One of the Top 3 Worse Days We Have Had

For regular readers, remember the days when my posts would be clever, whimsical and humorous to read?....well this won't be one of them unfortunately. Before today, in the last 2 1/2 years we have had 2 really bad days. Bad day #1: November 8, 2010 - The day that we found out Joe had pancreatic cancer. Bad day #2: February 22, 2011 - The day of his surgery when we found out they could not remove the tumor. Bad day #3 - Today, January 3, 2013 - The day our oncologist advised us that due to the continued growth of the tumor in Joe's pancreas as well as the growth of the lesions on his liver, he felt it was time that we discontinued any further chemotherapy. Stop trying to treat the cancer and start working on increasing Joe's quality of life. This was not an easy conversation for Dr. Zafar. He took longer than normal to come in the exam room, he came in quieter than usual. But in typical Yousuf Zafar manner, he told us the truth, his professional opinion, and our options, all with a half smile and a sense of true caring. I wish everyone could experience being around him (not necessarily in the Cancer Center surroundings - I don't want that for anyone), but could know him and know how much he cares about Joe and me. How well he has always treated us. How hard he has tried to give Joe the absolute best care possible. When they were passing out "bedside manner", he got a double dose. He is a wonderful doctor and person.

But what are our options: 1- Discontinue chemotherapy and start with a home health care nurse coming to our home once a week to check on Joe, obtain vitals, examination, answer questions and be a "go between" for us and Dr. Zafar. We will still see him as often as we want too. That schedule can be worked out however best works for us. We would concentrate on getting Joe feeling better. Trying to increase his appetite, monitor any pain and manage as necessary and help Joe continue to do the things he loves most: continue with the choir and playing the organ/piano at PGUMC, teach his private piano students and be able to get out and see friends. Basically, return Joe's life to the normalcy that he had before the last few months of intense chemotherapy. The side effects have taken a big toll on him. 2- Dr. Zafar can refer Joe to another facility for a 2nd opinion. He can refer locally to UNC or wherever we would like to go including Johns Hopkins and other well known facilities. We just need to name it. 3- Try a different combination of some of the 6 different chemotherapies that Joe has already undergone.

We have an appointment with Dr. Zafar (he wants me to call him by his first name...but I find it really hard to do. After all, he's Dr. Zafar! ) next Thursday morning where we will have to give him our decision.

It's been a very emotional day for both of us. I cried at the appointment, Joe cried at the appointment. I cried at home, Joe cried at home. I cried at work, Joe didn't go to work so no crying there. This evening I have had conversations with my family and Joe's family. We wanted to talk to them before we published anything. We have gotten lots of texts, emails and phone calls. I have gone through the story today with 6 different people. I can't do it anymore. Besides starting to loose my voice, I am tired of telling it. It exhausts me. Joe is having some voice issues of his own. It sounds like he is getting laryngitis, but has no other symptoms of an oncoming cold. Therefore, he just isn't talking if he can help it.

To everyone who has called, texted or emailed, I apologize for not answering. It was very important to us that our family know about today before anyone else. This isn't something I can put in a text. Thank you for the love and prayers. Matt, Jeannette, Izzie & Jake: Thank you for the flowers to brighten our day. They could not have come at a better time.

Please say an extra little prayer for Joe the next time you talk with God. Say one for me too. I need the extra help to be stronger right now.

Chemo Day.....Oops, No Chemo After All But Blood Instead

This past weekend was wonderful. Joes's choir at PGUMC put on a magnificent performance with their Christmas cantata. The combination of the 20 voices and 11 instruments was magnificent. I wish everyone could have heard it. Joe had worked so hard to pull it off and he did. Even when not feeling his best, he rose to the occasion and anyone that was at either the 8:30am or 11:00am services were treated to a beautiful program. We even got to see some of The Grove service regulars there to see and hear the cantata (Larry it was very good to see you).
Today however, reality was back as we had Joe's next doctor and chemo appointments. After dropping Joe off a little after 7am at the Duke Cancer Center for labs I went on to the office and Facetimed his appointment with Dr. Zafar. Joe's blood work was not optimal and thus Dr. Zafar wouldn't allow the chemo treatment. Instead, since his hemoglobin counts were low, Joe got a blood transfusion instead. This of course meant more blood work to verify blood type before he could get the transfusion. We had to wait 2 1/2 hours before he was called for labs and didn't get up to the infusion center until after noon. The wait before going back for the transfusion was 2 hours. But finally we got back into a room. It even is a room with a quasi view!

Still though, there was a wait in the room before the blood came.  Apparently they were experiencing difficulty with the tube delivery system and all drugs, blood, etc. were having to be hand delivered.  It was well past 3:00pm before it arrived and started flowing, but it did.  Joe's first comment is "it's like True Blood" (HBO vampire show).

Another observation (one i have complained about for two months) was that Joe's belly, where the hernia is, has gotten larger and larger and is now looking very distended and bloated.  Even Dr. Zafar's nurse noticed his belly as soon as she entered the exam room.  With that in mind, Joe is having an ultrasound tomorrow to see if there is any fluid build up or some other cause of the bloated appearance.  We will cross the bridge to treatment for that depending on what they find, if anything.  On January 2nd he will have a CT scan to give us a new "baseline" for where we stand as far as the tumors size and then he has a doctors appointment and chemo on the 3rd.  Also, his stomach issues don't appear to have been completely resolved, so he will be back on antibiotics for the next 10 days. 

