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.

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!

'twas the night before......

...CT Scan results and there were lots of whispers, loud talking, television playing, typing and anything to detract from the elephant in the room--the results.  Joe had his labs and the CT scan on Wednesday morning.  Everything went fine and on time.  By 9am he was back home and relaxing with Dolly.  We haven't really talked about it but it's there, we both know it and the anxiety level just creeps higher as the night falls.

We did take an anxiety break Wednesday night and took a drive down the new 540 before the toll begins on Thursday.  I'm sure everyone is surprised at us taking such a thrilling adventure on the night before we get the scan results.  Yes it was an amazing experience.  We were both overwhelmed with excitement. We came back home exhilarated and astonished at all the fun we had.  Imagine, riding down 6 miles of highway without paying for it.  It's hard to match that when it comes to having fun!! :) (for anyone confused, that was filled with sarcasm).

But after a very long night, a VERY long mostly sleepless until this morning just prior to the alarm screaming in my ear, we're off to the Duke Cancer Center for the appointment with Dr. Zafar and/or Leigh Howard at 8:20 am this morning.

It may seem like it was a lonely walk for Joe over to the Cancer Center but I just had to hang back for the photo op.  I ran to catch up afterwards.  We're all checked in and waiting. 

The waiting is over and the results were anything but what we were hoping for.  Since the last scan 6 weeks ago, the tumor in the pancreas has grown approximately 20% more and is now at 3.8cm.  Also, several lesions have appeared on his liver, the largest of which is 1.7cm.  What this means, time to change to a much more aggressive chemo treatment.  First up, Joe will have a port inserted next Wednesday and then the first treatment will be Monday, August 13th.  No more of the 1 hr treatments.  The new procedure will last 5-8 hrs every 2 weeks with the addition of a 46 hr pump that he will go home with and then Home Health Care will come disconnect on Wednesday.  There are three drugs involved: Irinotecan, Oxaliplatin and 5-Fluorouracil (in case anyone wants to Google them).  The side effects will be more severe so we will just have to monitor and adjust accordingly.

Of course we are a little overwhelmed right now, and not in a good way.  It will probably take a few days or maybe longer for it to really sink in.  Numb is the word of the day I guess.  Joe has just gone back for some lab work in prep for next weeks port insertion and I'm sitting here typing and crying.  Strangely, here at the Cancer Center, that isn't unique behavior.

Joe came out from labs and we went downstairs to the food court so he could have breakfast since he hadn't eaten all day. A few more tears flowed from both of us down there as well.  It was while there that Joe had the realization that since he wasn't having chemo today he would have to pay for parking.  As if our day wasn't bad enough, now he has to fork over $3.00. 

To all those who have reached out to us with prayers and support, we thank you and hope you will continue to help us.  You are loved by each of us and greatly appreciated.

Decisions, Decisions

Tomorrow we have a doctors appointment at 9:20am with Dr. Zafar or Leigh Howard at the Duke Cancer Center. The reason for two doctor's appointments in a row is that we are to give the doctor Joe's decision on what treatment he wants to proceed with due to the growth of the tumor revealed in his last CT scan. Last week Dr. Zafar presented two options. Option 1: continue with his current treatment and have another CT scan in 6 weeks (which would be earlier than his normal schedule for scans) or Option 2: Change the treatment now to a more aggressive type of chemotherapy that unfortunately would have more debilitating side effects. I won't go into what some of those side effects are, but lets just say they would not be pleasant, especially for Joe. If we go with Option 1, then depending on what the scan in 6 weeks shows, we would re-visit the idea of changing his treatment. Meaning, if the tumor has continued to grow, then we would switch to the new treatment. If there was no growth or minimal growth, then we would stay with his current treatment. We have thought about it since last Thursday and have come to a decision to stay with the current treatment and have the earlier CT scan. However, we have lots of questions about the other treatment so we might as well go ahead and ask all of them this visit in the event we have to change in the future. Better to be informed ahead of time rather than get blind-sided by something.

We didn't come by the decision lightly. Part of me would like for them to throw the biggest nastiest hardest form of chemo at the tumor and squash it. However, the rest of me knows what that would do physically and emotionally to Joe. The side effects would be horrible. I don't want that and I'm sure Joe doesn't either. Maybe some people will think this is not the right decision, I even question it myself. But nothing is guaranteed. There are no guarantees in life. That we learned in November of 2010. But enough of the downer talk, right? One solid reason for our decision is that the markers from the labs done at the time of the scan were good. No real change with them. Another reason, although I respect those professionals who read the scans, no one is perfect and I would like to have another scan done earlier.

