd floor and checked in for his doctor's appointment. However, apparently Dr. Zafar had a meeting and Leigh was busy as well so his 8:30 am appointment turned into more of a 9:15 am appointment. When that happens, there is a cascade effect. 9:30 am chemo turned into a 10:45 chemo and the chemicals didn't start flowing until around 11:00 am. So at this point if the rest of the day goes as normal, we should be out of here around 4:00 pm. Still better than the post 5pm of last time.
Today's nurse, Holly, has been on top of things and we haven't had to listen to beeping long in between chemo changes.  Joe, as you can see doesn't seem to phased by anything yet as he is laying back watching The View.  All 6 bags of chemicals are hung and waiting for their turn.

The biggest decision today is what to have for lunch. And the decision was made at 12:30.....chicken fingers and fries. Yes, I know, that's my norm but Joe usually chooses something else, but today he wanted the same. So off to the Atrium Cafe I went. It's no short walk either, so at least I got some exercise in today! Neither one of us however could finish the chicken so we have a good snack for later tonight, or whenever. Don't you just love these interesting details? Just goes to show how boring it can get up here.

Right now I'm counting the drips of the Oxaliplatin. He has a nice rhythm....drip,drip,drip,
pause...drip,drip,drip, pause, drip,drip,drip, pause. The Irinotecan had more of a slow drip, pause,
drip, pause, drip, pause cadence. Not nearly as interesting. Maybe I'm loosing my mind? 2 1/2 hours to go!  The 5-Flu infusion ball has already been delivered so maybe that will get hooked up quickly after the Magnesium is through (that comes after the Oxaliplatin finishes).
Now that Joe's all fed he's ready to watch last nights "Treme" episode on HBO Go.  I insisted on the headphones because he had the volume at max,  which interfered with my Netflix viewing.  Not sure why I keep him company when he sits with his headphones on ignoring me.  I have to wave my arms to get his attention.

Joe and I have determined that we could live in a room the size of this treatment room since it has an attached bathroom.  The bath is huge so there would be plenty of room to add a shower.  There is already a sink, so we would just need a microwave and a two burner hot plate.  The counter by the
sink doesn't go all the way to the ground so we could have a refrigerator put under there.  Throw in a 
Murphy bed and a couple of more comfortable chairs and we would be all set.
Just think of the savings on parking and travel time to and from Duke!  As you can see, there is room to spare even with the hospital bed in the room and those things are huge!  I might have to repaint though and definitely get rid of the fluorescent lighting.

Joe finished up his treatment at 3:45pm and we made the trek to the parking deck.  That means that the Duke Home Health will be at the house on Wednesday at 1:45pm to disconnect the 5-flu infusion bottle and then Joe will have 11 days free before it starts again.  However, we were not home 5 minutes before the nausea took its toll and Joe fled for the bathroom (of course he had just taken a nausea pill 2 minutes earlier.  Isn't that always the case???).  After that trip he is now settling down on the couch not feeling very well, obviously.  On a positive note, at least it waited until we got home instead of in the car.  It's stacking up to be a long evening!

Thank you for all the messages of concern and support.  They are all greatly appreciated and needed.

P.S. I've finally reached my limit of what I can handle. I've had my hands in Joe's bloody belly when his wound vac failed, I've watched as staples were ripped from his stomach while thick wads of gauze sopped up infectious hematomas, I've watched him heave over the toilet numerous times...but tonight, he is coughing up big ol goobers and it is totaling grossing me out! To make matters worse, he's putting the tissues in his puke pan right next to me. GROSS!