So that has been today. We finally left the DCC a little past 6pm.  Not exactly what we planned on, but then it has become commonplace  for our plans to not go as planned.  Joe is handling it well.  He's tired of being tired and I'm tired of him being tired.  He however is much stronger than me.  He sits here calmly.  I sit here anxious with tears.  I was all smiles yesterday.  So proud of Joe.  So proud of the PGUMC choir.  I beamed.  Today I find it hard to manage a smile.  I need a good comedy...a good long, gut busting laugh.  Maybe I should just have Joe dance for me.  That's always good for a chuckle.

Thank you to everyone for the cards, emails and prayers.  We both greatly appreciate them.

"Worship fully, Spend less, Give more, Love all"

The First Week of the Big Dose

As I said on my blog post on Monday, this week was Joe's first treatment with the increased dosage to last three weeks. There are several advantages to doing it every three weeks. Obviously there is the time savings by not going every week. There is the money savings by not paying the insurance co-pay every week and there is the less time away from work for me by not going to the infusion every week. Those are the pluses. We are now discovering the negatives: extreme fatigue, extreme joint pain and extreme "I don't want to do anything but lay on the couch" syndrome. Joe today questioned whether he wants to continue with the increased dosage or go back to each week. I think we will see it through the holidays with just the one more treatment on December 17th and then maybe after the new year, go back to weekly.....possibly.

We also got the lab results from the "specimen" jars he dropped off at the Duke Cancer Center back on Wednesday. He did test positive for the C-Diff infection but not positive for the Odon parasite. He's back on an antibiotic and having to supplement his diet with pedialyte and bananas. Not sure what purpose the banana has other than potassium but he's eating a couple a day. He was having a pretty good day today, better than the last two days, up until this evening when he started feeling nauseous and began throwing up. We had been so pleased that this treatment didn't seem to be causing any nausea, or at least minimal. We are hopeful that tonight is maybe from the C-diff and not the chemo. Regardless, he feels really bad tonight. It always seems to start on Saturday evenings. With his music all planned out for Sunday, it upsets him a lot when he has a bad Saturday. He then gets very anxious about how he will feel the next day. Me, I just stay anxious each and every day. It's really disappointing for this to be happening tonight since we've had a good day. We went to PGUMC this morning and I helped with the Christmas decorations and Joe practiced his music for tomorrow and then we had a quick lunch and a very quick trip to Costco. The Costco trip was shorter than usual because he was tiring. Another symptom he's been having the last three days is dizziness, and I don't mean the quirky kind. The actual room spinning, I feel like I'm going to fall down kind. There will be another call to the Duke Cancer Center triage come Monday with that symptom. I know that typically it can be caused by dehydration and that may be all that it is. I'm becoming quite the pusher of water and fluids. I'm also becoming quite annoying to Joe when it comes to that topic, I do believe.

We had Dolly cremated while we were in the mountains (that ever so brief trip) and this week we got her remains from the vet. We haven't gotten her a permanent container like we have for our last three kitties but we will. Until then, she will stand tall in her fake marble container from the vet's office. Her brothers are jumping with joy to have her with them in "kitty heaven" chasing butterflies. (Joe's words, not mine)

The photo is the urns for (left to right): Hannibal, Nona, Dolly, and Bud. Our family of kitties that will always be in our hearts and minds.

A Day Like So Many Others...

...yet so different.
Today Joe started back his chemotherapy treatments after a month off due to being hospitalized, on antibiotics and the Thanksgiving holiday. Before his last hospitalization, he had been doing his treatments every week. Now, however, he is doing them once every three weeks, getting a larger dosage (4 hours long). He had his lab and doctor appointments early this morning prior to his treatment. He saw Dr. Zafar and of course after last weeks fever there were lots of questions. Joe was a good patient and told him about every issue he has had in the last few weeks. Since coming off the antibiotics he has been experiencing some stomach issues so now he has to provide a couple of "specimens" to make sure he doesn't have a c diff infection. He is so looking forward to delivering the samples tomorrow. Since he was already scheduled to go back to the Duke Cancer Center tomorrow for a shot to boost his white cell count, he'll just have to make a detour to the third floor to drop off his two cups (hopefully in a non see thru bag).

What made this treatment different is that it was the first long one that I wasn't present for. I'm here to tell you that I didn't like it one bit either. It will be the first and last. His next appointment isn't until December 17th. If he can just stay healthy, keep fevers away and stay out of the hospital, then life will be good.

With the higher dosage, we can expect the accompanying initial symptoms to increase: more fatigue and more joint aches. Hopefully however, by the end of this week, the symptoms will have eased and he will have a couple of really good weeks before his next infusion.

We both really appreciate all the words of encouragement and support this past week. It wasn't the best of weeks but your concern has been a big blessing. Thank you.

While waiting to pick Joe up, I had a lovely ride around Duke Chapel.

This Weeks Draws to an End

It's Saturday night and this week is drawing to an end. And for the first time in many, many weeks, it has been a good one. Joe has not had a single fever, has felt good every day, has not had any real issues with his antibiotic infusions or tablets, had a good choir practice, good doctors appointment and NO hospital visits! All in all, I'd take duplicate versions of this week each and every week.