We got a dose of what we might expect from a change in Joe's chemo treatment this past week. Joe started having stomach pains on Friday evening along with running a low grade fever. This continued on into Saturday. That day pretty much was a wash as both of us just laid around the house. I did manage to leave the house twice, first to get lunch and then dinner. Joe slept and complained of his stomach feeling bad. His fever never got to the 100 mark, but stayed in the mid 99 range most of the day. By late that night the fever seemed to have subsided so Joe was able to play for both services at PGUMC on Sunday and then accompany TGMC for their last concert of the year. Although he was able to get through it all, he was very tired and by Sunday evening his fever had returned and his stomach was once again hurting. Monday morning his fever was gone, but he was still experiencing stomach issues. This continued until late in the day on Tuesday when Joe started describing it as just a slight discomfort. Of course, we don't know why his stomach was hurting: tumor issues? hernia issues? or just stomach ache? We may never know, but it was a taste of Joe feeling bad for several days in a row.
I think one of the reasons why we took the news last Thursday so badly is that we've grown accustomed to Joe having good scans, feeling well most of the time and probably were just in a little complacent. The news was a dose of reality, at least for me.

But the week hasn't been all stressful and gloomy. On Tuesday, Joe took Dolly to the kitty spa. She got to spend 4 hours being bathed and pampered. She came out all fluffy and smelling good.

Thank you to everyone for the outpouring of love this past week. It has been a hard time for Joe and me but knowing so many people care so deeply is a great comfort

CT Scan results are in and the answer is....................

NO GROWTH of the tumor!  Every 2 months we have those few days in between the scan and getting the results from Duke that are somewhat nerve wracking.  But for the 3rd straight time, Joe has a great report from Leigh Howard with no growth of the tumor.  The chemo is working to maintain it.  Of course ideally we would like to have the tumor shrink, but we will take no growth any day of the week.

You can tell by the smile on his face that Joe was quite relieved and happy with todays results (you might have to zoom in on the face - but I guarantee you there is a smile).  Anyway, he is currently hooked up to his chemo in the infusion center and should be out of there within the next 30 minutes or so.  All in all, a smooth morning.  Now he can relax a little this afternoon, go for a walk on this glorious day, get some exercise and fresh air and hopefully sleep tonight (with the help of chemicals).   He is also battling the start of a head cold so we have to keep an eye on that to make sure it doesn't get too bad.  I may try to get him to wear surgical gloves and a mask when in public for a few days.  But that will be easier said than done.  However, stranger things have happened.  Sitting at Bible study tonight with a mask on might be interesting!

Thank you for the continued support and prayers.  We love you all for everything you have done for us and every kind word.

A Picture is Worth a Thousand Words

The picture below should say it all with regard to the results of Joe's latest CT Scan.

Joe is all smiles and so am I that the CT scan done of Friday showed no growth of the tumor. STATUS QUO.  It was a long anxious weekend waiting for this morning and the results.  But it was worth it for these results.  A few more months before we have to worry about another scan.  Now we can both relax a little and enjoy the Holiday Season.

Thank you to everyone for your prayers, thoughts and concerns.  Someone is listening.



Some People Just Don't Learn

Can you guess to whom I am referring?  If you said, Joe Lupton, you would be correct.  Since Monday I have heard Joe tell numerous people about the great news that the tumor has not grown and then go on to say how good he's been feeling and that he hasn't had a fever since late June when we were at the beach.  He then proceeded to attend the prayer vigil in downtown Raleigh Monday night (after having his chemo treatment at Duke Monday morning), attending the prayer vigil at the legislature building in Raleigh at noon on Tuesday, in the heat, for a couple of hours on Tuesday, 2 piano students later in the afternoon, then TGMC rehearsal last night for over 2 hours.  He did sleep late this morning, but of course, he is now running a fever and in bed.  I'm trying very hard not to say "I told you so", but there, I just said it.  Some people just don't learn.