Friday, September 21, 2012

Revenge is Sweet

Yes I know, we have been pretty silent on here for the past week.  There are 2 reasons: (1) there really hasn't been any health updates with Joe.  He has felt pretty good with occasional periods of nausea along with fatigue.  Neither however has kept him from going about his regular activities.  (2) "Revenge"  the tv show.  We didn't watch the first season last year but lo and behold, season one is on Netflix streaming.  Pretty much every waking hour when not working or sleeping has gone into watching the entire season.  Believe me, it is addictive!  There isn't a single character on the show with any redeeming qualities and that's what makes it so good.  You can't help but love to hate them all.
Friday and Saturday Joe will be attending the NCACDA fall conference in Greensboro, on a limited basis (its a choral directors thing).  Rather than two full days, he will be doing two partial days: lunch time to 5 on Friday and morning to lunch on Saturday.  I'm not extremely pleased, but I know it's important to him to go see choral friends from the past 35 years as well as attend some of the sessions like he has always done.  Therefore I haven't put up too much of a protest.  Of course I worry over him being out of town without me (I know, it's only an hour away...not exactly a third world country).  The high ragweed count in the air has given me a certain nasal quality & sneezing, and allergy meds make sleeping quite easy (after a couple of episodes of "Revenge" of course) so Im sure I will be snoozing away before he gets home on Friday and when he leaves on Saturday.
He resumes his chemo schedule at the Duke Cancer Center on Monday.  This time it is an early one with labs at 7:20am, doctors appointment at 8:20am and chemo infusion to begin at 9:30am.  I have my fingers crossed that things run close to on time so he doesnt have to be there after 5pm like the last time.  If he were to manage to get in there by 9:30am, he should be out around 2:30ish.  But neither one of us is holding our breath on that one! 
Thank you as always to everyone for your prayers and expressions of concern and support.  We are truly blessed to be surrounded by so many loving and caring friends.

Wednesday, September 12, 2012

The Do's and Don'ts of Chemical Aids ( i.e. Medications)

This week we, and by that I mean me and Joe, learned a valuable lesson on how to take prescribed medications.  First let's go back to give a little history.

The first chemo that Joe was on was Zeloda.  This came in pill form and other than two anti-nausea medications, heretofore referred to as the Cadillac and the Ford, he required no other medications (basically).  After the surgery he began the liquid, IV infused chemo, Gemcitabine and continued to take the Cadillac and Ford as needed.  When he went to Duke for the infusion, they also gave him various fluids including steroids to help combat the negative side effects of the chemotherapy.  After the surgery he also was given a prescription for pain medication (I won't mention the particular name but let's just say it works).  After the first couple of weeks of this chemo regimen it became obvious that it was difficult to sleep for the first few nights after the infusion due to the steroids.  Because of that, he was given a prescription for a sleep aid - Ambien.  At first he took just one.  That didn't work so he would take a second.  Then usually a third along with a couple of Benadryl and often some "Sleepy Time" tea.  This became the norm for chemo night.  The next night he would take just two Ambien and then the next night just one.  Since his chemo at that time was on Thursday mornings, by Sunday night, he needed no sleep aids at all.

Like I said this became the routine.  Joe had originally resisted the idea of the Ambien because as he put it, "he didn't want to get up in the middle of the night and eat a whole chicken", referring to reports when the drug first came out of people sleep walking, eating and driving after taking Ambien. Why he thought there might be a whole chicken in the house still confuses me.  Needless to say he got over that quick enough.  So that has been the routine for over a year.  Back in August however, after discovering the tumor had grown and some lesions had appeared on his liver, he was switched to a more aggressive chemotherapy regimen.  He only had the one infusion before he was hospitalized a couple of weeks ago for a bacterial infection.  This past Monday, he had the second infusion.  Apparently Joe felt there was no need to alter the way he typically treated the night of his infusion because Monday night, very soon after throwing up (I think that is an important element of the story - empty stomach- also loosing the Cadillac he had just taken) he took his three Ambien.  This was around 9:00 - 9:15 pm.  Within 15 minutes, just after brushing his teeth and sitting on the side of the bed, he began to get a little "loopy".  By that I mean he was barely able to sit up and was talking nonsensical stuff.  I however, got him in bed.  One key component to this story is that Joe is hooked up to a "take home" chemo infuser.  He has a tube running out of his chest and into a small bottle filled with 5-flu chemotherapy for 46 hours.
 The bottle fits snugly into a little bag that resembles a small purse.  He can either wear the bag by hanging the strap around his shoulder or around his waist.  He ops for the shoulder,  however when he is in bed, it hangs from the headboard of the bed.  So here is Joe laying in bed with his little bag on the headboard.  This is when the fun really cranked up. (that sentence is dripping with sarcasm). Joe starts having conversations.  With who I'm not sure.  Periodically he however will ask me questions.  What was going on in his head? I don't know, but there was some crazy crap coming out of his mouth! He was talking about Lady Bird Johnson's hats, Katie Couric & Barbra Streisand, whether or not there were "ready made" pizzas at Papa Johns and the need for us to measure the pillows at Duke.  There was a lot of other stuff thrown in there that I could not understand too.  Throughout this period, Joe also decided to get out of bed to go to the bathroom. Without taking the chemo bag off the headboard.  I'm yelling at him to stop and grabbing him by the arm to prevent him from pulling the IV out of his port (if there is a chemo spill we literally have to call 911 and get a haz mat crew out to the house).  Of course once he does get in the bathroom, he decides he doesnt have to go after all so back to the bed we go...for more chatter.  By now it's going on midnight and I'm starting to get a tad bit on the scared side.  Just before 1a.m. Joe decided he wanted to get up again but by then I had a firm death grip on his arm and would not let him up.  He then nodded off for a while and somewhere just before 2a.m. woke up and asked me what I was doing awake.  I told him I was just getting ready to go to sleep and for him to roll on over and go back to sleep.  The tone in his voice was that of Joe, not the crazy person who had laid beside me for the last 5 hours.  Why did the Ambien effect him differently this time?  Who knows.  Possibly he isn't getting the same amount of steroids or perhaps different steroids.  Regardless, he will NOT be taking three at a time again.  I can laugh now, but Monday night I was not amused.