At this week's oncology appointment, Joe and Leigh decided that when he resumes his chemo, he will be doing the 1 large dose every three weeks. Since we are going away the week of Thanksgiving, he will start on the Monday after we return. The reason for the delay rather than starting the week of Thanksgiving: he will have to go to the infusion center the day after he gets his chemotherapy treatment to get a shot to boost his white cell count. Since we will be in mountains, that would be hard to do, so we will just wait another week.

Joe has been on oral antibiotics three times a day since he was released from the hospital and will be on them until next Saturday, November 17th. Also since his release he has been infusing a liquid antibiotic once a day for an hour through his picc line. That will end this coming Wednesday, November 14th. After his infusion that day, he will have the picc line removed. Dr. Zafar doesn't want anything foreign in him for any longer than necessary. The home health nurse will remove it after the infusion. Joe is really looking forward to that coming out. Wrapping his arm in plastic wrap and press-n-seal to take a shower is getting really old.

But this post isn't about complaining (which I know seems to be all I do sometime). Since the first of November, many Facebook friends have been posting something that they are thankful for each day. So with that in mind, I thought I might list some things I am thankful for as well.
1- I am most thankful for Joe. For the last 15 years he has given me love and strength. He has taught me how to be a better person and brought so much joy into my life that I couldn't possibly ever repay him.
2- I am most thankful for my family. My sister Phyllis, her husband Woodie, my nieces Aimee & Sara and my nephew Wayne. My brother and sister-in-law, Bill Lupton & Sandy Okasaki. They are a constant source of love and support. I know that I have sometimes taken them for granted but I truly appreciate how much they have done for me and for Joe. They love us unconditionally and show that love all the time.
3- I am most thankful for Pleasant Grove United Methodist Church. Everyone from our pastors to the staff to the choir to the general membership have been caring, supportive and loving in every way. I never thought such a large group of people could find a place in my heart in such a big way.
4- I am most thankful for my friends. Joe and I have wonderful friends who reach out to us all the time. I work with an incredible group of people who are always there to lift my spirits when I am down and to help me smile when I didn't think I could.
5- I am most thankful for Dr. Yousef Zafar & Leigh Howard. Our oncology team has been with us on this journey for 2 years and they have always made us feel that we are priority number one. They inspire us with their optimism and positivity. We have had 3 different nurses during the last two years: Minoka, Mark & Darryl - All three of you are treasured and both of us appreciate everything you have done for us.
6- I am most thankful for our radiologist, Dr. Czito; our surgeon, Dr. Tyler; and all the nurses and staff who helped us during those trying times.
7- I am most thankful for the nurses and staff of the 9th floor of Duke Hospital. We have made 6 trips to the 9300 wing. Every time the care that Joe and I received was incredible. Every nurse was caring in such ways that one would not think possible. They looked after Joe day in and day out, helped me day in and day out, comforted me on those bad nights, made me smile or laugh on those really bad nights and always treated us and our relationship with the utmost respect.
8- I am most thankful for my health. Even though I have always been the "sickly" one with all my allergies and aches & pains, I know what real sickness is.
9- I am most thankful for the readers of this blog. You take the time to read my ramblings because you care about Joe and about me. You take the time to comment and send words of support. You say prayers. You offer help. I write this blog as a way to help myself deal with things. I write to help my sanity. I write it with no expectations of it being read, but you do read it. I thank you.
10 - This one will seem strange. I am most thankful for the cancer. Don't get me wrong, I wish I could snap my fingers and it was gone. I wish this terrible disease had never reached out and touched Joe. I wish cancer of all types could be eradicated. But it is here and it is a part of mine and Joe's life. But even though physically it has done it's damage, it has not defeated us in anyway. What it has done is bring me and Joe closer. It has changed our relationship for sure, but for the better. It's hard to argue over the petty stuff (although Joe will probably disagree that I still argue over petty stuff). We have found a better level of understanding of one another, a better understanding of what we mean to each other. Simply, we are better together now than before. Three years ago we were plodding right along, taking many things for granted, maybe even taking each other for granted. We don't do that any more. Now we treasure every day and every experience. Cancer gave us that rather than taking something away. For that I am thankful.

Thank you for your prayers and words of support. I thank you and appreciate you taking this time out of your busy day to read this post.

P.S. I have received some very nice comments to this post from some highly cherished friends. Here is but a sampling:

"YAY!!! You know it's a good week when there are no fevers and no hospital visits!!! Enjoyed your blog post. Hope you get to savor the delight of a fever-free/hospital-free week. See you tomorrow." Allana

"What a beautiful post you wrote tonight. WOW! That is awesome to be able to be thankful in the midst of all you two are in the midst of! Very impressive! What beautiful people you are! God bless you both! Fondly," Fredda

"I am thankful that Joe has been fever free and hospital visit free this week.
I am thankful that Rob and Joe met on that first day at uncg in 1974.
I am thankful that you and Joe call us friends.
I am SO thankful that you came to Connecticut to get married and to renew/cement our friendships.
I am thankful I have met all the wonderful PGMC folks AND got bread!
I am thankful that you both get tender loving (and skilled care) at Duke.
I am thankful for technology like skype, imovie, iphoto, etc that helps bring us closer in funny Cheeto kinds of ways...AND in ways like seeing Joe's wonderful piano concert!
I am thankful for the blog that keeps us up to date.
I am thankful that we had such a WONDERFUL visit with you this summer. We still talk about it.
I am thankful that we have things to look forward to sharing together.
Hugs!" Lola

"Jeff, You are an amazing and gifted writer. When I read your words, I can just hear you talking – like we are sitting and chatting in person. That is a wonderful talent. So I am thankful for your blog. I love you both so much and I want to stay informed on how things are going. I want to know how you are feeling and how Joe is feeling. Through your blog you keep me in the loop. Dave or one of the girls will ask me once or twice a week if I have any news on Joe – has Jeff updated his blog, particularly when Joe is in the hospital. So I’m not only in the loop, I have become part of the loop of information and love and prayers. Love," Cindy H


"What a beautiful post! Indeed, dire illness often brings so many issues into their true perspective. It's the fire that can either destroy or burn out the dross from a relationship; I'm glad you two have come through thus far with a stronger bond." Jean

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.