Update:  Joe kept his fever Wednesday night and missed choir practice (thanks Challie & Allana for stepping in for him).  He kept taking Tylenol every 4 hours and by Thursday morning his fever had broke and was back to normal.  He has felt tired and has been battling a headache all day.  Only a half hour before we need to leave for Bible study and not sure yet if he will be able to go.  Maybe half a night or if he isn't up to it, I'll Skype him in so he can watch & listen.   Regardless, he feels better today, but just needs to behave himself and not overdo it.

Duke Clinics Make My Head Hurt

Today was a long morning and early afternoon at the Duke Clinics.  Before I get to specifics of what the assorted doctors had to say, please indulge me and allow me to complain.  And before you say anything, I am well aware that I am complaining a lot lately.  Believe me, Joe points out my complaining constantly. First, we arrived for his oncology appointment early....and by early I mean 7am for the 7:30am appointment.  Hoping against hope that they would call him in early for his blood work......they didn't.  At 7:30am, he was called for that.  First hope of the day dashed.  We did get back to see Leigh around 8:15am so we were very hopeful.  Sure enough, Leigh was back there on time (thank you Leigh) and we were out at 9am with only 1 floor to go up for Joe's 9:15am appointment with the surgeon, Dr. Lagoo.  We got there at 9:05am., again early.  Unfortunately we were still sitting in the waiting room at 10:15am.  Second hope dashed.  We were called back shortly thereafter and did not have to wait in the exam room for long before a doctor, not THE doctor, came in for questions and an exam, with a med student tagging along.  After this exam, they left, we waited 15 minutes, they came back for more questions and left again.  At 11:30am Dr. Lagoo arrived, spent time talking with us, asking questions, answering questions, and examined Joe.  We left there at 11:50am to go to Joe's 11am chemo appointment. Yes that's right, we are leaving 50 minutes after we were supposed to be there.  Needless to say, they don't hold your place in line if you are not there on time.  So at 12:15pm, 1 hr and 15 minutes from when we were supposed to have started, Joe is buzzed back into the infusion center.  As always they get right to work and by 1:15pm we were out of chemo.  We had a prescription from the surgeon to fill that required us to go the the basement via the yellow elevator to the "Brace Shop", yes ladies and gents they have a department called the Brace Shop.  After waiting 45 minutes in the waiting room, Joe went and asked how much longer we would have to wait.  The reply, not much longer, the person you will need to see is at lunch.  Joe asked for the prescription back and we left.  I took Joe home and finally got to the office at approximately 2:35pm.  Needless to say, not much of a work day for me. My plan was for about 12:30 at the latest.  Third hope dashed....I guess you could say 3 strikes and we were out.

Ok, now for the details.  The oncologist was pleased with Joe's blood work as usual but did inform us that his potassium was low, so now he has another set of pills to take.  We no longer have a medicine cabinet, we just moved all the meds to one of the kitchen cabinets.  They can hold a lot more.  The appointment with Dr. Lagoo, the surgeon, went very well.  Along with the resident they took more than 45 minutes with us, discussing Joe's hernia, what surgery would mean, how it would effect his chemo schedule, quality of life issues and generally asking and answering every question we had and what we had hoped for the previous week but didn't get from Dr. "He whose name shall not be spoken".  However, Dr. Lagoo does agree with said un-named doctor that surgery right now is not the best option.  There is no guarantee that the surgery could be done laporascopically and if not, Joe would be looking at 6-8 weeks without being able to have chemo treatments, which is not optimal.  She did suggest that he get a binder (think girdle not 3-ring) to wear around his mid-section to add support as well as keep the hernia from coming out so far.  Besides the extra support it will also cosmetically help disguise or hide the hernia.  The down side, it's hard to keep his pants from sliding down with the binder on, so LOOK OUT FOLKS!   You might be seeing more of Joe than you would want to. Joe also got a prescription for something to help him sleep on chemo nights which have proven difficult for him because of the steroids they give him during his chemo infusion.

The plan as it stands now is for Joe to finish this cycle of chemo, 1 more week. Have his week off and then do his next 3 week cycle and then get a new CT scan to see how the tumor is doing.  Hopefully it will show more shrinkage like the last scan, but at the very least it will give us an idea of how the tumor is behaving should there come a time when he does have to have the hernia surgery.  So for now, we continue on our merry way with the same course of treatment without interruption.  Dr. Lagoo was glad to have gotten the opportunity to see Joe and go over the case with him so that if at some future date the surgery does become necessary, she will know his entire history and be prepared.