Another lesson learned this week, don't take his pain meds on an empty stomach like he did on Sunday.  You should not take one pill, let alone six - although spread out all day.  He probably would have been much better off to have taken one pain pill and eaten something than to have gone straight to bed after church and taken his prescribed dosage throughout the afternoon and evening.  At the very least he wouldn't have been so sick to his stomach.  But now he has a new pain med prescription that hopefully will be more effective if his back pain returns.  But even then, he will eat too!


3 AMBIEN = CRAZY PERSON
6 PAIN MEDS - FOOD = NAUSEOUS PERSON

Monday, September 10, 2012

Chemo is Complete....at least the part at Duke!

After yesterday's bad afternoon and evening, I really wasn't looking forward to today's chemo for fear he would feel even worse. I had a doctor's appointment myself this morning but rescheduled because I wanted to be sure and make it to Joe's. I dropped him off at the Duke Cancer Center at 7:25am for him to get his lab work and I went and opened my office. Joe called me around 8:10am and said he had seen Leigh Howard in the cafe and possibly he would get into see her before his appointment time. Sooooo as soon as the other staff was at the office, I skeedaddled off to the DCC. I got there just after 9am and found Joe in the waiting room. We waited and did manage to get in to see her before his scheduled appointment time.  She of course was concerned about the pain that Joe has been experiencing and with the nausea and vomiting. After discussing many options and possibilities, we did come to one conclusion. Him taking his pain meds on an empty stomach contributed greatly to his nausea! Duh!!

Today his back pain has decreased significantly. Why? Who knows. It just has.

He didn't sleep much at all last night so he was very tired today during his chemo infusion. Right after I went and got us lunch, he was out like a light! Snoozing and snoring away.
And considering we didn't leave Duke until 5:20 pm, he had plenty of nap time.  Of course he has the 5-flu take home chemo infusion that he'll carry around until 3pm on Wednesday but he is already a different man.  Instead of laying in bed, moaning and groaning in pain; after going through 5+ hours of chemo which typically drains most people; Joe, although still sleepy, has eaten a good dinner (thank you Hope!) and is relaxing and feeling good while reading the paper.

What a difference a day makes.  After 12:30 yesterday afternoon, Joe didn't even sit up the rest of the day and now he is all smiles....with his little black chemo purse.  He's already wanting to go to bed early so we will probably head upstairs by 8:30.

I want to really say just how much we both appreciate all the phone calls, messages and emails yesterday expressing concern for Joe and asking to help in any way.  We love all of you and are so appreciative of the support that we receive from our friends.  I wish I could hug each of you!

Chemo day is Here

Joe had a terrible night last night. The back pain continued and he was very restless, not getting much sleep. I'm sure his blood sugar will be high this morning. I did finally get him to eat part of a lightly toasted bagel around 8:30pm. His nausea continued throughout the night and he did get up around 2am to throw up. After that he said the nausea did subside some, but the pain continued. His labs are set for 8:30 this morning and doctor appointment at 9:40 followed by chemo at Duke. I had planned a doctors appointment of my own this morning but have canceled so I will be there for his doctor appointment. I'm just a little obsessive about making sure he tells all that has gone on this weekend.

Meredith Snider sent Joe this photo from yesterday's service, taken during the "special presentation". I love the look on his face. You would never know he was in severe pain when this was taken. He looks incredibly handsome, peaceful and happy.