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.

Another in a long line of firsts!

Today is another day in a long line of firsts.  On November 11, 2010 was Joe's first oncology appointment; November 18, 2010 was his first stint placement surgery; December 6, 2010 was his first radiation treatment; December 13, 2010 was his first fever and admission to the hospital; December 21, 2010 first day of chemo ( Zeloda); February 17, 2011 first trip to the Duke Emergency Department; February 21, 2011 night before his surgery; March 11, 2011 first post surgical infection trip to Duke; April 25, 2011 first chemo (Gemcidobine); July 18, 2011 first appointment with surgeon  for hernia; June 21, 2012 first CT scan with negative results; August 2, 2012 decision to change to a more aggressive chemo; August 8, 2012 first surgery for port insertion; August 13, 2012 first chemo treatment with new regimen.

And here we are.  After early morning labs and doctors appointments, we were up in chemo at 9am but were not called back for infusion until 10 am.   So after all the pre-drugs, he is all hooked up as of 11 am with an end time of 3 pm.

Hannah came by for support and some laughs!

Joe all hooked up and going.

There are LOTS of drugs running.

He now has lots of bags of chemo flowing. Only thing missing at this point is the third chemo which he will get hooked up just before we leave. That one goes home with us with a pump for 46 hours. The best part of the day so far was the visit from one of Joe's favorite former students, Hannah Lingafelt. It was practically a party atmosphere in here for a while. It really lifted Joe's spirits to have her visit. There's a lot to be said for laughs and smiles!

Hopefully the rest of the afternoon will go as well as the morning. Time will tell......and so will I, later this evening.

Thank you to everyone for your words of encouragement and prayers. Both of us greatly appreciate it.

4 p.m. Update:  That's what time we finished.  All totaled, Joe was there for 9 hours.  However, in all due fairness, he was only hooked up to his chemo treatment and assorted other drugs for 5 1/2 hours.  Now he just has 46 hours of more chemo here at the house with what he describes as a "cute accessory".  I call it a fannie pack straight out of the 80's.......and I can't think of anything less cute :)

8:30p.m. Update:  We had supper brought in.  Joe ate alot!  Apparently his appetite was not effected by today.  He is very thirsty due to the drug they gave him when he had a bad reaction to the irentican.  He's drunk more than 64 ounces of luke warm lemonade since 6pm.  One of the side effects of one of the other chemo's is that he can't have cold liquids or foods for 3-4 days.  That also includes touching cold things.  No hands in the refrigerator for a few days.  He's complained the last hour or so about a slight headache but he is allowed to take tylenol so that hopefully will take care of that.  He has complained about being tired also. Come to think of it, he's complained a lot.......but I guess he is allowed.  As long as he can text with Jill for a couple of hours he will be fine.  Me?  I've mowed the yard this evening...sweated a ton....taken a shower and am POOPED!!!

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

Thank Goodness It's Thursday...

Not that I'm wishing my life away, but I do wish it was Friday already.  It's been a long week, both at work and at home.  The biggest hurdle for me this week has been my allergies.  The biggest hurdle for Joe has been fatigue and swelling in his right calf along with some pain.  Yesterday he said it was feeling better but that will be something on the radar for his oncology appointment next Thursday morning at Duke.  During each exam they are always checking his feet and ankles for swelling, so I am assuming this might be a normal reaction, but none the less we will be sure and mention to the doctor.  This has been his week off from chemo until the next round of 3 weeks starts next week.  Also next week he has a new CT scan to check on the status of the tumor.  The scan is Monday but we won't know the results until Thursday (April 26) at his regular appointment.  I like it much better when there is only a day or 2 before we get results.  Four days is just torture.  Talk about anxiety!

But enough about him, let's talk about me!   Just kidding.   However, at work it looks like a decision on where we are moving our office has been determined.  The new office location is just about 1/2 mile up the road but there is so much to be done.  Besides just the physical move, there are a myriad of other things to get done:  phones, internet, copier/printer set up, moving the server, installation of the new desks & cubicles, new lobby furniture & furnishings, new reception desk and on and on and on.  I made more phone calls yesterday than I have in the last 2 weeks combined.  I talked to so many service folks that when they started calling me back, I didn't know who was who.  I thought at one point I was talking to the IT guy and it turned out to be the phone guy and then I thought I was talking to the cubicle supplier and it was the cleaning service.  Too many names to remember!!!  I need an assistant to get through this.  But that's enough complaining.

Today, Joe took Dolly to the vet for her annual check-up at 9am, then a piano lesson at 10:30 and then wait around the house for the garage door repair people.  Last night when we got home from choir practice, the garage door would only open about 2 feet.  Even with Joe's Beetle, it would not fit under.  We had to manually open the door (it's very heavy by the way and get Joe's car inside.  Then this morning manually open the door again (it's even heavier at 7:30am) to get my car and Joe's outside.  Hopefully it will be an easy and not to expensive fix.  It does mean that Joe is trapped at the house until they show up.