As for Duke Clinics making my head hurt.....one granola bar and a cup of coffee is not enough for me to live off of for 10 hours.  Combine that with waiting, sitting (makes other areas hurt) and lots of white coats and your head would hurt too!

Thanks as always to everyone's prayers, thoughts and concerns.  We love all of you for it.

P.S.  Joe just piped in that I should add that even with the long days and my head hurting we are very grateful for the care that everyone at Duke has given him.

Oops....Joe forgot to mention something yesterday

Joe was so pre-occupied with having to get the IV of fluids yesterday and leaving his cell phone in the car that he forgot to post the most important news from his trip to Duke on Friday.  The resident in radiation and Dr. Zafar's nurse, Minoka, both confirmed that the ultrasound from Thursday showed no problems with the stint so it is believed that the rise in his bilirubin count was most probably a reaction to the chemo.  Now that his chemo & radiation treatments are over, hopefully the count will start to come back down.  However, this morning (Saturday) has not started off well.  He has already had some severe nausea and vomiting issues, again.  We are getting ready for the funeral of a dear friend, so Joe is a little anxious.  Hopefully that is all it is.  On a lighter note, during his shower this morning, since his radiation is over he was able to scrub the areas on his torso where the radiologists had drawn marks for his treatments for the first time since the first week of December.  He is extremely clean today.

Day 1 at the Duke Oncology Clinic: November 11, 2010

As the button on the Duke Oncology Clinic employee says:

CANCER SUCKS

Today we had my first appointment at Duke with the medical oncologist, Dr. S. Yousef Zafar and his team.  Although the initial wait in the lobby of the Oncology department was an extended one, I enjoyed the free cookies that they have out for everyone. Jeff however, abstained and only looked at me with his often seen look of disapproval. (Please note, that it is Jeff, not me that is typing this).  They also had complimentary soft drinks, coffee, tea and water.  After filling out an extended electronic survey of my physical and mental state, we settled in to people watch.  Of course, the moment that I went to the bathroom, they called my name. 

First came the obligatory weigh-in, temperature & blood pressure vitals.  However, the rather short nurse had to call in reinforcements to measure my height as she could not reach up to the top of my head.  From there we were taken to the examination room where I was first interrogated by Dr. Zafar’s nurse and then the oncology resident.  The resident, who speaks highly accented English, proceeded to do a physical exam as well.  We were then left to wait for the “real” doctor.  It really was not that long before Dr. Zafar came into the room with his resident and discussed what he knows thus far and what we will still have to wait to find out.

What he knows:  The CT scan and ultra-sounds show a mass on my pancreas.  The conclusion is most likely pancreatic cancer. However, that diagnosis cannot be verified until there is a biopsy.  The mass has obstructed the duct leading from the pancreas that flows to the liver and is filtered out to the rest of the body.  With this obstruction, the bilirubins are building in my system.  This is the cause of my jaundiced appearance (my skin is yellow).  The obstruction has to be alleviated.  This can be done by inserting a stint into the pancreas to open the duct allowing it to work more normally.  This needs to happen sooner rather than later.  The procedure involves going down the throat to the pancreas. However, if the opening in the duct is completely closed, then the stint isn’t possible.  In that event, the surgeon will need to go through the side of the torso and insert a tube that will be exposed to the outside of the body, allowing the pancreas to drain.  The biopsy will also be performed by going down the throat to the pancreas.  The best case scenario is that the biopsy and stint can be done at the same time on an “out-patient” basis.  The appointment for the biopsy & stint placement will be made ASAP.  Hopefully by early next week, both will have been completed. 

What he doesn’t know: Only the biopsy will confirm whether or not the mass is cancerous.  That conclusion will determine the course of treatment. He did say that if cancerous, the typical course of treatment was: Chemo/Radiation, then surgery, then more chemo.

Where from here: I have an appointment with Dr. Zafar next Thursday, where hopefully, the biopsy results will be in, my bilirubin level will be down due to stint or tube and at that time, we will learn what the course ultimately will be.

Everyone that we came in contact with today at Duke was upbeat, positive and seemed to care.  Jeff and I both left with a good feeling about Dr. Zafar and his team, as well as the future.