Sunday, September 9, 2012

PGUMC Joins in the Fight Against Pancreatic Cancer in Support of Joe

Today at Pleasant Grove United Methodist Church, Jay had a special presentation. Unbeknownst to Joe, the church had purchased several hundred "Fight Pancreatic Cancer" purple wristbands. As people entered the sanctuary this morning, they were each given a wristband. From Joe's vantage point at the organ, he could not see what was going on. After the lectionary reading, Jay stepped up and commenced to speak about how Joe had served the church for 17 years and was fighting pancreatic cancer. He then asked everyone to stand and raise their arms with their wristbands high as a show of support and respect for Joe. There were more than a few tears shed by Joe, me, choir members, and other members of the congregation. It was a beautiful reminder of just how loved Joe is at our church and just how supportive they have been. We can never fully express how much the people of PGUMC mean to us and how grateful we are for each of them.
The choir along with Joe raise their hands high in support after the service this morning.
The congregation showed a unified spirit of support during the 11:00am service.  Each with a Fight Pancreatic Cancer wristband on and arms held high.
The Chancel Choir after this morning's service.
Joe and I at the alter this morning.

It was a wonderful morning.  After church however, Joe's back pain has increased significantly.  He has been in bed since we got home and has had to take his pain meds twice.  He is also dealing with severe nausea.  We had dinner plans with a dear friend this evening but have had to cancel.  My "danger Will Robinson" signals are going off in my head.  I've used the massager on his back but it doesn't seem to help and he is truly feeling miserable (his words).

Thank you to everyone for their prayers and show of support and love.  You are a main reason we are getting through this.

Friday, September 7, 2012

The End of Antibiotics

Today after 12 days of having home antibiotic infusions, they came to an end. Joe in real trooper style gave himself the infusions every single day. Not once did he complain. However he has been complaining of back pain. His back has been bothering him ever since he got home from Duke Hospital. I'm sure all that laying around in a bed for a week didn't help but we were hopeful that it would have resolved itself by now. It's a good thing we keep Tylenol around. The only other issue is that Joe tires easily of an evening. But if he is a good boy during the day and doesn't over do it, he manages to make it through okay.

Joe resumes chemo on Monday morning. After labs and the doctors appointment, chemo is scheduled for 11:15 a.m. Chemo takes about 5 hours, so we pretty much will be there all day. We'll both have to have our iPads charged to make it through the entire day.

For now, Joe is just being plain silly. Can't imagine how he got bacteria in his system when he goes around licking remote controls!

Saturday, September 1, 2012

Post Hospital Week

The weekend is here and Joe has been out of the hospital since Monday afternoon. He has felt pretty good all week except for tiring easily. All normal activities have returned.  He was able to have choir practice Wednesday night, out to dinner with his visiting cousin Steve on Thursday, and then last night a group of us took our friend Artie out to dinner for his birthday.  The original plan had been for the previous weekend, but Joe's hospital visit made that impossible.  They were all kind enough to delay the celebration a week so we could attend last night at Parizade.  Thanks Mike for putting that together.  We had a great time talking and laughing.  Laughter is the best medicine.

(Jeff Whicker, me, Joe, Artie Cline, Tracy Morris & Mike Heath taking the photo)

Joe continues to take his antibiotic infusion once a day.  He has gotten the whole procedure down to a science.  (see previous post for procedure). I still think the little pumps look like a baby's bottle.  The containers fill up a shelf in our refrigerator.  If Joe could just remember to take one out of a morning to un-chill!


Today, I get to help.  How exciting is that?  But speaking of exciting, yesterday will go down as a special date on the calendar.  Yesterday, Jesus was in Chapel Hill.   Who knew he would be making a special appearance?  Now I'm not saying that I don't believe that Jesus can't be found in our hearts and minds, even those of people who live in Chapel Hill (or work there like I do).  But walking down the street carrying a cross appearing to be heading for Trader Joes or another establishment at Eastgate Shopping Center is quite unusual.  I respect the concept, but have to admit to being a little confused.  Also, Jesus apparently has acquired some modern technology, as he has attached a wheel to the end of his cross to aid in his journey.  I am not making fun, just curious as to why in Chapel Hill at this particular time.  Perhaps Holden Thorp has been praying for some assistance?


Tomorrow we will be back at PGUMC bright and early.  Looking forward to it.  Haven't had a hug from Evelyn in a couple of weeks now and I am going through withdrawal.  Thank you to everyone who has reached out to us the last 2 weeks.  Either by phone, in person, email, text, or visits to this site.  We received thousands of views last week on the site and numerous comments and emails as a result.  There was love in the air each time someone took the time to read what was going on with Joe and in our lives.  Thank you hardly seems adequate. 

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 ...