Dolly on the way home from her check-up

This weekend will be a busy one:  Joe will be accompanying the Durham Public Schools Elementary Honors Chorus today and tomorrow. Concert tomorrow at 7pm at Riverside HS. He has done this for the past several years and is looking forward to working with the conductor, Tom Shelton.  Saturday we will go do early voting at our precinct, a Costco run, and round up all old electronics for the free disposal/recycle in Durham on Sunday.  Sunday we will have church starting at 7:30am, after the 11am service drive to downtown Durham to drop off the electronics, be at the church before 5pm for Joe to work with the youth, then be back in downtown Durham by 6:30pm to be at DPAC for "Bring It On".  It should be a good weekend and as long as I can keep my sneezing and wheezing to a minimum, all will be fine.

*****Breaking News*****
3:30pm - Joe called me at the office and is running a fever and has chills. He called the Duke oncology triage phone number and left a message for Dr. Zafar. His nurse Daryl called back shortly thereafter and Joe told her what was going on. She told him to keep taking the Tylenol periodically and if he starts getting naseaus or throwing up, head to the ER. His temp is like a bouncing ball: up & down, up & down. He had to cancel playing for the elementary honors chorus and I'm not sure if I will go to Bible study or not. As most of you know, I worry.
6:00pm - He has eaten, temp is down for the moment. Hopefully this has all been a fluke and will be over soon.

Thank you for everyone's continued prayers and support.  We have the best friends in the world!

Round 3, Going, Going, Gone!

Today is the last of this chemo cycle for Joe at the Duke Cancer Center.  He texted me at 8:25a.m. this morning that he was done with his lab work and was in the food court getting his breakfast.  We have our fingers crossed that this chemo infusion goes off without a hitch.  His neutrofile count was only 1.9 for last week's labs and the magic number for not being able to get the infusion is 1.5.  Here's hoping he doesn't get a message once he is up in chemo that his numbers didn't drop much.  There have been other occassions where his round 2 counts have been low and rebounded for round 3, but then there have been others where they have dropped.  He's never had to skip an infusion due to low counts, but we've known since this chemo regiment began that it is a likely possibility at some point.  Just hope today isn't that point.  It's been a good week coming off the PGUMC Maundy Thursday Cantata, "The Shadow of the Cross" and the special Easter Sunday music.  He's still getting very positive feedback from Sunday.  Monday was my day off so we went out for lunch and did a couple of errands.  That night we went to Playmakers Theatre at UNC to see a staged reading of Dustin Lance Black's play, "8".  We had seen the LA staged reading on YouTube with an All Star Cast.  We were hoping that Brad Pitt & George Clooney might fly in to repeat their roles, but alas.......  All in all a relaxing day.  His cousin Steve from Asheville came to see us on Tuesday night so Joe and Steve spent the day yesterday exploring downtown Durham and Hillsborough (while I trudged along at work I might add).  Specifically they went to Ayr Mount in Hillsborough.  An estate dating back to 1815.  Both of them were quite impressed.  Here's a photo from Joe's phone, but let me warn you, his phone takes crappy photos.

But they had a great time and that is all that matters.  Steve left last night around dinner time to head back.  Me?  The spring allergies have finally caught up with me.  I usually start the minute the first pollen starts floating around, but I've managed to keep it at bay until the last couple of days.  And they have come on with a vengence!  I was asleep on the sofa around 7:30 last night and managed to wake up long enough around 8:30 to drag myself up to bed.  I'm throwing every allergy medication possibly at it.  Today, I sit at work with water running down my cheeks from my itchy eyes, my trash basket is filling up quickly with disgarded/used tissues and thus far my record for continuous sneezing is 7 in a row.  The phrase "Calgon, take me away" comes to mind.  How long will I last, who knows. 

9:20am and Joe is in his chemo infusion room so his blood counts must have been ok.  That is a big relief.  Now if they will just get him hooked up so he can be out before 10:30am and all will be right with the world, except for my sneezing!

The situation with Joe's family has yet to be resolved.  Joe isn't ready yet to open the lines of communication.  His pain runs too deep right now and it is all too fresh in his mind.  We have talked about him writing to them one day soon but for right now it is status quo with regard to them.

Thank you for all your continued prayers and support.  We are touched each time someone offers a prayerful thought or reaches out to us either online, by phone or in person.  We are surrounded by a lot of love and feel it each and every day.  Thank you.



Chemo Round 2: Or #1 at the New DCC Chemo Infusion Clinic

Today was Joe's second chemo treatment of this cycle but the first treatment in the chemo infusion clinic at the new Duke Cancer Center....and he was impressed!  His lab appointment was at 7 a.m. and he called me at 7:03 am and was already done with the labs and in the food court to get his breakfast.  His chemo appointment wasn't until 8:30 a.m. so he wandered around taking more snap shots of the center.  Mostly of views out the windows of the various waiting rooms, but also of his chair in chemo and the view from the window during the infusion.  That's right, there are actual windows.  You don't feel all claustrophobic like in the old center surrounded by walls and in close quarters to others getting their infusions.  Now you have views, there are curtains to close off your little room if you want privacy and even the person accompanying the patient has a nice chair that reclines (I can see me sleeping already).

The top 2 photos are of assorted waiting rooms, the middle two are looking out over what will be a lawn & garden at the entrance to the clinic when completed and the bottom two photos are Joe's view from his chair and then a photo of his chair (note iPad cover & Chic-fil-a cup - dead giveaway that he was there)

All in all the day went very quick for him and he was out at a decent time.  

Me, I was in CE class.  Although the instructor is entertaining, listening to someone talk about forms for 4 hours is not my idea of a good time.

But at least I have half my yearly credits done.  Just 4 more hours before June 10th and those I will do online.  Much easier and at my own pace (yes, I'll probably be trying to finish on June 9th).

Thank you for all the prayers and emails this week.  The outpouring of love and concern for both of us is much appreciated.  

First Round of March Chemo!

Today was the first doctors/chemo appointment of March for Joe.  Since the new Duke Cancer Center is now open, todays appointment also included a feast for the eyes of the beautiful new facility.  But before I get to that, here's what the doctor had to say.  Joe's counts were very good today.  The "quasi" anemia that Joe had been starting to develop seems to have abated somewhat so that was good news as well.  Joe got to see Dr. Zafar and Leigh Howard today so that was a double treat.  His appointment for labs was for 7:20 but by 7:17 he was already done with the lab portion and down in the food court for his breakfast.  The reason why it was so quick is that many of the doctors have already moved to the new Duke Cancer Center.  The GI doctors won't move for another couple of weeks so that left the old clinic rather empty, not that we are complaining.  Chemo moves next week as well as the lab for blood work.  I "facetimed" in for this appointment since I will be missing part of the day next Thursday for a required CE class that I have to take to keep my real estate license current.  Missing part of 2 Thursdays in a row would not be a good thing.  But I got to ask my questions, reminded him about the refills on the meds needed and basically accomplished what I needed to do or know from the comfort of my office.

But now for the good stuff.  Wait until you see this beautiful new facility.  It has everything from a boutique for cancer patient supplies, hair & makeup salon to make those dealing with cancer feel better about how that look, mood/reflection room with really cool blue ambient light, a gorgeous lobby and waiting rooms, a grand piano where a pianist sets a calming feel for everything, and many more stunning features.  What I like most is the wood work throughout that mimics the feel of Duke Chapel's spirals and architecture.  The outside which is mostly glass does not adequately convey the beauty that is inside (but the outside is very striking mind you).

Ok, so here come the photos.  Please indulge me, we've been watching this building go up for the last 17+ months and it's finally done.

The front of the new Duke Cancer Center

Obviously, just a sign inside the lobby.

The lobby of the Duke Cancer Center(note long fire place on the right)

The aforementioned fireplace in the lobby.



This is my favorite architectural feature.  The wood spiral like arches throughout that mimic Duke Chapel and Duke's campus.

The spiral at the bottom of the stairs.  I'm sure it has some significance, but haven't figured that out.

The grand piano is right next to the spiral.  No one playing this morning.  You just know Joe wanted to go have a sit.  He should have!

The cancer center has it's own cafe so you don't have to go to the Duke Clinic food court if you don't want to for something to eat (but the food court has a bigger variety)

The cafe itself.  Nice bright colors and tons of light.

The registration area/waiting area for lab work.

Need to sit in quiet and relect, they have a beautiful place for that too!

In need of some fresh air on a beautiful day.  There is plenty of outdoor space to catch some rays, relax or have a meal.

Joe attempted a short video of the fireplace.  I emphasize SHORT.  But you get the idea.

The facility is beautiful, has state of the art equipment, the same caring staff and although we would prefer not to have to be making the trips to the clinic at all, if we have too, the new Duke Cancer Center definitely offers an atmosphere where you can get excellent care in gorgeous surroundings.  A big THUMBS UP from Joe and Jeff.

Thank you to everyone for your continued prayers and words of support.  We owe everyone so much in the way of thank you.

Round 2 of 3 for February

Today is Joe's 2nd round of Chemo for this month with the last one next week on the 16th.  He has had a pretty good week thus far, at least a busy one anyway.  On Tuesday night rehearsal for TGMC started again for the spring so once again he will have 3 nights in a row with an obligation.  What's the saying about "idle hands"?....well it shouldn't have anything to do with Joe.  Monday he has Durham Childrens Chorus from 4:30-6; Tuesday PGUMC staff meeting, piano lessons and TGMC chorus; Wednesday piano lessons and choir practice; Thursday chemo, piano lessons & Bible study; Friday just piano and then he normally has a free Saturday before being at church at 7:30a.m until after 12pm.  And this is his retirement schedule.

Joe got to his 7:30am appointment at Duke a little early and was checked in at the chemo infusion center at 8:28am for his 8:30am appointment.  There was time in between for him to go get breakfast in the food court.  He was out of chemo by 10a.m. which might be a record tying time.  I'll have to go back and see if he's made it out before by a minute or two.  Now he just get's to look forward to a couple of somewhat sleepless nights before getting back on track.  He has been battling a head cold for the last 10 days or so, but that seems to be better too.  All things considering, not a bad week (last nights 85-84 win over UNC didn't hurt either).

I hope everyone has a great weekend and thank you for your continued prayers and support.

Twas the Week Before Christmas and Jeff STILL has a Cold

That is my only defense for not posting anything in so long.  I have been battling a cold since early last week.  By this past Friday I had to leave work at lunch time and came on home.  I basically stayed in bed or laying on the couch from Friday at 1pm until we got up Sunday to go to church. (we get up at 6am - Joe has to be there at least an hour before the 8:30 service to practice the organ).

Last week was a huge week for Joe.  He had his regular doctor and chemo appointment on Monday the 12th.  It went well but we were told that his white blood cell count was down as well as his neutrophil count.  The neutrophil count is important because if it drops below 1.0 then they will either have to stop his chemo treatments for awhile or at the very least decrease the dosage.  On the 12th his was at 1.2, not much room for error.  So they tell us for him to be sure and be careful about being around anyone sick and if he should develop a sore throat or a slight fever, to call them at once.  Of course, that Monday is the same day my cold started kicking in. It made for an interesting week trying to keep my distance here in the same house.  However, Joe had a busy week of preparing for the church choir's Christmas music as well as his 4th Annual "Christmas Piano by Candlelight" concert.  Both of which were this past Sunday.

First the choir's performance.  They were magnificent!  I don't use the term lightly either so please believe me when I say it.  Never have they sounded so wonderful and the sanctuary been filled with more beautiful music.    Everyone in the congregation for both the 8:30am service (I did not attend except to take photos) and the 11:00am service was mesmerized.  Joe had arranged for a string quartet, french horn, flute, clarinet, piano and organ to accompany the choir and the sound was so full and glorious.  I wish everyone could have been there to hear it.  I was so proud of Joe and the entire choir.  I still smile thinking about it.

Even Jill was a "trooper" and agreed to put on one of the choir robes.  She played the piano beautifully and we are so grateful to her for stepping up once again and helping Joe out.  

Once the 11:00am service was over, it was time to transform the sanctuary for Joe's candlelight piano concert and then for him to practice some on the piano.

This is only 50 seconds of a couple of hours of rehearsal at the church on Sunday afternoon.  However, it paid off big time as his concert was a resounding triumph (yes, I know I'm getting carried away with the praise, but I can't think of another way to describe it).  Thank you so much to the 170+ people who came out Sunday night for the concert as well as the 3 people (Rob, Lola & Bert) in Connecticut who we Skyped in on my iPad2. They had the best seats in the house.  Lola referred to them as the "Royal Box Seats".  I have heard from several people about how nice it was to spend an evening listening to his beautiful music and to just slow down for an evening during this holiday rush time.  Afterwards, the senior high youth had arranged a reception for Joe in the fellowship.  They went all out with multi-colored lights hung around the walls and wonderful refreshments.  A big thank you to all of those that put forth such effort to make the reception happen.   Sunday was certainly a long day at church. I counted the number of hours we spent there on Sunday and it was more than 10.  Needless to say, we both got lots of religion that day.

Yesterday, Monday the 19th, Joe had his last doctors appointment of 2011.  We were a little nervous about what his white blood cell and neutrophil counts would be since I had been sick around him all week, but it turned out ok.  Actually better than ok.  His white count was up a point and his neutrophil was at 1.7 so he was able to have his usual chemo infusion without any change.  YAY!

This weekend at PGUMC we will have 2 Christmas Eve services.  The one at 4:00pm is geared toward families and is a lot of fun as it is interactive with all the kids in the church.  The 7:00pm service will be a more traditional communion service.  If someone is looking for somewhere to spend a lovely evening on Saturday, please consider the door at Pleasant Grove open and welcoming for you to stop in.   On Sunday, we will have one 11:00am service and then Joe and I will be off to Greenville to have Christmas lunch with his family and exchange gifts.  Then on Monday we will be in Hope Mills with my family.  A bit different than we typically do Christmas but we are very grateful that we are able to travel this Christmas like we have always done.  Last year with Joe just getting out of the hospital and undergoing his radiation treatments, both families had to come here.  It's much easier for 2 people to travel than it is for 9.

Joe and I both hope that everyone has a wonderful Christmas and New Year.  We are so very grateful for all our friends and family and the prayers and good wishes that we have felt all year long.  Although this has been a difficult year, we have grown closer and have never felt more loved and cared for in all our lives.  Thank you for the gift of love that everyone has given us.

CT Scan tomorrow but tonight, Paul Simon

Tomorrow afternoon Joe will have his 3rd CT Scan since he started his post surgical chemo treatments. The last scan showed no growth of the tumor but we won't know the results of this scan until Monday at Joe's oncology appointment at Duke. It will be a long weekend. However, tonight we go to the Paul Simon concert at DPAC. Joe has been looking forward to this for a long time. Not that he hasn't seen him in concert before, but Mr. Simon is one of his "all-time favorites". (He has lots of those). I had hoped to post at least one photo from the concert but Joe's phone takes such crappy photos that it's not worth even trying. We are home now (finally - its 11pm) and Joe really enjoyed the concert. I'm really glad he got to see Paul Simon in concert again.

The rest of the weekend will be decorating the house with Christmas decorations. Joe has finished one tree but still has one to go. I have the rest of the downstairs to work on. We need to get it done so we can get the decoration boxes out of the garage so Joe can get his car back in.

Thanks for all the prayers and good thoughts everyone has been sending our way. You are all much appreciated.

End of Chemo Cycle #.???????...Oh I've Lost Count!

This morning was the last in a 3 week Chemo cycle at Duke for Joe.  I've lost count as to which cycle this is, not that it really matters.  We were a little concerned from last week that he might not get to have his chemo treatment this week because one of his blood counts was low.  He had been warned last week to avoid anyone with sniffles, coughs or sneezing since the low count indicated he could very easily pick up something and his immune system would find it difficult to fight off.  Had the count been any lower today he wouldn't be able to have his treatment.  However, the count was the same, no better, no worse so he was allowed to go on for his treatment. 

He did get the idea last week that wearing the same clothes each week was not a good idea and this week surprised me by wearing something different and crossing his legs differently.  I guess you can teach an old dog new tricks.



He also got his Flu shot.  As you can tell by the look on his face, he is a really big baby when it comes to shots (of course, I am worse, so I have no room to talk).  Mark Bradford, his nurse, was extremely considerate and got the smallest needle he could find to give him the shot.  I guess it wasn't small enough judging by Joe's closed eyes.



But anyway, once Mark was through we left for the chemo infusion center where we parted ways and I came on to work.  Joe was finished with his treatment by 10:45am and on his way home.  Now he will have a week off, hopefully behave himself so there are no fevers and we won't be back until October 10th.

Hope everyone has a great week and thanks for your continued prayers and support.  

Joe Is Repetitive

Joe had his weekly doctor's appointment this morning and got to see Leigh Howard after her 2 weeks off.  I know that Dr. Zafar was probably the happiest person at Duke today.  2 weeks of handling all his own appointments has probably worn him completely out.  We didn't even catch a glimpse of him today so we aren't sure if he even showed up (I'm sure he did...not the type to skip out on his job).   But today went smooth as silk.  We arrived at 6:55am, scanned in at the Kiosk, I went and got coffee & Joe his diet lemonade and by the time I got back he had already been back for his lab work.  By 7:55 we were back in an exam room and about 8:05, the nurse, Mark, was in and a few minutes later, Leigh came in, talked with us, asked the questions, did the exam and sent us on our way.  At 8:30am we were walking out and taking the elevator up to chemo where I parted ways with Joe and came on back to work.  He was called to go back for his infusion at 9:20am and was out of there in just a little over an hour later.  All in all a pretty good day.  But why you ask, did I name this post "Joe is repetitive"?  Take a look at today's photo of Joe in the exam room.

Now scroll down to last Monday's post about his CT Scan results and look at the photo.  Notice anything?  Yep, exact same clothes and Chic-fil-A cup.  Come on Joe, don't be so repetitive.....think outside the box....maybe wear a green shirt....or blue shorts....or different shoes....or oh I don't know, cross your legs the other way....anything!  

A big thank you for all the prayers and good thoughts that continue to come Joe's way.  We both are very grateful.

The End of this Chemo Cycle

Today, Joe completed his most recent cycle of Chemo treatment.   Even though I was there it went by pretty quickly and according to plan.  At least the doctor's appointment part.  His appointment was for 8am and when they called him back at 8:20am, they realized that they had not scheduled him for lab work.  That is a BIG OOPS, since he can't have his chemo treatments if blood work has not been done and the results are not in for the doctor to call in the chemo infusion prescription.  So after having vitals taken, Joe returned to me in the waiting room until they called him back for labs and then to an exam room.  Joe (and I) have agreed to be part of another study being done at Duke, so for the next little bit, his doctor's appointments will be recorded (audio).  Since I am in there and might speak (I always talk), I had to sign off on the agreement as well.  So just before Leigh Howard came in, the lady handling the study came in and quietly placed the recording device on the table.  We were all on our best behavior since we knew we were being recorded.  Regardless, Joe got a good report and we were out of there by 9:20am.  Joe went on up to chemo and I went on to work.  Since his lab work had been done so late, he had to wait until around 10:15am before he was called to the back for the infusion, but even then he had to wait another 30 minutes or so before the chemo prescription was sent up to the center.

Next week he will have his CT scan on Thursday (Sept. 8) and then will begin his next 3 week cycle of chemo treatments on September 12th.  The doctor's appointments are already set and they are all at 7:00am, which even though is extremely early, are preferable to later in the day when things really start to get backed up.  Being local does have it's advantages.

Today before I left, I snapped this photo of the new Duke Cancer Center and the hospital expansion.  The building on the left hand side of the photo is the cancer center which is set to open in early 2012.  The expansion to the hospital, if I am correct, is set for completion the following year.

Thank you to everyone for your calls, emails, letters and prayers.  Joe and I both take great comfort in all the warm wishes we have received.

I Sure Did Miss the Duke Clinic Today.......NOT!

I wasn't able to go with Joe today so I can only report on his oncology and chemo appointments second hand.  Apparently he got his blood work and chemo appointment done in record time and even was up in chemo starting his infusion 15 minutes before his appointment time.  If I didn't know better I would think there is a conspiracy going on.  When I'm with him we run 2 hours late, when I'm not, he get's out early. Apparently his oncology appointment was uneventful even though he has gained 3 lbs (YEA!).  However, up in the chemo infusion center they had trouble getting a vein to use and had to stab him 3 times before getting it right.  His arm has some nice purple on it.  He is supposed to be using his moist heating pad on his arms on a regular basis to help the veins, but hasn't been doing it.  Maybe after today, he will do what he is supposed to do instead of just laying around watching TV.

Next week is his off week so he will have his next chemo appointment on Monday Aug. 22 and have a CT scan on Aug. 25 to see what the status of his tumor is.  Until then I guess there will be a lot more lounging on the sofa.  The post below this one is an article that was on WRAL.com today about the construction and opening of the new Duke Cancer Clinic.  It will be nice to see it done next February and get to use the new spacious facility.